# Does Mothering Endorse HIV/AIDS denialism



## sciencemum (Jan 29, 2012)

I was on the wikipedia page about Mothering Magazine http://en.wikipedia.org/wiki/Mothering_(magazine), and was surprised to notice that it claims that Mothering Magazine

Quote:


> endorses HIV/AIDS denialism


The link it gives as a reference for that statement is this: http://www.mothering.com/breastfeeding/hiv-and-breastfeeding-the-fear-the-misconceptions-the-facts

but this seems to be mostly about doubts over if HIV is transmitted through breastfeeding, and weighing the pros and cons of recommending third world HIV positive mothers not breastfeed.

I was just wondering if there is an actual position of Mothering on this issue, and this seemed like the place to discuss it...


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## katelove (Apr 28, 2009)

There was a thread on this a while ago (maybe last year) but I can't remember if anyone from Mothering responded with an official position. I think it arose from the Mothering magazine article about Christine Maggiore refusing to take antiretrovirals while pregnant with her daughter and then breast feeding her. They are both believed to have died of PCP although I'm not sure if it was confirmed in the case of the mother.

Sorry I can't link the thread, I can't remember what it was called and it's hard to search on my phone. Maybe someone else can remember what it was called.


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## sciencemum (Jan 29, 2012)

Thanks. I think that's the article I linked. Would be interesting to read the thread....


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## katelove (Apr 28, 2009)

The article I was thinking of was "HIV + moms say no to AIDS drugs" or at least that's what the front cover said. I can't find the article itself online, only references to it on various blogs.


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## sciencemum (Jan 29, 2012)

There's an article on Science Based Medicine, which accuses Mothering of HIV/Aids denialism based on a front cover with Christine Maggiore (http://www.sciencebasedmedicine.org/index.php/christine-maggiore-and-eliza-jane-scovill-living-and-dying-with-hivaids-denialism/)

Warning - link might make you angry!


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## katelove (Apr 28, 2009)

Yep, that's the blog I read.


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## Peggy O'Mara (Nov 19, 2001)

Mothering magazine published several articles in the late nineties and early 2000s about moms who tested positive to HIV and were asking questions about taking AIDS medications while pregnant and/or breastfeeding. These were moms with no symptoms of illness who questioned their HIV diagnosis (pregnancy can "cause" a false positive HIV test). We were criticized by some for this coverage, but it was a lifeline for the moms. I saw it as no different than publishing articles about moms questioning any other standard medical practice.

Our Wikepedia entry was written by our critics and does not do justice to our history of award winning journalism. Our coverage of these HIV moms led to more research on exclusive breastfeeding and AIDS transmission and ultimately to a change in the feeding guidelines for HIV moms, who are now encouraged to breastfeed.


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## kaylee18 (Dec 25, 2005)

Peggy, the AIDS denialist organization, Alive and Well AIDS Alternatives, which was founded by Christine Maggiore, still lists you as a member of their advisory board: http://www.aliveandwell.org/ (if you click on "about us" and scroll down, all board members are listed). Are you still a board member? What is your position on HIV/AIDS denialism? What is the position of Mothering.com?

eta: The articles that Peggy mentions appear to me to be promoting HIV/AIDS denialism in no uncertain terms:

Safe and Sound Underground: HIV-Positive Women Birthing Outside the System (with this cover photo):



(that's Christine Maggiore, pregnant with Eliza Jane, who died at age 3 of AIDS-related pneumonia)

... and at least four other articles:

Molecular Miscarriage: Is the HIV Theory a Tragic Mistake?

AZT Roulette: The Impossible Choices Facing HIV-Positive Women

HIV and Breastfeeding: The Fear. The Misconceptions. The Facts.

AZT in Babies: Terrible Risk, Zero Benefit

Very interested in your current position, Peggy, and that of Mothering.


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## WildKingdom (Mar 26, 2008)

Not to mention that pregnancy does not cause a "false positive HIV test." Pregnancy, and many other conditions, can cause a positive ELISA screen, which is why every positive ELISA screen undergoes a confirmatory Western Blot test. I am interested, Peggy, in seeing any evidence you have that pregnancy causes either a positive Western Blot or a positive HIV viral load.


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## APToddlerMama (Oct 5, 2009)

*


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## pers (Jun 29, 2005)

Quote:


> Originally Posted by *Peggy O'Mara*
> 
> Our Wikepedia entry was written by our critics and does not do justice to our history of award winning journalism. Our coverage of these HIV moms led to more research on exclusive breastfeeding and AIDS transmission and ultimately to a change in the feeding guidelines for *HIV moms, who are now encouraged to breastfeed*.


Who is encouraging HIV moms to breastfeed? Where?

I mean, outside of third world countries where the risks of formula mixed with unlcean water or not being able to access/afford enough formula can outweigh the risks of HIV. But you make it sound as if the recommendation was changed for HIV positive mothers in general, even in areas with safe water and where formula is readily available.


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## Mirzam (Sep 9, 2002)

Quote:


> Originally Posted by *WildKingdom*
> 
> Not to mention that pregnancy does not cause a "false positive HIV test." Pregnancy, and many other conditions, can cause a positive ELISA screen, which is why every positive ELISA screen undergoes a confirmatory Western Blot test. I am interested, Peggy, in seeing any evidence you have that pregnancy causes either a positive Western Blot or a positive HIV viral load.


Factors known to cause false positive HIV antibody test results If you don't like the source, at least it is very well referenced, so that you can check out the research yourself.

Quote:


> Some people may be eager to argue that if a factor is only known to cause false-positives on ELISA, this problem won't be carried over to the WB, so everything should be OK. But remember, a WB is positive by virtue of accumulating enough individual positive bands to add up to the total required by whatever criteria you use to interpret it (39) So the more exposures a person has had to foreign antigens, proteins and infectious agents, the more various antibodies he or she will have in their system, and the more likely it is that there will be several cross-reacting antibodies, enough to make the WB positive.


Here a a few risk factors from the list:

Vaccinations: flu, HepB, Tetanus

Recent viral infection or exposure to viral vaccines

Autoimmune diseases

Pregnancy in multiparous women

The flu vaccine is recommended for pregnant women. Multiparous women are are likely to have been exposed to viral vaccines if they have older children. Add to this the many other auto-immune diseases rampant today, and it is not inconceivable that a pregnant women will all those factors could have a false positive to both the ELISA and WB tests.


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## Imakcerka (Jul 26, 2011)

False positive HIV results over pregnancy is not something I have ever heard of and I'm sure it's something most people would have heard of.


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## kaylee18 (Dec 25, 2005)

The concerns listed in the article linked in Mirzam's post are mainly theoretical, stating that certain things could potentially happen, rather than that they have happened. There is one reference (#47) given for actual cases of false-positive Western blot results. That reference describes four specific cases where some, but not all, bands on a Western blot showed positive due to cross-reactivity. In those cases, there was an atypical pattern of which bands reacted and which did not, compared with the typical true-positive pattern. So that rare pattern should stand out to the person reading the results, and they should follow up in those cases with a PCR test, along with specific testing for known cross-reactive proteins.

These four cases were found among the millions of blood samples that are tested across the country from blood donations. A false positive on a Western blot is worthy of description in a journal case study because such an event is vanishingly rare. Considering that such rare cases are also identifiable due to the atypical pattern of results, and that our current technology allows us to do follow-up testing that would protect anyone from unnecessary treatment even in these extremely rare cases, I'm not seeing any justification for encouraging a mother to refuse HIV screening, follow-up testing, or treatment when such treatment is indicated. We are talking about potentially lethal consequences here. This is in a whole different ballpark from stroller or sling, vegetarian or GFCF. So I'm looking forward to seeing what Peggy has to say about this.


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## Peggy O'Mara (Nov 19, 2001)

Have any of you tested positive to HIV? Do you know any mothers who have?


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## katelove (Apr 28, 2009)

It doesn't give a reference but avert.org lists the chance of a false positive with the Western Blot rest as 1:250,000. http://www.avert.org/hivtesting.htm

I, personally, consider that fairly reliable. The maternal death rate in my country is 21:250,000!


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## WildKingdom (Mar 26, 2008)

Quote:


> Originally Posted by *Peggy O'Mara*
> 
> Have any of you tested positive to HIV? Do you know any mothers who have?


As a physician, I know many mothers, and others, who are HIV positive. Why do you ask?


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## Mothra (Jun 4, 2002)

Quote:


> Originally Posted by *Peggy O'Mara*
> 
> Have any of you tested positive to HIV? Do you know any mothers who have?


Yes. Why?


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## Mirzam (Sep 9, 2002)

Quote:


> Originally Posted by *WildKingdom*
> 
> Quote:
> 
> ...


I am curious what your speciality is and what kind of populations you work with to have so many female HIV patients?


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## WildKingdom (Mar 26, 2008)

Quote:


> Originally Posted by *Mirzam*
> 
> I am curious what your speciality is and what kind of populations you work with to have so many female HIV patients?


Internal medicine and NYC. Specifically, below 14th street. No shortage of HIV.


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## mamajama (Oct 12, 2002)

In answer to your question, Peggy, yes. I am an outreach worker for a harm reduction organisation whose clientele is entirely comprised of persons with HIV AIDS and/or Hep C.

Very curious why you ask.


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## hildare (Jul 6, 2009)

Quote:


> Originally Posted by *kaylee18*
> 
> Peggy, the AIDS denialist organization, Alive and Well AIDS Alternatives, which was founded by Christine Maggiore, still lists you as a member of their advisory board: http://www.aliveandwell.org/ (if you click on "about us" and scroll down, all board members are listed). *Are you still a board member? What is your position on HIV/AIDS denialism? What is the position of Mothering.com?*


i, too, would like a straight up answer to these questions.


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## philomom (Sep 12, 2004)

Me three! Tell us, please.


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## mamajama (Oct 12, 2002)

Perhaps some sort of rhetorical question?


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## hildare (Jul 6, 2009)




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## APToddlerMama (Oct 5, 2009)

Quote:


> Originally Posted by *Peggy O'Mara*
> 
> Have any of you tested positive to HIV? Do you know any mothers who have?


Yes! I do as well.


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## katelove (Apr 28, 2009)

I haven't. Both my clients and I have been fortunately all negative until now. However it's certainly possible that I could have a + client in the future.

I'm also curious as to why you ask


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## hildare (Jul 6, 2009)




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## Mama Jemma (Jun 29, 2012)

For what it's worth....I live in Kenya and DH works for a maternal and infant health program in nairobi's slums. HIV moms are encouraged to breast feed unil 6 months, then wean quickly over the course of one week. This is the current WHO protocol but it changes periodically. They want moms to breast feed bc the babies need the immunities, and bc it's a virtual guarantee they'll become malnourished otherwise as poor moms can't afford formula and typically resort to cows milk, rice, water etc. The quick weaning is meant to protect babies from contracting HIV, unless they were exposed during birth, but is not a guarantee. Still, commonplace belief is that breatfeeding and taking the risk of hiv exposure is preferable to severe malnutrition. Which i find interesting....sort of a lose-lose, regardless. Im not trying to hijack this thread, I just thought some people would be interested by the developing world take on this.


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## pers (Jun 29, 2005)

Yeah, it's based on studies that show mixed feeding is the most dangerous in terms of HIV transmission. So they want the kids either only breastfeed or only on formula/other foods not both at once any more than can be helped.

But that's in areas where the risk of not being able to access a steady supply of formula or the risk of formula mixed with dirty water outweighs the risk of HIV transmission. In developed nations clean water and social problems to help supply formula to those who can't afford it on their own, the risk of HIV transmission greatly outweigh the benefits of breastfeeding, and the recommendation is absolutely to bottle feed. This generally means formula, though donor milk is also an option to those fortunate enough to have access to a safe supply of it.


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## loveandgarbage (Feb 5, 2008)

Curious about mothering's stance as well...


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## lvvq (Mar 23, 2012)

this really deserves a straight answer


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## parsley (May 7, 2011)

I am also awaiting a response.


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## philomom (Sep 12, 2004)

I think we are being ignored here.


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## katelove (Apr 28, 2009)

I have seen these questions asked and not answered here before so I think we're being ignored too but I'm not really surprised. And it leads me to draw my own conclusions.


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## bri276 (Mar 24, 2005)

No one is going to call themselves an HIV/AIDS "denialist", of course. They will deny that some or all of the HIV tests work correctly, or at all, or that the virus exists, or that AZT works, or say that AZT causes the symptoms associated with HIV/AIDS, and dream up alternative reasons for why people who refuse conventional treatment often die exactly the way mainstream medicine predicts they will. And we can draw our own conclusions that way.


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## purslaine (Feb 20, 2006)

I do not think Peggy has to answer. She is hardly on trial here. We know there were a series of articles written on aspects of mothering and HIV/AIDS. I remember reading one or two and thought they were fascinating reads. She is listed as a board member at Alive and Well. If these are things you cannot live with, then perhaps you need to decide if MDC is the right place for you.

Edited to add: my above post was not directed at anyone who just discovered MDC's history of questioning mainstream HIV/AIDS. I would understand their demanding answers.


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## lvvq (Mar 23, 2012)

i'm not so concerned with whether the answer is yes or no. the answer dodging/ignoring is very suspicious on its own, and I expect a lot more from this magazine.


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## philomom (Sep 12, 2004)

Quote:


> Originally Posted by *lvvq*
> 
> i'm not so concerned with whether the answer is yes or no. the answer dodging/ignoring is very suspicious on its own, and I expect a lot more from this magazine.


Yes, as an old timer here.. I agree.


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## Adaline'sMama (Apr 16, 2010)

What is going on here? Why can no one get an answer for this simple question?


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## katelove (Apr 28, 2009)

Quote:


> Originally Posted by *kathymuggle*
> 
> I do not think Peggy has to answer. She is hardly on trial here. We know there were a series of articles written on aspects of mothering and HIV/AIDS. I remember reading one or two and thought they were fascinating reads. She is listed as a board member at Alive and Well. If these are things you cannot live with, then perhaps you need to decide if MDC is the right place for you.
> 
> Edited to add: my above post was not directed at anyone who just discovered MDC's history of questioning mainstream HIV/AIDS. I would understand their demanding answers.


Im not asking for Peggy's personal view but I am genuinely interested to know if Mothering has an official position, as they do on CIO or physical discipline for example.


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## NoraFlood (Dec 21, 2008)

Quote:


> Originally Posted by *Adaline'sMama*
> 
> What is going on here? Why can no one get an answer for this simple question?


That is a really good question. If Mothering's official stance is contrary to the accepted scientific consensus on HIV/AIDS, they owe it to the online community to make that clear. If their stance has changed over time, they should make that clear as well.

Be brave and state openly what you believe in, so that people can make informed decisions about whether they wish to participate in this community.


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## WildKingdom (Mar 26, 2008)

Quote:


> Originally Posted by *kathymuggle*
> 
> I do not think Peggy has to answer. She is hardly on trial here. We know there were a series of articles written on aspects of mothering and HIV/AIDS. I remember reading one or two and thought they were fascinating reads. She is listed as a board member at Alive and Well. If these are things you cannot live with, then perhaps you need to decide if MDC is the right place for you.
> 
> Edited to add: my above post was not directed at anyone who just discovered MDC's history of questioning mainstream HIV/AIDS. I would understand their demanding answers.


I think she opened herself up to this by choosing to participate in this thread and asking a very leading question. Members opened up about their personal experience with HIV/ AIDS at her request, and she has not come back to respond. Makes me feel like she was asking a leading question just to get clicks.


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## Peggy O'Mara (Nov 19, 2001)

Quote:


> Originally Posted by *kathymuggle*
> 
> I do not think Peggy has to answer. She is hardly on trial here. We know there were a series of articles written on aspects of mothering and HIV/AIDS. I remember reading one or two and thought they were fascinating reads. She is listed as a board member at Alive and Well. If these are things you cannot live with, then perhaps you need to decide if MDC is the right place for you.
> 
> Edited to add: my above post was not directed at anyone who just discovered MDC's history of questioning mainstream HIV/AIDS. I would understand their demanding answers.


Thank you, Kathy.

I do feel that you are putting me on trial here for publishing controversial articles. Yes, I am still listed as a board member of Alive and Well. This is because I was originally a board member for Moms Against Mandatory Medication, which was later folded into Alive and Well. I support parents having informed consent about ALL issues. I do not nor does Mothering have a formal position on AIDS or HIV, any more than we have an official position on birth, vaccinations or any other subject. Our position is one of informed consent on all issues. Parents deserve ALL information on which to make decisions and I support parents in making their own choices.

I asked if people had personal experience with themselves testing HIV and having to decide about medications and breastfeeding because I am sympathetic to that mother and I have published her stories. It seems that many of you are not sympathetic to her and only consider one position as valid. Nonetheless, our publishing of the experiences of HIV positive mothers who are conflicted about medication and want to breastfeed did, in fact, help to influence international breastfeeding research and policy. I am proud of that and proud that our articles acknowledge the dilemma of HIV positive mothers.

How many of you have read the articles that we published?

I have not been inclined to post in this hostile environment in which my veracity itself is questioned and also because I have previously addressed this issue on MDC on numerous occasions. Many of you obviously have an agenda and are not sincerely interested in hearing my position, but only in refuting what you imagine it to be.

I feel sorry for new members who have to navigate this kind of negativity and lack of civility.


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## eclipse (Mar 13, 2003)

If you don't support the mission of Alive and Well, you really should ask that your name be removed as a board member. Otherwise, people will continue to assume that you endorse it.


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## Adaline'sMama (Apr 16, 2010)

Quote:


> Originally Posted by *Peggy O'Mara*
> 
> Thank you, Kathy.
> 
> ...


Except for circumcision, gentle discipline, and gentle sleep methods. Am I correct in thinking that those are formal positions?

Thanks for coming back and posting Peggy. I don't see how this environment is hostile any more than any other thread where someone asks a question and then doesnt come back to answer it. I think people do want an answer to this issue, and it seems like people have been asking for a while now. I've read the articles, and I see what you are saying, but I also see how it can come off as offensive. I understand that HIV positive mothers have a dilemma, and I do think it is important to hear more than one opinion, although I disagree with not medicating. Avoiding users requests for an explanation seems like it was way worse than the explanation itself. I don't see why this wasn't posted months ago.

To the PP who said that we all deserve an answer so that we can make a decision about whether or not to be a part of this community: Even if Peggy said that she does have a formal position on HIV/AIDS, I don't see why that would mean that someone shouldn't be apart of this community. The person who founded/ admins (and I suppose, earns money from) MDC is not the entire community. I wouldn't make a decision based on what Peggy thinks (no offense) anymore than I'd make the decision not to be a part of this community because there are a few people who are pro-circ, spank their kids regularly, or are pro-life (all of which are present in this community). The online community is only what we make it, and if everyone cool leaves just because they disagree with something, then what's left for the people who stay. (Ha, Ive been asking myself this a lot lately).


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## katelove (Apr 28, 2009)

I'm sorry you felt attacked Peggy. That wasnt my intention and I apologize if my posts to this thread came across that way.

I haven't read the articles because, as I mentioned, I couldn't find them online. If anyone has links they could post I'd appreciate it.

I do wonder it we're talking about two different issues here though I as see quite a difference between questioning the need for a particular medication and questioning the existence of a disease. I don't know that many people on MDC would argue with the need for pregnant and breast feeding women to be cautious about taking drugs for any reason. I suspect fewer would agree with the idea that HIV/AIDS as a disease process is a myth.

On the subject of breast feeding policy, WHO still does not recommend breast feeding for women in what it calls wealthy countries who have reliable access to formula and clean water. The newest guidelines recommend BF for women who don't have access to safe formula. They now advise rapid weaning at 6 months only if women do not have access to antiretrovirals and the means and motivation to adhere strictly to the regime. For women who can adhere to antiretroviral treatment the advice is to continue BF until 12 months, introducing solids and formula after 6.


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## Ellie'sMom (Aug 10, 2002)

Quote:


> Originally Posted by *Peggy O'Mara*
> 
> Thank you, Kathy.
> 
> ...


I have been lurking on this thread with great interest, and I am so disappointed in this response. Peggy, I do not read where anyone was personally attacking you or the veracity of anything you have said (with the exception of the one post about asking questions to increase "clicks: which I don't think deserves a response.) I think this has been a civil discussion, but I think posters feel dissatisfied with your lack of response after entering the conversation. And now it seems like you are withdrawing rather than showing a willingness to publicly wrestle with what is clearly a painful subject. I feel compassion for the mother who was the subject of those stories. That cover story was the first issue of the magazine I ever purchased. I was very distressed by the story, but did appreciate the piece, because it was an issue that was not getting coverage anywhere else. In retrospect, I think her story is a tragedy. But there is a difference between journalism and advocacy. I do not question telling her story, but the question being asked today, is what has been learned from that story. MDC does not exist in a vacuum and absolutely takes formal positions. We cannot advocate spanking, CIO or RIC here. Please don't hide behind the banner of "Informed Consent." That is clearly an oversimplification of this discussion.

As MDC has aged (and I've been a member for 10 years so I feel qualified to say this), one of the best changes has been the community's ability to get beyond the dogma of natural family living/AP and to be able to really get to the meat of the complex conversations we share . Part of engaging as a member of a community is a willingness to be challenged. Please assume that the challenge comes from a place of mutual respect and a yearning to understand the wealth of experiences that exist on these boards.


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## loveandgarbage (Feb 5, 2008)

Well said, Adaline'sMama. Also there is a huge difference between supporting an HIV+ mother's personal choices re: ATV drugs and/or breastfeeding and denying that HIV leads to AIDS without treatment.

I don't want to steer this thread off-course, but I feel like I have to say something-- sorry!-- from my experience the split of pro-choice/pro-life mamas on MDC is pretty 50/50. And I think it's a little offensive to group pro-choicers into the same group as those who spank their kids. Definitely not trying to start a debate, just wanted to say that







.


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## Adaline'sMama (Apr 16, 2010)

Quote:


> Originally Posted by *loveandgarbage*
> 
> Well said, Adaline'sMama. Also there is a huge difference between supporting an HIV+ mother's personal choices re: ATV drugs and/or breastfeeding and denying that HIV leads to AIDS without treatment.
> 
> ...


We won't let this get off topic. My comment was to make the point that just because I personally disagree with some of the community about things, doesn't mean that I would leave the community. I am pro-choice to the max. That was a typo







Ill fix it.


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## loveandgarbage (Feb 5, 2008)

Cool


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## LLQ1011 (Mar 28, 2012)

Quote:


> Originally Posted by *katelove*
> 
> I'm sorry you felt attacked Peggy. That wasnt my intention and I apologize if my posts to this thread came across that way.
> I haven't read the articles because, as I mentioned, I couldn't find them online. If anyone has links they could post I'd appreciate it.
> ...


I have been lurking this thread too. I am curious as to the official stance as well. I am a new member trying to decide if this is a good place for me. I have a friend who is HIV+ and has a daughter. I know how she feels about it and I know how I feel about it. I have seen so much on this site how stances are taken with no give. I am curious why this issue is not being answered. I could understand the response.

"We are not taking a stance on this issue due to a lack of confirmed scientific reasearch." or something like that. (True or not)

But I would like to hear an answer.


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## NoraFlood (Dec 21, 2008)

Quote:


> Originally Posted by *Adaline'sMama*
> 
> To the PP who said that we all deserve an answer so that we can make a decision about whether or not to be a part of this community: Even if Peggy said that she does have a formal position on HIV/AIDS, I don't see why that would mean that someone shouldn't be apart of this community. The person who founded/ admins (and I suppose, earns money from) MDC is not the entire community. I wouldn't make a decision based on what Peggy thinks (no offense) anymore than I'd make the decision not to be a part of this community because there are a few people who are pro-circ, spank their kids regularly, or are pro-life (all of which are present in this community). The online community is only what we make it, and if everyone cool leaves just because they disagree with something, then what's left for the people who stay. (Ha, Ive been asking myself this a lot lately).


I don't think that everyone should necessarily make a decision about this community based on any particular stance of MDC...but for me (and for many people), the idea of participating in a forum where the official position is that HIV does not cause AIDS, and that pregnant moms should NOT take antiretroviral medications, and that moms with HIV should breastfeed NO MATTER WHAT, even if they have access to clean water and ample formula, is unsavory. I am okay with disagreeing with MDC on lots of things. An HIV denialist position has enormous, non-theoretical potential to actively cause harm to women and children, and I am not okay with that. So my reason for really wanting to know the answers to these questions is that I do not want to give MDC my page views and clicks, and fill the coffers, if I feel that MDC as an organization is causing harm to women and children. I already have issues with the largely negative view of vaccines espoused here. HIV denialism is too much for me.


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## LLQ1011 (Mar 28, 2012)

Quote:


> Originally Posted by *NoraFlood*
> 
> I don't think that _everyone_ should necessarily make a decision about this community based on any particular stance of MDC...but for me (and for many people), the idea of participating in a forum where the official position is that HIV does not cause AIDS, and that pregnant moms should NOT take antiretroviral medications, and that moms with HIV should breastfeed NO MATTER WHAT, even if they have access to clean water and ample formula, is unsavory. I am okay with disagreeing with MDC on lots of things. An HIV denialist position has enormous, non-theoretical potential to actively cause harm to women and children, and I am not okay with that. So my reason for really wanting to know the answers to these questions is that I do not want to give MDC my page views and clicks, and fill the coffers, if I feel that MDC as an organization is causing harm to women and children. I already have issues with the largely negative view of vaccines espoused here. HIV denialism is too much for me.


100% agree!


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## nstewart (Nov 6, 2010)

Quote:


> Originally Posted by *Peggy O'Mara*
> 
> Thank you, Kathy.
> 
> ...


As a board member, are you not obligated to participate in annual/other meetings? Is the board not elected by the members on an annual basis? If you don't agree with the position of the organization, why are you still on the board? Resigning is as simple as a one line letter.

I don't think this thread has been hostile. I've been following it and I think that valid questions have been asked, and that members deserve honest answers. I don't think that is hostile. I also don't get the sense (after having read the whole thread) that people are questioning the responses they've received because they have a particular "agenda". Rather, I think that members want answers and honest dialogue.


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## pek64 (Apr 8, 2012)

I disagre with the comments that this has not been hostile. There has clearly been a common expected response of what is "rational". If you are not 100% ok with an alternative view, then admit you are judging those who are responding differently. I am thankful I never had to face that issue and make that decision! I, therefore, refuse to judge those who have.


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## purslaine (Feb 20, 2006)

nm


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## kmeyrick (Aug 30, 2006)

I too believe mothers have the right to all information concerning AIDS. By that I mean valid information. Factual. Science and evidence based. Not false information that has been fully discredited. Not false information that has resulted in preventable death. I am floored that people are still clinging to quack theories because it's easier to do that than admit they were wrong. Perhaps it would affect their income as well if they invested in the AIDS denialism movement.


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## kmeyrick (Aug 30, 2006)

Quote:


> Originally Posted by *pek64*
> 
> I disagre with the comments that this has not been hostile. There has clearly been a common expected response of what is "rational". If you are not 100% ok with an alternative view, then admit you are judging those who are responding differently. I am thankful I never had to face that issue and make that decision! I, therefore, refuse to judge those who have.


"Alternative viewpoints" apply to things that are subjective. Unfortunately, facts and science are not subjective. The theory of a geocentric universe is not an alternative viewpoint. It is a misconception.


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## bri276 (Mar 24, 2005)

Quote:


> Originally Posted by *katelove*
> 
> I do wonder it we're talking about two different issues here though I as see quite a difference between questioning the need for a particular medication and questioning the existence of a disease.


Eh, in the case of HIV/AIDS, there is a pretty direct link. The anti AZT people are overwhelmingly denialists.

I feel sorry for the old members who felt so censored, edited and repressed that they left entirely.


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## LilyTiger (Dec 11, 2011)

As a new member, I don't think it is at all inappropriate to ask MDC to update an outdated stance on a topic that science has clearly and irrefutably proven. As another poster pointed out, while there may have been confusion a decade or two ago, there certainly isn't now, and Maggiore and her daughter's untimely deaths are just another bit of proof.

Second, I agree entirely with *NoraFlood* above. I am willing to be skeptical and open minded when the evidence supports such open mindedness or when the science itself is unclear. But being a part of a community that even tangentially supports the extremely dangerous belief that HIV does not cause AIDS goes beyond any "alternative" approaches to parenting and enters the realm of conspiracy theories. As a political scientist, I am painfully aware of the incredible harm done in Africa by AIDS deniers and the fact that activists like Maggiore were influential in encouraging some African governments to turn away from scientifically-based treatments to wholly ineffective treatments like garlic (in South Africa, for example), thus causing untold deaths and encouraging the spread of the disease.

Ultimately, I came to Mothering in the first place because, as a pregnant woman, I felt that science didn't support the medicalized version of pregnancy and birth we practice in the West. And I thought this would be a place where science and evidence would trump allegiance to a particular ideology or creed from whatever direction. Peggy's response has only demonstrated that she, at least, does not care about science but in fact holds to ideas that have not only been proven false, but deadly. Like others above, I don't think I'm comfortable participating further (and certainly not supporting, financially or otherwise) such a person or group until a retraction is printed or at least an actual conversation is begun.


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## pek64 (Apr 8, 2012)

In the original post it clearly states the link provided is to an article on breastfeeding with HIV, NOT does HIV cause AIDS.


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## herbsmd (Jun 14, 2012)

I have been following this thread too. I also think it to feel hostile.

Lay people will think all kinds of things--I myself am a lay-person and, largely because of a lack of trust of the medical community, I would consider myself skeptical of all kinds of medical claims.

I worked for ten years as a medical illustrator. I was originally a pre-med student with a lot of art/art history credits when, early on in my junior year a study that I had participated in for the past two years was written up with falsified data. I was so put off, and too young and naive and quiet to speak up about it, that I promptly changed my major to art (the only major I could graduate on time with). I then went to graduate school in philosophy. Then I went to graduate school again to become an educator.

While in graduate school and after my first son was born, I was an artist for two doctors who also falsified data. In ten years, perhaps that's not a bad number...but it was enough to give me a heavy dose of skepticism whenever I read any kind of quantitative research. In defense of people like Maggiore or perhaps Peggy, I have to say that anyone who at least brings to light the devil's-advocate story is helping the integrity of the argument as a whole. That's not to say that, in the interim, people won't die when it could have been prevented--they certainly do. But then again people die (or grossly lose their quality of life) in the hands of medicine all the time when it could have been prevented as well. (Not just medical mistakes, but things like falsified research, a host of ills which stem from capitalistic greed, and we could have a long discussion about the pharmaceutical culpability of prescribing highly-addictive pain medications. All of these things help to provide skepticism and animosity toward the medical community--a skepticism that, as we can clearly see, could be lethal.)

We all have probably heard the saying, "with great power comes great responsibility." The medical community has power--a lot of it. Because of that power they have two gigantic responsibilities (in my book). First, they can't be unethical--not any of them, and not ever. If they want to hold the power that they have, they must hold in the highest regard their ethical standards. Second, they have to be information providers, and excellent ones at that.

As far as the ethical ramifications go, yes, I know that doctors take the Hippocratic oath. Then they promptly forget it--at least many of the ones I've met: the ones that have told me that I didn't really need to breastfeed or the ones that routinely prescribe my mother-in-law with 300+ highly-addictive pain medications each month. Or the one who advised me to give my son a CT scan after a concussion until my husband (who used to be a veterinarian before switching to philosophy twenty years ago) called and asked if he had blood on his eardrums (no) or problems with balance or eye-tracking (no) or any signs that would indicate that kind of procedure (not really), after which time all of the doctors suddenly said that they supported our decision to NOT give him the procedure (which raises his risk of a brain tumor by 700 times). You know, these are the things that lay people have to deal with, so when I read any scientific study or when any doctor tells me that my child "needs" something, I certainly don't have a lot of faith in their assessment, however honest they may be. Probably some of the time I'm wrong--perhaps Maggiore was wrong. But the medical community has been wrong too...and how often do they admit it? Where is their integrity?

And medical information needs to be disseminated, dissected, and discussed in larger circles. No more expensive medical journals--the information needs to be totally free and available to everyone. And they need to teach people, the layest of the lay-people, exactly what it means. And not just in little pamphlets either, but by addressing people and dissenting groups individually, on a one-to-one basis if needed, to continue to uphold their reputation. And on message boards, they could do better by being wholly understanding and explaining the facts that they know while trying their best to understand the extraordinarily powerful impulses of human nature and self-preservation.

I read the articles. I think they did an excellent job of polemicizing--of opening up the discussion for those who may be going through the same thing. And I looked at the Alive and Well website and I got the feeling that there are a lot of people on that website who were given a traumatic diagnosis and who weren't cared for properly in the aftermath causing all kinds of mistrust issues in the medical community. Who can blame them? Who here is suffering from a life-threatening diagnosis? My heart goes out to all of them. And, as Peggy said, they're putting the devil's advocate argument out there...the burden of proof and of honesty and of education is now with the medical community. I have heard less coverage of HIV/AIDS in the news in the last ten years leading me to wonder what all of the hype was about when I was a kid...and where did the hype go except in Africa where people die of all kinds of preventable things all the time. How is the medical community upholding their burden of proof? The truth is that they probably aren't.

As for Peggy, I did think that people were jarring in their responses and how dare they come on her mothering forum and accuse and demand responses for what is already proper journalism. This is a forum for women where we learn to weave together the threads of life into a pattern that will eventually be uniquely our own. There can be no one answer that will ever satisfy every woman--that is why we all need one another's answers to these questions to find where our own heart lies. Peggy is not the mother of all mothers--she is a mother like us, and one who has dedicated her life to standing up against ills of all kinds in defense of motherhood...a cause so noble I could only hope one day might be etched on my own tombstone. And if, for reasons of sympathy or empathy or nostalgia or just as a supporter of devil's advocates she is on the board of directors for any particular cause, her personal life does not have to be reflected in every corner of Mothering and it certainly doesn't have to be defended.

Peggy, I think you've done a fantastic job over the years. I used to get my girlfriend's old copies of Mothering when she was through with them and half of the time I would just stop after your editorial...it was always so down-to-earth and warm and a good reminder of the path that we as mothers are gifted with. I have sometimes disagreed with some articles in the magazines but they have always made me think. I have always felt that your impulse for this magazine was wholehearted, capable, and full of moral integrity. That is more than I can say I have ever felt from the medical community.

If there is ever an updated article, I am sure it will be as currently applicable as these ones probably were in their time.

Maggie


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## WildKingdom (Mar 26, 2008)

Quote:


> Originally Posted by *herbsmd*
> 
> I have been following this thread too. I also think it to feel hostile.
> 
> ...


First, I would like to know who told you that a head CT increases the risk of a brain tumor by 700x. That's just wrong. It will increase the risk of cancer by 0.036%. There are many radiation risk calculators available online.

Second, regarding HIV and AIDS- you ask this- "I have heard less coverage of HIV/AIDS in the news in the last ten years leading me to wonder what all of the hype was about when I was a kid...and where did the hype go except in Africa where people die of all kinds of preventable things all the time. How is the medical community upholding their burden of proof? The truth is that they probably aren't."

Where did the hype go? Thanks to medical research and patient advocacy, there are amazing medical treatments for HIV now. People are living with HIV as a chronic disease. They don't die in a quick, horrible fashion the way they did before. It's just not as newsworthy.

When I started my medical residency in NYC, it was the very beginning of the HAART (highly active anti-retroviral therapy) era. We had an entire floor devoted to AIDS patients. There were so many, though, that they overflowed that floor and were in all areas of the hospital. Not a single day went by when I didn't have a patient die of AIDS. I could diagnose PCP pneumonia from across the room with one glance. That's how common it was. I learned how to do lumbar punctures on an unfortunate gentleman with cryptococcal meningitis whose intracranial pressure was so high that he needed daily LPs. I saw a young woman come in with such a virulent strain of staph aureus endocarditis that she ruptured her aortic valve before my eyes and died.

Then something started to happen. Fewer and fewer AIDS patients were in the hospital. I was still seeing them in clinic, but they weren't getting sick anymore. By the time I finished my residency, the AIDS ward had closed. Not enough patients. They didn't disappear. They didn't all die. They were just doing fine. Why? They were taking amazing combinations of medications. The medication regimens had become hugely simplified. They were now living with a chronic disease, not dying of AIDS.

I still have patients with HIV. Now I get to nag them to exercise and watch their cholesterol, just like any of my other patients. For them, one of the hardest thing to adjust to is the knowledge that they are likely to live a normal lifespan. They watched huge numbers of their friends and loved ones die, and they always expected to join them. But here they are. Once in a while, we talk about the bad old days of AIDS. It was an amazing an horrifying time- horrifying as people died right and left, but amazing to see some literally come back from the brink as medications improved.

Having seen what I've seen, I have no patience for the "devils advocate" role that you espouse. That's playing fast and loose with people's lives. This is not theoretical- it's factual history. Christine Maggiore's actions led to the death of her 3 year old baby, and eventually her own death. You say that the burden of proof is with the medical community. I disagree. The burden of proof lies with those making the outlandish claims that HIV does not cause AIDS and that HIV meds are poison. Medical science should not have to waste time and resources responding to that.

Anyway, that's my 2 cents- from someone who has been on the front lines over the past 20 years.


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## herbsmd (Jun 14, 2012)

Quote:


> Originally Posted by *WildKingdom*
> 
> First, I would like to know who told you that a head CT increases the risk of a brain tumor by 700x. That's just wrong. It will increase the risk of cancer by 0.036%. There are many radiation risk calculators available online.
> 
> ...


"First, I would like to know who told you that a head CT increases the risk of a brain tumor by 700x. That's just wrong. It will increase the risk of cancer by 0.036%. There are many radiation risk calculators available online."

The third doctor we saw at Children's Hospital gave me the number 700x. Perhaps he was wrong or perhaps there is a new study out there which isn't used in the algorithms for the current calculations? I don't know...I faithfully took a doctor's word for that number! If you want to say that he was fibbing--I can't see why he would be--it doesn't help your argument at all. He agreed with me after my husband had called and it is possible that he said something like "...up to 700x", but I clearly remembered that number. If a doctor gave me a false number, I'm already angry at him, whether he was agreeing with me or not.

"Having seen what I've seen, I have no patience for the "devils advocate" role that you espouse. That's playing fast and loose with people's lives. This is not theoretical- it's factual history. Christine Maggiore's actions led to the death of her 3 year old baby, and eventually her own death. You say that the burden of proof is with the medical community. I disagree. The burden of proof lies with those making the outlandish claims that HIV does not cause AIDS and that HIV meds are poison. Medical science should not have to waste time and resources responding to that."

I don't have patience for my grandmother's surgeon who killed her in a surgery that she didn't need (he was later sued for malpractice in the same situation by three other families and lost his license). I never knew my grandmother and my mother lost her mother when she was in her mid 20s unnecessarily. That was playing fast and loose with a life, and that was within the medical community. Now--you don't have patience and I don't have patience. Where does that get us?

Instead, let's both try to have patience and see why people do what they do so that, when the chance arises again, we'll be able to stop it, not just say that we don't have patience.

And every devil's advocate argument is helpful to the structure and strength of the argument as a whole--that doesn't mean that we have to listen to arguments from years ago and pretend that it's the same one that's going on today. These arguments are always changing, bit by bit, until they disappear completely. The medical community is actually strengthened by these arguments, however much of a pain-in-the-rear it is for doctors to have to contend with them over and over again.

"Where did the hype go? Thanks to medical research and patient advocacy, there are amazing medical treatments for HIV now. People are living with HIV as a chronic disease. They don't die in a quick, horrible fashion the way they did before. It's just not as newsworthy."

Whether it's NBC newsworthy or FOX newsworthy is not the only kind of news I'm talking about. I think the kind of information overhaul I'm imagining is unlikely to happen--but it is still the burden of the medical community to make sure that their information is disseminated and to talk to people who are in groups such as Alive and Well to bridge the gap. An effort needs to be made within the medical community to understand medical skeptics, or this situation will never change. After all, medicine is intervention--it is not a part of the original course of natural events. If you want to intervene in someone's life, you have to earn that right. For pharmaceutical companies, that effort could mean publishing a number of books that stay current with research and break it down into lay terms that more people can understand. For doctors, it means making sure that your bedside manner has you seeing each new patient as if they were your first one (just like we as educators have to see our students). In other words, forget about everything you've learned when you talk to your patient--your patient doesn't know that you've been on the front lines for years and they don't know what you've seen. They don't know that you're honest and ethical, and they don't know that you have their best interests at heart. You have to win them over every single time. Teachers practice this (some doctors and other people who work in public relations do this) and it is a big help for winning over your students/patients/customers opinions and for opening up the lines of healthy communication.

I do hear what you're saying, WildKingdom. Sometimes I hear something on the news (sometimes it isn't even true!) and I know that I'm going to have six or seven parents who want to have lengthy phone calls about something that's happening in the educational world and how, exactly, I'm planning on dealing with it in class. I roll my eyes a hundred times before the first phone call hits. I'm human too. But it never works to roll my eyes at any of those parents. Never. I've learned that it's really helpful to talk to parents in a big group, and to let them have the final say. If I want that final say to incorporate what I think is right, I have to come up with a really good argument that explains why I think it's right. If I can't come up with one, perhaps I'm not right after all or maybe I am not hearing my parents correctly. Either way, the burden is on my shoulders...not theirs.

And just like I'm an educator even when I'm on this forum, you're also still a doctor. You can still have bedside manner with people who aren't your patients. And I can still have patience with people who are still learning.

For what it's worth, I've birthed all three of my children in the hospital--all three with pitocin (my water broke), and two with epidurals. My children are all up-to-date on their vaccinations and I let my Jewish ob circumcise my boys. Even with all of my skepticism, I'm a critical thinker at heart and I still listen to doctors with my critical-thinking skills intact and my emotions in check. That is not to say, however, that I think everyone is going to have the philosophical poise that I have which has come from a lot of reading, a lot of study, and endless argumentation with very wise individuals. And I know that sometimes my emotions can still get the best of me too--especially when my mothering instincts are called into play.

And also I know people with AIDS. I have heard, firsthand, the struggle that they have of living when their friends/partners didn't make it. And I also know about the HAART therapies--one of our family friends is Ian Gilson. I grew up with his daughter and he came to speak to our school every year about HIV/AIDS since we were in fourth grade. We have always been neighbors, first in the suburbs and now in the city.

But what I know most of all (from my years as an educator) is that education can only take place in a non-hostile environment. If a person simply wants to sound knowledgeable and to come across as impatient with all of those "crazies" who don't know any better...then I guess that's their prerogative. If they want to participate in an argument, then they have to accept the positions that all people start from (even if they are clearly wrong from the experientally-educated vantage point) and be patient with their arguments. If one can't be patient, they probably shouldn't argue.

Thank you for your stories...they are candid and meaningful, and they do wonders to help people understand what doctors see in their practice and what HIV/AIDS patients see in their lives. I hope that therapies continue to improve and that people continue to argue those therapies to make sure they're continually safe and effective, especially for mothers and their babies.

Maggie


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## pek64 (Apr 8, 2012)

The medical community cannot be assumed to be correct just because of being the medical community! Doctors make mistakes. Studies get proven wrong. Medications are approved and used quickly, making the patients part of an experiment. I gave that kind of trust once, and suffered because of it. I will now always exercise my right to make my own decisions, since I am the one suffering the consequences. And I have limited patience for anyone from the, or supporting the, medical community who unwilling to talk to me as an intelligent person and provide information calmly and respectfully.


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## Peggy O'Mara (Nov 19, 2001)

Thanks to herbsmd ! And, thanks to everyone for getting the conversation back on track. It really is about whether or not we are prepared to accept a parent's freedom of choice with an issue like HIV/AIDS. Are we willing to accept freedom of choice in regards to cancer medication? medication for children? vaccinations? circumcision? co-sleeping? homebirth? breastfeeding? In each of these cases, there is a strong, accepted dogma that criticizes, sometimes demonizes, those who reject the dogma. Where do we draw the line in regards to freedom of choice? Can there be a line if there is actual freedom?

This is where Christine Maggiore comes in, especially for those of you who actually blame her for her death and the death of her daughter. Do we only grant personal liberty if everything turns out OK? The reality of Christine's situation is much more complex than you realize, as are most people's situations. The independent analysis of her daughter's death reported that she died of an allergic reaction to medication. What mother under normal circumstances would not be weakened by the death of her child? Christine had to endure this as well as constant media attacks and legal challenges. Law and Order aired a show based on her life and demonizing her several months before her death. Christine had tested positive, negative and indeterminate over the years, but she took care of her health as though she were positive and was seldom ill. The official cause of her death was pneumonia; I think she died of a broken heart. Certainly those who knew her were rocked by her death, but the bottom line is whether or not she got to choose. She was never found to be negligent as she was investigated by social services regularly. It's impossible to say if she and her daughter would have lived or died if other choices had been made.

I appreciate all sides of this issue. My old friend has run the AIDS clinic here for many years and has done so much to help those with HIV/AIDS. He and his staff disagree with the fact that we published the articles we did and we published his critical letter in the magazine. An old friend who grew up with my kids has AIDS now and has told us that he has gotten cancer from the medication, something that his doctor warned about and verifies. In the late nineties, a man in NYC who works with HIV wrote to me to tell me that universal HIV testing of pregnant women was going to start and he suggested that Mothering cover it. I had never felt that HIV/AIDS was something we would cover at Mothering before then.

In looking into the issue I saw it as a human rights issue because I am sympathetic to the difficult choices a woman who tested positive to HIV would face, especially a naturally minded woman, especially a woman with no symptoms of illness. We also covered the story of Kathleen Tyson, a mom who fits this description and who tested positive to HIV during her pregnancy. She questioned the diagnosis as she had been monogamous for over a decade and had no signs of illness or risk factors. It was then that I learned, as has been discussed in this thread, that pregnancy and other things can contribute to a false positive. Therefore, women may have reason to question their diagnosis.

You're right WildKingdom, that AIDS has gone down and medications have improved. We published our articles in the late nineties at a time when there were more deaths from AIDS and the drugs therapies were in development. The CDC reports that death with HIV diagnosis increased from 1987 through 1994, plateaued in 1995, then decreased 33% per year from 1995 through 1998 and 5.5% per year from 1999 through 2009. Death rate declined by 13.3% from 2009 to 2010. The CDC estimates that 17,774 people died from AIDS in 2009.

Another reason why a woman like Kathleen Tyson has a good reason to question her diagnosis is that HIV occurs most predominantly among men who have sex with men (MSM). In the 2009 CDC estimates of new HIV cases, 61% occur among MSM.

Another thing that women, especially pregnant women, are rightly concerned about are the drugs. They may be effective, but they are not benign. In our article we reported that the rate of miscarriage and birth defects is increased for pregnant women taking the drugs. The Canadian Pharmaceutical Association cautioned about AZT in 1997:

"The long-term consequences of in-utero and infant exposure to zidovudine [AZT] are unknown. The long-term effects of early or short-term use of zidovudine in pregnant women are also unknown...The incidence of adverse reactions [to AZT] appears to increase with disease progression, and patients should be monitored carefully, especially as disease progression occurs. 

Retrovir (in Compendium of Pharmaceuticals & Specialities). Canadian Pharmaceutical Association. 1997;1357-61.

This is not to start an argument again, but simply to say that there are compelling arguments for taking the drugs and complying with the AIDS protocol and compelling arguments for an otherwise healthy pregnant woman with no symptoms to question them.

Regarding Mothering's position. I'm really not comfortable with Mothering having any position other than supporting informed choice. But, as things have evolved online, the community and especially the moderators and administrators have not felt comfortable or had the time to host all conversations, especially pro-spanking, pro-crying-it-out, or pro-medical circumcision conversations. This can be problematic for new members who have come here to discuss their options and see some conversations apparently closed. The mods try to walk a fine line between holding to some standards for the existing community and welcoming new members who may be confused by these standards.

It reminds me of when I was a LLL Leader and one of the meeting themes was Weaning. I wanted to make pregnant moms feel welcome but also support the mom nursing an "older" baby. It's a dance between new and veteran community members and I appreciate those of you who are new and willing to ask, "What's up?" and those who have been here for a while and are willing to answer questions and help new members navigate and feel welcome.

I do think that the extreme positions and extreme posters are not the norm here. We have a large community with nearly 200,000 members. Over 2000 members are online everyday and nearly that amount join every month. We have a simple UA that asks people to be civil and respectful. We are in the process of re-writing our mission statement and will make that more accessible.


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## Imakcerka (Jul 26, 2011)

Maggiore rejected the coroner's conclusion, ascribing it to political bias and attacking the personal credibility of the senior coroner, James Ribe. Maggiore retained a board member of Alive & Well AIDS Alternatives, Mohammed Al-Bayati, to review the autopsy report. Al-Bayati holds a Ph.D. in comparative pathology (the pathology of animal diseases). He is not a medical doctor, nor is he board-certified in human pathology. He is the author of a book entitled Get All The Facts: HIV Does Not Cause AIDS. The coroner report- Eliza Jane had PCP pneumonia and HIV encephalitis (report no longer available online) Al-Bayati's report- http://www.justiceforej.com/Al-BayatiReport.pdf Analysis of Al-Bayati's report- http://www.rickross.com/reference/alive/alive4.pdf


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## katelove (Apr 28, 2009)

Quote:


> Originally Posted by *Imakcerka*
> 
> Maggiore rejected the coroner's conclusion, ascribing it to political bias and attacking the personal credibility of the senior coroner, James Ribe. Maggiore retained a board member of Alive & Well AIDS Alternatives, Mohammed Al-Bayati, to review the autopsy report. Al-Bayati holds a Ph.D. in comparative pathology (the pathology of animal diseases). He is not a medical doctor, nor is he board-certified in human pathology. He is the author of a book entitled Get All The Facts: HIV Does Not Cause AIDS. The coroner report- Eliza Jane had PCP pneumonia and HIV encephalitis (report no longer available online) Al-Bayati's report- http://www.justiceforej.com/Al-BayatiReport.pdf Analysis of Al-Bayati's report- http://www.rickross.com/reference/alive/alive4.pdf


Thanks for posting this. It's what I had read also but I couldn't remember where.

Regarding Christine Maggiore's death, I have no doubt that grief over the loss of her daughter could have contributed to her death. But the fact remains that she died of PCP pneumonia, a disease which is almost exclusively limited to those with immune system disorders. I respect her right to choose not to take drugs but exercising that right doesn't grant her immunity from the consequences. I assume when she chose not to take the drugs she considered the possibility of an opportunistic infection and decided the benefits outweighed the risks. And maybe (I hope) she still felt that way when she died. Certainly plenty of people choose not to proceed with cancer treatment knowing that it will most likely reduce their life expectancy and they are ok with that.


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## stik (Dec 3, 2003)

Eliza Jane Scofield didn't die in the 80s or early 90s when there was still a lot of confusion about what caused AIDS and how to treat it. She was born in 2001 and died in 2005. There was a scientific consensus about HIV and AIDS and a well-developed protocol for management of pediatric AIDS and HIV. I worked with HIV+ 8-10 year-olds at a summer camp during 1996 and 1997. They were active, healthy kids. If you didn't know their files and med regimens, you wouldn't have picked them out of the crowd (you might have thought they were a couple years younger than they were - they tended to be short for their ages). With treatment, Eliza Jane Scofield's prognosis would have been good.

I respect parent choice about a lot of things. However, some choices have predictable negative outcomes for children and reflect poor judgment and reasoning on the part of parents, and I feel strongly that supporting those choices is unethical. We're not talking about formula vs. breast or raising a kid vegan or diapering philosophies here. We're talking about a woman who was so deeply in denial about her child's medical condition that she not only refused treatment for that condition leading to the child's death at age 4, she then rejected the coroner's assessment of cause of death and turned to an AIDS-denying vet for a conclusion she liked better. I know Maggiore's heart broke when her daughter died. She wrote a pretty memorable article about it. I have no doubt that this loss contributed to Maggiore's own death. They might both be alive now had Maggiore not been misled by AIDS denialists.


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## daifuku (Jul 10, 2012)

"It really is about whether or not we are prepared to accept a parent's freedom of choice with an issue like HIV/AIDS. Are we willing to accept freedom of choice in regards to cancer medication? medication for children? vaccinations? circumcision? co-sleeping? homebirth? breastfeeding?"

What about second hand smoke? Seat belts? Lead paint exposure? Corporal Punishment? Why accept and advocate for a parent's freedom of choice to let their children die of AIDS out of ignorance, but not freedom to let their kids develop asthma or lung cancer? Brain damage? Etc? The freedom of choice argument just doesn't cut it here.


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## purslaine (Feb 20, 2006)

Quote:


> Originally Posted by *daifuku*
> 
> "It really is about whether or not we are prepared to accept a parent's freedom of choice with an issue like HIV/AIDS. Are we willing to accept freedom of choice in regards to cancer medication? medication for children? vaccinations? circumcision? co-sleeping? homebirth? breastfeeding?"
> 
> What about second hand smoke? Seat belts? Lead paint exposure? Corporal Punishment? Why accept and advocate for a parent's freedom of choice to let their children die of AIDS out of ignorance, but not freedom to let their kids develop asthma or lung cancer? Brain damage? Etc? The freedom of choice argument just doesn't cut it here.


MDC has a fairly long history of questioning mainstream parental choice and mainstream health choice as they affect mothers and children. I am not sure why AIDS/HIV should be exempt from this









I also think people need to keep in mind when the Mothering articles on HIV/AIDs and pregnancy were written - it was the late 90's. Mothers were being told they had HIV and in the next breath being told they had to go on AZT, which, according to a quick google search I just did, was quite the new protocal in the late 90's. Had I been unfortunate enough to receive a HIV diagnosis in pregnancy in the 90's, I doubt I would have been lining up to go on AZT. It is a strong drug, and at that point in time it was a largely untried drug. It flies in the face of conventional wisdom which says to avoid drugs in pregnancy. (Remember thalidomide? There are good reasons to be cautious about drug use during pregnancy)

I am not an AIDS denialist (what a loaded and inflammatory term!), and if I were pregnant and diagnosed with AIDS right now, I would probably go on AZT, deliver by C-sec and not breastfeed. I would research things a bit more, but if that protocol works, I would do it. This is 2012, though, not 1998.

Comparing the coverage of HIV in pregnant women in the late 1990's (when protocol was brand new) to smoking - which has long been known to be bad, is not a fair comparison.


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## eclipse (Mar 13, 2003)

Kathy, AIDS denialists deny the existence of AIDS, or at least deny that it is cause by HIV. Why is it inflammatory to call them that?


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## stik (Dec 3, 2003)

The protocol for azt in pregnancy wasn't brand new in the late 90s. The protocol for management of pediatric HIV was even less new. Either would have improved Eliza Jane's prognosis.


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## purslaine (Feb 20, 2006)

Quote:


> Originally Posted by *eclipse*
> 
> Kathy, AIDS denialists deny the existence of AIDS, or at least deny that it is cause by HIV. Why is it inflammatory to call them that?


It is inflammatory to say writing articles (back when all this information was somewhat new) that questioned breastfeeding with HIV/AIDS and AZT in pregnancy is the equivalent of denying AIDS.


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## eclipse (Mar 13, 2003)

People didn't say it did. People said that Peggy's involvement with Alive and Well (an organization that denies that HIV causes AIDS - they don't call themselves denialists, but "AIDS re-thinkers"







), especially in conjunction with the articles written about AZT (which, really? Not new information when it was written) lead people to believe that Mothering has an AIDS denialist stance.


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## herbsmd (Jun 14, 2012)

Who is addressing whom? I think there are a number of different issues here. First there is the issue of AIDS denialism. Second is the judgement (in the present) about parenting choices that were made over a decade ago. The third issue is (perpetually): "Where do we draw the moral line?" And, fourth, where does Mothering stand.

1. AIDS Denialism

Apparently AIDS denialism is a loosely defined (and highly rhetorical) term that is used to label AIDS dissenters of a number of different kinds. Ones who don't even believe HIV exists are lumped in together with those who seek alternative medical advice or even those who are just too skeptical. If you visit the Alive and Well website, the first statement you will read is this: "We present information that raises questions about the accuracy of HIV tests, the safety and effectiveness of AIDS drug treatments, and the validity of most common assumptions about HIV and AIDS. This material references a growing body of scientific, medical, and epidemiological data, and is designed to inspire much needed dialogue on these issues as well as assist people that want to make truly informed decisions about their lives and health." What is so controversial about that? If we don't ask the questions..............

And, in fact, there are some people who have HIV and, without any treatment, do NOT die...not yet, at least. Apparently these are few and far between (but statistically worth noting/studying). http://www.independent.co.uk/life-style/health-and-families/health-news/handful-of-20year-hiv-survivors-hold-key-to-discovering-vaccine-1645735.html Also, there are some people who may possibly have developed an immunity through exposure http://jid.oxfordjournals.org/content/202/Supplement_3.toc (caveat...I did not read any of this group of articles).

So, let's just say we're looking to frame the Alive and Well (or Maggiore's own) argument. The first premise might be to say that HIV does not necessarily cause AIDS. What's so denialist about that? It's true. It's valid.

There is absolutely no way to prove that HIV causes AIDS...there's just a lot of information that says that HIV often leads to AIDS. And...if some of those people who are living with HIV are not getting AIDS, there is certainly a reasonable question (even today) to ask why and how these untreated cases do not. And so, to say that there is a possibility of living with HIV without getting AIDS is also correct. We know so because there is evidence. To say that there are possible other therapies is also very likely to be true--there is no indication that the therapies that we have currently are the only ones we will ever have and, in fact, the first article implies that medical experts are still studying HIV/AIDS in search of better treatments. Can we not have an organization to raise questions about the safety and effectiveness of these new treatments or even their validity without calling them denialists? If they were denying it altogether, they wouldn't have an organization.

And what do people do when patients don't want to be treated with these drugs? What recourse do they have? Are all of them denialists, or just the ones who take it "too far". And then how far is "too far"? My girlfriend's uncle refused treatment for HIV five or six years ago...he no longer wanted to be ill all of the time (side effects of the medication). He did end up dying of AIDS-related illness, but one of the last things he kept saying was that he just wanted to die with dignity.

Was he a denialist for denying treatment?

Sure, maybe there would be doctors today who might try to legislate against a mother who tried to do what Maggiore did...but that was then. This is now. They couldn't intervene without enough evidence and she couldn't believe for the same reason.

2. Hindsight is 20/20

So, what was it like then?



> Originally Posted by *stik*
> 
> Eliza Jane Scofield didn't die in the 80s or early 90s when there was still a lot of confusion about what caused AIDS and how to treat it. She was born in 2001 and died in 2005. There was a scientific consensus about HIV and AIDS and a well-developed protocol for management of pediatric AIDS and HIV. I worked with HIV+ 8-10 year-olds at a summer camp during 1996 and 1997. They were active, healthy kids. If you didn't know their files and med regimens, you wouldn't have picked them out of the crowd (you might have thought they were a couple years younger than they were - they tended to be short for their ages). With treatment, Eliza Jane Scofield's prognosis would have been good.


Stik, I was just reading around the internet on an Rx website (looking for side effects of AZT) and I found a general timeline of the AIDS epidemic. http://www.rxlist.com/aids_retrospective_slideshow/article.htm When I got to "1998-2000" here is the small snippet they included in the slideshow: " Awareness grows that HAART has serious side effects. Treatment failures underscore the need for newer, more powerful drugs. In the ensuing years, the FDA approves new classes of drugs that make HIV treatment safer, easier, and more effective. But the drugs still do not cure AIDS."

So, when Maggiore was pregnant (at 45!) in 2001, these new HAART drugs (the "well-developed protocol") were under fire. I know it's easy to say (today) what would have/could have/should have happened, but what she was doing at the time was watched so carefully because there were a whole host of people who wanted to know if she was right. She had already successfully carried, birthed, and breastfed her first child four years earlier without medication, and was a living success story! Her actions were infuriating to doctors (like WildKingdom) who might have known differently through their experience, but for the majority of mothers out there...too many questions were unanswered and the doctor's anecdotal stories of success were no stronger than Maggiore's own. Lay people didn't see what the doctors saw, and mothers didn't want to lose their babies to a numerical probability. How is a mother supposed to give her child potentially-harmful/lethal drugs when there aren't enough good answers for her? How could someone test positive, then indeterminate, then positive, then negative, and not doubt the medical community? Her stance--a position of doubt--was what was highlighted by Mothering (and thankfully, because this is now extraordinarily newsworthy and people have more information in light of her death). Certainly people are more aware, doctors are more sensitive, and lay-people are still talking.

Let's face it--even today, HIV/AIDS is still new. We've really only known what was going on for 35 years or so, and the treatments we have are not perfected. To put a child in harms way and to lose them to an experimental drug that was introduced just a few years before...who can say that they would have done better? Sure we can say it today...but as soon as Maggiore's daughter died, all of our sentiments (and our arguments) changed. And when Maggiore died, everything changed yet again. And, even since their deaths, Alive and Well seems to have changed their arguments too. This is only natural...in light of the evidence. Still, they continue to challenge the industry. They should.

I keep trying to put myself in her shoes. I keep thinking that I would have done differently, partially because I'm much more likely to follow medical advice than go against it and risk martyrdom. But what would I have said to my doctors? Would I have asked for them to give me proof that AZT or HAART would categorically NOT harm my fetus or child? Would I have been skeptical of their diagnosis if I had received different test results? Would I be afraid to die? Would I be afraid to give my child these potentially life-saving drugs without canvassing every conspiracy theory? What did those doctors say to her? How did they explain her perfectly healthy son? How did they treat her opinions? I can't even begin to imagine all of the questions and feelings that ran through that poor mother's head and heart for four years of her pregnancy/life. And then the guilt. Would I have taken the drugs to save my life if I had not given them to my daughter? Would I regret my decision? What on earth would I do in the three years following her death... I can't even imagine it.

3. Who crosses the line?



> Originally Posted by *stik*
> 
> I respect parent choice about a lot of things. However, some choices have predictable negative outcomes for children and reflect poor judgment and reasoning on the part of parents, and I feel strongly that supporting those choices is unethical. We're not talking about formula vs. breast or raising a kid vegan or diapering philosophies here. We're talking about a woman who was so deeply in denial about her child's medical condition that she not only refused treatment for that condition leading to the child's death at age 4, she then rejected the coroner's assessment of cause of death and turned to an AIDS-denying vet for a conclusion she liked better. I know Maggiore's heart broke when her daughter died. She wrote a pretty memorable article about it. I have no doubt that this loss contributed to Maggiore's own death. They might both be alive now had Maggiore not been misled by AIDS denialists.


I haven't been to the breast vs. bottle debates on these boards but I can tell you what my argument is in a few sentences. Breastfeeding is normal; formula is medical intervention. For those mothers who bottle feed because they have a medical condition--they require medical intervention. This is unremarkable. For those mothers, however, who simply don't want to breastfeed...that's a choice that has "predictable negative outcomes" (some statistical references here: http://www.llli.org/docs/Outcomes_of_breastfeeding_June_2007.pdf ). Only through some fancy statistical calculations can you predict with accuracy the likelihood of any of these outcomes, but I'm sure we could put some mathematician on the job. Similarly, calculations could have been made for Maggiore. Those calculations might have involved the risks of a pregnancy at 45, the likelihood of developing AIDS while nursing and without taking medication while simultaneously factoring in the death risks (which were largely unknown) due to the teratogenic/lethal consequences of AZT and HAART treatment programs during pregnancy and beyond. For someone who had lived for nearly 10 years without treatment and had already had a child who did not contract HIV through an unmedicated pregnancy, childbirth, and breastfeeding relationship, you would have to account for her qualitative experience also.

As women, we continue to support the breast-vs.-formula debate as a social dilemma, which it probably is. If we call it a "lifestyle" choice, what is to say that living-without-medication is a lifestyle that we could legislate any differently? And then you get into medical interventions, such as abortion, which eliminate the possibility of a child's continued life...a drastic form of truncation. Where does the line get drawn that we can and can't make some decisions and take some risks with our bodies and our children's bodies? I don't think that Christine's daughter suffered much...that is the beautiful side to this story. No medications, no people telling her that she had HIV and trying to explain to a little baby why they were constantly poking and testing and giving her things that made her feel sick. How do we know she would have survived anyway? And who is to say that a death by 1,000 falls is better than just one?

This isn't to start ancillary debates on here--believe me...I'm sympathetic to anyone who cannot/did not choose to breastfeed, and I support women making choices about their bodies. But I'm also sympathetic to someone who chooses to walk independently of medical treatments, to challenge medical and statistical evidence based on personal experience, and I can only imagine the world that Maggiore was living in at the time. To say, today, that she was deeply in denial sounds simple. To go back in time and try to say the same thing is much harder and more complex. I have a deep belief that mothers do the best that they are able to and that no mother is willing to risk her child's life to carelessly prove a point. I think, with one child who had already seemed to escape the odds, she figured she was doing something right. I think she was doing the best she could in light of her personal evidence and with the significant doubts that there still were (still are) in the medical community regarding HIV treatments. I think the evidence was scant about the risks to the fetus (she talks about the lack of evidence all over in interviews if you google her, and also in the Mothering article) and her fears that she would lose her baby if she followed protocol were well-founded. There is evidence today that indicates that potential effects of AZT to pregnant mothers could result in resorption, spontaneous abortion or miscarriage.

Who knows what she denied at the end of her life. It is possible that she turned to denial after the death of her daughter in search of something that might appease her guilt and allow her to be a mother to her son. Who knows what I would do in that case. In her last days, we can only wonder what she was thinking. Still, it looks as if her foundation continues to challenge the medical community in light of current evidence. It is very likely that they will never receive credit for what place in society their argument supports, but without groups like Alive and Well and Mothering (and others), there would be no challenge to whatever the pharmaceutical companies decided to do. That is a legacy that Maggiore and her daughter should be proud of.

4. What Mothering supports...

I'm only taking an educated guess, but I think that Peggy really supports a variety of advocacy groups that go against the medical community, not because she is a nihilist or because she thinks all doctors know nothing--I think both of those are straw-man conclusions that tend to be drawn in haste. I think that Peggy supports these groups mainly because they advocate for the single individual (and especially a group of unified mothers who are often too busy with changing diapers to do the legwork themselves) should they be forced into having to comply with an intervention that they do not believe in. And further many of these organizations encourage people/mothers to stand for these principles with the belief that, if they feel them strongly enough, they probably have some validity to their argument to back it up. The process is to articulate the argument and work through it, assertion by assertion.

Too often, I think people find the expression of this "devil's advocacy" to mean that people are not willing to accept what is widely held to be objective evidence. Instead, what sifts out in the end is that there are a number of mothers who are intelligent enough to see and challenge the subjectivity of real humans deriving hypotheses and performing inductive scientific tests on them, understand the corruptibility of power (big pharma), and yearn to find a self-expression on some middle ground which accounts for their own qualitative experiences and perhaps a less-materialistic vision.

And if that is not satisfactory to those who are entirely materialists, Peggy is not Mothering. Mothers are mothering. If she supports Alive and Well, that is certainly her prerogative. But her prerogative is not the voice of all mothers. I believe she created Mothering to be that unified voice.


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## stik (Dec 3, 2003)

We don't know if or how much Eliza Jane Scofield suffered. She died of pneumonia, which is an uncomfortable and terrifying disease for a child to have.

There are a lot of beautiful things in the world, but four-year-olds dieing of pneumonia aren't among them. I wish a painless death for the dieing for those who choose that path. Pneumonia isn't painless. Eliza Jane Scofield didn't choose, and didn't have to die.


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## herbsmd (Jun 14, 2012)

Quote:


> Originally Posted by *stik*
> 
> We don't know if or how much Eliza Jane Scofield suffered. She died of pneumonia, which is an uncomfortable and terrifying disease for a child to have.
> There are a lot of beautiful things in the world, but four-year-olds dieing of pneumonia aren't among them. I wish a painless death for the dieing for those who choose that path. Pneumonia isn't painless. Eliza Jane Scofield didn't choose, and didn't have to die.


You can't take her death out of context and say four-year-olds dying of pneumonia are beautiful. No one would agree with such a ridiculous statement, least of all myself.

But I believe that the reports which claim that she only had symptoms and a diagnosis a week before her death. She was treated with an antibiotic which caused nausea and vomiting (common). She was small for her size, but was otherwise normal.

No one chooses to be born and very few of us choose how we die. Once a child is born, it is my feeling that you can't retract the effort that got them there in the first place. Are you intimating that her death could have been prevented by her non-existence?

Now, assuming that we could change the circumstances around the events of her birth, how are we to know that we wouldn't have caused her spontaneous abortion or her termination at 8 months of gestation, or a much more painful and sorrowful death at 19? We don't. It's just simple enough to say that she died quickly and with relative (relative to years and years of suffering and a consciousness of disease which young children are not fully capable of possessing) painlessness.

There is no such thing as a beautiful death of a four-year-old. That statement just derailed the argument for no particular good reason.


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## Imakcerka (Jul 26, 2011)

Quote:


> Originally Posted by *herbsmd*
> 
> You can't take her death out of context and say four-year-olds dying of pneumonia are beautiful. No one would agree with such a ridiculous statement, least of all myself.
> 
> But I believe that the reports which claim that she only had symptoms and a diagnosis a week before her death. She was treated with an antibiotic which caused nausea and vomiting (common). She was small for her size, but was otherwise a happy child as documented


So... a picture of health. Huh... then what happened?


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## WildKingdom (Mar 26, 2008)

I just...

I'm speechless. I truly am.


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## philomom (Sep 12, 2004)

Quote:


> Originally Posted by *daifuku*
> 
> "It really is about whether or not we are prepared to accept a parent's freedom of choice with an issue like HIV/AIDS. Are we willing to accept freedom of choice in regards to cancer medication? medication for children? vaccinations? circumcision? co-sleeping? homebirth? breastfeeding?"
> 
> What about second hand smoke? Seat belts? Lead paint exposure? Corporal Punishment? Why accept and advocate for a parent's freedom of choice to let their children die of AIDS out of ignorance, but not freedom to let their kids develop asthma or lung cancer? Brain damage? Etc? The freedom of choice argument just doesn't cut it here.


I agree there are lines here. But most responsible parents agree that protecting your child from fatal harm is the primary job as a parent. Do AZT drugs and/or denying AIDS result in fatal harm to infants and small children? I would bet yes.

I'm fortunate in that I have not had to make hard choices like that in my life. I do have one dd with a chronic illness and finding the best path for her that damages her body the least with the cooperation of her medical team has been quite the challenge for me and the hubby.


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## Imakcerka (Jul 26, 2011)

D for Denial.

Quote:


> Originally Posted by *herbsmd*
> 
> You can't take her death out of context and say four-year-olds dying of pneumonia are beautiful. No one would agree with such a ridiculous statement, least of all myself.
> 
> ...


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## bri276 (Mar 24, 2005)

Quote:


> Originally Posted by *WildKingdom*
> 
> I just...
> I'm speechless. I truly am.


You and I are experiencing an entirely different reality than those who will not accept any WHO or CDC or NIH information that contradicts their beliefs, even if they a) read it and b) understand it. People who google a few links, don't bother to read them, but disseminate potentially dangerous philosophies about how the meds are theoritically worse than the virus, or the tests are wrong, are in a parallel universe where facts as we know them are merely possibilities.

One thing I will say is that it is an enormous industrialized world privilege to sit in contempt and suspicion of drugs that have given many people years they otherwise would not have lived through. An adult choosing to stop treatment is not at all comparable to a parent refusing to give it to their child- this is true for many diseases, including HIV/AIDS.


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## herbsmd (Jun 14, 2012)

Quote:


> Originally Posted by *Imakcerka*
> 
> So... a picture of health. Huh... then what happened?


Did I say she was a picture of health? I'm not a denialist and, without reading the autopsy report, I tend to believe the initial diagnosis that she died of PCP. Never did I imply that she was a picture of health, nor did I imply that four-year-old children dying is a beautiful thing. Hmmm.....

Since the mother was investigated and not found guilty of child neglect, I think it is reasonable to assume that this was not a case of abuse. Was her mother misguided? Perhaps, but so many factors go into an argument of that magnitude that it's harder to make an unbiased call. I believe that her experience as a second-time mother gave her enough knowledge to know whether there was suffering of a concerning magnitude. In fact, somewhere I read that her illness progressed very rapidly at the end. I believe (and so did the investigators) that there wasn't a thought about it being so serious because there didn't appear to be any discomfort. At the moment when her daughter started complaining, she took her to the doctor where the diagnosis was made.

That...the rapid unfolding of a gravely unfortunate circumstance is, at the very least, the course of natural events from some time during/after her birth. Nature is cruel, but there are so many times that I think medicine and knowledge can amplify the cruelty...particularly with little children. There is still, to me, a sense of serenity in hearing that she suffered very little.

If anyone is looking to argue the fact that she did not suffer, you have to provide some kind of evidence to say that she suffered...and that she suffered more than she would have if she had lived longer with medication.


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## eclipse (Mar 13, 2003)

oh my god. I can't even. . .


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## Imakcerka (Jul 26, 2011)

Quote:


> Originally Posted by *herbsmd*
> 
> Did I say she was a picture of health? I'm not a denialist and, without reading the autopsy report, I tend to believe the initial diagnosis that she died of PCP. Never did I imply that she was a picture of health, nor did I imply that four-year-old children dying is a beautiful thing. Hmmm.....
> 
> ...


Empathy over trying really really really hard to be right goes a long way.


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## herbsmd (Jun 14, 2012)

Quote:


> Originally Posted by *bri276*
> 
> You and I are experiencing an entirely different reality than those who will not accept any WHO or CDC or NIH information that contradicts their beliefs, even if they a) read it and b) understand it. People who google a few links, don't bother to read them, but disseminate potentially dangerous philosophies about how the meds are theoritically worse than the virus, or the tests are wrong, are in a parallel universe where facts as we know them are merely possibilities.
> One thing I will say is that it is an enormous industrialized world privilege to sit in contempt and suspicion of drugs that have given many people years they otherwise would not have lived through. An adult choosing to stop treatment is not at all comparable to a parent refusing to give it to their child- this is true for many diseases, including HIV/AIDS.


Woah...just to make sure you don't lump me into the denialist camp, it would be helpful for me to stake my claim that my personal opinion is most often on the same page as the WHO, the CDC, and the NIH. Then again, it isn't eleven years ago and no one has told me I wasn't HIV positive, or might be, and should take drugs that could complicate or terminate my pregnancy after I've just birthed and nursed a perfectly healthy baby.

Like I said, I birthed my three babies in the hospital with pitocin, and two with epidurals. My children are all up-to-date on vaccinations and we have yearly doctor visits with a very mainstream pediatrician. BUT, I recognize the social and philosophical importance of defending informed choice--INFORMED means that you have to account for the evidence WHILE taking into regard the potential risks. KNOWING what you DON'T KNOW is part of calculating your risk. If you are inundated with unknowns, what choice do you choose? Necessarily intervention? New medications and most interventions come with risks. The pharmaceutical companies and doctors are not always aware of (or do not always disclose) every calculable risk.

Or do doctors always know everything first?


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## herbsmd (Jun 14, 2012)

Quote:


> Originally Posted by *Imakcerka*
> 
> Empathy over trying really really really hard to be right goes a long way.


So you challenge the child-welfare investigators' findings? I didn't suspect that they didn't do their job, and I didn't ever get the feeling (in reading a number of Maggiore's interviews) that this was egotistically motivated. I think she felt that she was right and thought that she was protecting her child. I don't think she was given a good chance to consider the consequences, partially because of the hype surrounding her healthy son, and partially because new treatment had just been found to be potentially unsafe.


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## herbsmd (Jun 14, 2012)

And just to make any other opinions known...I believe that the data supports a highly-likely conclusion that HIV causes AIDS. I know for certain that it's an unprovable claim (that's a philosophical issue), but I believe that there's just as much evidence to support the HIV-AIDS connection as there is supporting the polio virus-polio connection or the herpes virus-herpes connection (though there's no way to prove that these viruses cause their respective diseases....it's just a high statistical probability which is NOT the same thing as "proof").

So...no, I don't think any of my opinions would make me a denialist. But I see the importance of arguing treatment options...


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## WildDoula (Nov 3, 2010)

I think this lifestyle (or whatever you want to call it, doesn't really matter) is a choice, and should be respected. Parents do what they think is best for their children, they don't have some hidden agenda to harm or kill them.

Who are you to say what is best for someone else, someone that you've never met and have no interest in other than the topic of debate?

MDC supports a wide range of viewpoints, some clearly more popular than others. But it's really sad that we are all so judgmental and harsh towards each other.


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## eclipse (Mar 13, 2003)

I think it's fine to judge a parent who withholds treatment with a high probability of sustaining both life and quality of life from their child. Of all the things people judge other parents for at MDC, this is the parenting choice that people are saying "don't judge" about?


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## herbsmd (Jun 14, 2012)

Quote:


> Originally Posted by *eclipse*
> 
> I think it's fine to judge a parent who withholds treatment with a high probability of sustaining both life and quality of life from their child. Of all the things people judge other parents for at MDC, this is the parenting choice that people are saying "don't judge" about?


I'm not saying that I wouldn't be concerned today. I think that today we have ten years of evidence behind us to give us much better indications of what the risk/benefit ratio is. But I think things were vastly different ten years ago. If we've really only been understanding this disease for 35-ish years, 10 years is almost 1/3 of the entire statistical package...and, being the most recent ten years makes it the most important.

Today, if it happened to a friend of mine, I would feel compelled to give her my personal endorsement (though, I'm not a medical professional and so I don't think I'd emphasize my opinion) to strongly consider the medication. But, in the long run, the decision would be her burden and would be filled with a host of feelings that I would merely try my best to understand. It would be absolutely tragic to have to watch a repeat of this incident. I don't know that I would be the kind of friend who could support that kind of a choice today.


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## purslaine (Feb 20, 2006)

Quote:


> Originally Posted by *herbsmd*
> 
> I'm not saying that I wouldn't be concerned today. I think that today we have ten years of evidence behind us to give us much better indications of what the risk/benefit ratio is. But I think things were vastly different ten years ago. If we've really only been understanding this disease for 35-ish years, 10 years is (statistically) almost 1/3 of the entire statistical package...and, being the most recent ten years makes it the most important.


Agreed. I think there is a lot of judgment being made against a woman who was doing the best she could with the information she had at the time.

I agree with imakcerka on empathy over being right, but it applies to this situation as well.

Imagine finding yourself pregnant.....

Now imagine the doctors telling you that you probably have this disease (although pregnancy can give false negatives) and that you should go on this brand new drug that has not been tested much, might cause miscarriage or birth defects, but you really, really need to go on it. I can understand her hesitation.

I would not understand a mothers hesitation to follow medical protocol in 2012 given the evidence we have now have - but in the late 1990's (when some of the MDC articles were written) or 2000 (when Eliza was born), yeah, I understand hesitation......


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## purslaine (Feb 20, 2006)

Quote:


> Originally Posted by *bri276*
> 
> You and I are experiencing an entirely different reality than those who will not accept any WHO or CDC or NIH information that contradicts their beliefs, even if they a) read it and b) understand it. People who google a few links, don't bother to read them, but disseminate potentially dangerous philosophies about how the meds are theoritically worse than the virus, or the tests are wrong, are in a parallel universe where facts as we know them are merely possibilities.


Where are you getting this from? Who are you talking about?


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## bri276 (Mar 24, 2005)

Sorry if you don't have time to read back, Kathy. What I said is pretty obvious, in context.


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## eclipse (Mar 13, 2003)

I'm pretty sure that when Eliza was born, and certainly as she got older, AZT was pretty much the best evidence based treatment for HIV available. Eliza Jane was born the same year my oldest son was, and I knew that - and I hadn't even tested positive for HIV, which would have sent me scrambling for the latest *scientific* research on the virus. IIRC, her mother wouldn't even let her be tested for HIV. Yeah, sorry, I'm going to judge away on that.


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## purslaine (Feb 20, 2006)

Quote:


> Originally Posted by *eclipse*
> 
> IIRC, her mother wouldn't even let her be tested for HIV. Yeah, sorry, I'm going to judge away on that.


Well, if this is correct it is somewhat judge-worthy.

As time went on, and evidence mounted in favour of AZT, I think she should have considered testing.

In any event, I am going to bow out of this conversation. I have no interest in crucifying a dead women for choices she made - choices, that certainly at the beginning, she did lack evidence and clarity on. Yes, she got it wrong - and did she ever pay for it. It could have gone the other way - hindsight is 100% and all that.

I am also not interested in critisizing MDC for printing articles 12 years ago that adressed HIV/AIDS and motherhood. Why would I? They were good articles that explored what some HIV positive moms-to-be were going through. This is what MDC does (or did) - it asks probing questions of mothering and practices pertaining to it.


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## Imakcerka (Jul 26, 2011)

Quote:


> Originally Posted by *kathymuggle*
> 
> Well, if this is correct it is somewhat judge-worthy.
> 
> ...


I think as time goes on people wonder if the belief is still the same. I think it's worth visiting for clarification.


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## herbsmd (Jun 14, 2012)

Quote:


> Originally Posted by *eclipse*
> 
> I'm pretty sure that when Eliza was born, and certainly as she got older, AZT was pretty much the best evidence based treatment for HIV available. Eliza Jane was born the same year my oldest son was, and I knew that - and I hadn't even tested positive for HIV, which would have sent me scrambling for the latest *scientific* research on the virus. IIRC, her mother wouldn't even let her be tested for HIV. Yeah, sorry, I'm going to judge away on that.


I think AZT was the drug of choice at the time, as the HAART therapy was the highly-successful one which was also found to have serious side effects. I think she was worried about birth defects during pregnancy or losing the pregnancy, and also didn't want her daughter tested because of *her* test results which turned out to be positive, inconclusive, negative, and then positive again. But she DID have her son tested............. Why would she have one tested and not the other? I just confirmed that she did not test Eliza--at least there was no record of a test in her medical records. Do you think she had her tested privately? I read somewhere (but I can't find it now and I'm too tired) that she had her son tested multiple times (sounds fearless, no?) and said that he never tested positive. Why was she not as fearless with her daughter?

Are her husband and son still alive? I suppose so since there is no new news on this case.


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## WildKingdom (Mar 26, 2008)

Quote:


> Originally Posted by *herbsmd*
> 
> I think AZT was the drug of choice at the time, as the HAART therapy was the highly-successful one which was also found to have serious side effects. I think she was worried about birth defects during pregnancy or losing the pregnancy, and also didn't want her daughter tested because of *her* test results which turned out to be positive, inconclusive, negative, and then positive again. But she DID have her son tested............. Why would she have one tested and not the other? I just confirmed that she did not test Eliza--at least there was no record of a test in her medical records. Do you think she had her tested privately? I read somewhere (but I can't find it now and I'm too tired) that she had her son tested multiple times (sounds fearless, no?) and said that he never tested positive. Why was she not as fearless with her daughter?
> 
> Are her husband and son still alive? I suppose so since there is no new news on this case.


Wrong. She had her son tested after Eliza Jane's death. Never before. She played the odds with both of her kids. She won with Charlie and lost big time with EJ.

http://www.thedailybeast.com/newsweek/2000/08/27/the-hiv-disbelievers.html (story originally published in 2000 in Newsweek). That's how long I've been following Maggiore's story.


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## nstewart (Nov 6, 2010)

Quote:


> Originally Posted by *Imakcerka*
> 
> I think as time goes on people wonder if the belief is still the same. I think it's worth visiting for clarification.


I thought that was the initial point of this thread. It's what I'm really interested in knowing.


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## lamamaloca (Jan 19, 2010)

I think the issue is that Mothering has not repudiated disseminating these dangerous views. This is a life or death issue, the correct stance of a parenting magazine shouldn't be controversial.

Quote:


> Originally Posted by *kathymuggle*
> 
> Well, if this is correct it is somewhat judge-worthy.
> 
> ...


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## kaylee18 (Dec 25, 2005)

Quote:


> Originally Posted by *katelove*
> 
> I haven't read the articles because, as I mentioned, I couldn't find them online. If anyone has links they could post I'd appreciate it.


There are links to five of these articles in my prior post (#8 in this thread, quoted below). I have read all of them. All of those blue text lines below are links; just click to view each article. To see the one that's listed last, I had to click on the "Impatient?" link that appeared (bottom right), so that the archived version of the page would display.

Quote:


> Originally Posted by *kaylee18*
> 
> Peggy, the AIDS denialist organization, Alive and Well AIDS Alternatives, which was founded by Christine Maggiore, still lists you as a member of their advisory board: http://www.aliveandwell.org/ (if you click on "about us" and scroll down, all board members are listed). Are you still a board member? What is your position on HIV/AIDS denialism? What is the position of Mothering.com?
> 
> ...


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## Adaline'sMama (Apr 16, 2010)

So, what exactly is the point of being on the board of Alive and Well?


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## herbsmd (Jun 14, 2012)

Quote:


> Originally Posted by *WildKingdom*
> 
> Wrong. She had her son tested after Eliza Jane's death. Never before. She played the odds with both of her kids. She won with Charlie and lost big time with EJ.
> 
> http://www.thedailybeast.com/newsweek/2000/08/27/the-hiv-disbelievers.html (story originally published in 2000 in Newsweek). That's how long I've been following Maggiore's story.


I can't read this a.m. but I will read it later. That seems more likely that she wouldn't test either. Somewhere I thought I remembered her saying that her husband (after a decade of unprotected sex) and her son had never tested positive for HIV. I thought, for some reason, that that statement was before her daughter was born. I'll see what I can dig up after I read your article. It could very well have been after her daughter died.


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## AIDSisOver (Jul 16, 2012)

I've tried three times to reply to this but somehow my post disappeared before I could complete it. I was diagnosed with HIV more than 20 years ago. I'm alive and well today because I didn't believe what the doctors were saying. Never before in history did an antibody (which is what they test for) cause disease. AIDS is a big lie and the biggest blunder in medical history. Don't take my word for it. Learn for yourself. There are at least 200 videos on Youtube on the subject and plenty of verifiable web sites. Check out OSMJ.org, the Organization for Scientific and Medical Justice.


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## NoraFlood (Dec 21, 2008)

Quote:


> Originally Posted by *AIDSisOver*
> 
> I've tried three times to reply to this but somehow my post disappeared before I could complete it. I was diagnosed with HIV more than 20 years ago. I'm alive and well today because I didn't believe what the doctors were saying. Never before in history did an antibody (which is what they test for) cause disease. AIDS is a big lie and the biggest blunder in medical history. Don't take my word for it. Learn for yourself. There are at least 200 videos on Youtube on the subject and plenty of verifiable web sites. Check out OSMJ.org, the Organization for Scientific and Medical Justice.


On the off-chance you are being sincere: the antibody does not cause disease, the virus does. That is well-established. The antibody confirms exposure to the virus. AIDS is not a lie. And if you are getting medical information from Youtube, you are making an enormous mistake.


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## QueenOfTheMeadow (Mar 25, 2005)

NoraFlood- Please edit out the first line of your thread. It does not contribute to a comfortable and respectful atmosphere.


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## LLQ1011 (Mar 28, 2012)

Quote:


> Admin: quote removed due to member edit to comply with mod request


20 years ago I am pretty sure they did an older testing method that tested for antibodies. I think thats what she is reffering too. Certain antibodies are linked to multiple diseases and we used to not know that. Like I test positive for anticardiolipin antibodies because I have aps. But this used to be the antibody they tested for syphilis. So I think she is refering to the fact that they did an antibody test and she got a false positive for another reason.


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## NYCdoula (Aug 2, 2012)

It is so interesting to me that this thread is active right now. I have been following for decades the editorial choices of Mothering Magazine around HIV- and AIDS-related issues. It was clear then, as it is clear now, that the Editor is, by refusing to come out AGAINST claims that HIV is not truly known to cause AIDS, and by instead providing a platform for people who wish to deny that breastfeeding is a risky behavior for transmission of HIV--(and, insult of insults, to encourage terrible theoretical slippage in implying that the advocates who call for HIV positive mothers to not breastfeed are somehow in the same camp as all the other forces that can make breastfeeding quite difficult in our society)--it is clear that by offering these positions as something other than dangerous and deadly, but merely information so as to make an informed choice, she is de facto supporting what most people call "AIDS denial." Here, as elsewhere in AIDS denial literature, it is framed by Peggy O'Mara as "informed choice" and by some other people as healthy skepticism of the medical establishments overreach. So then we get, in the culture of the natural parenting community, a slippage between the support of normal birth, breastfeeding, attachment parenting, and what can, in my opinion, only be called AIDS denialism.

In fact, this breed of "skepticism" has been very effectively promoted by Mothering, whether or not the Editor will ever openly admit it. (And she hasn't so far, so we can't expect her to now.) I mean, here we are having a long, drawn out discussion over it, and many of us were not even aware of the ongoing issue in Mothering: however, there are still people on this board debating about whether to forgo HIV testing, or, in the case of a positive status, to not breastfeed and not taking an HIV drug cocktail during pregnancy as possible healthy choices. These views have insidiously infiltrated the AP community at large. Last year, when I was at the Miles for Midwives fundraising race in NYC, I approached the head organizer for Holistic Parents NYC (a large, loose-knit organization) and asked about the group's stance on HIV, and while I don't remember if she said they have an official stance or not, I do remember that she immediately began to "educate" me on the fact that it hasn't been proven that HIV causes AIDS. Upset by her proud and wacky misinformation, I returned to the friends who I was with. When I shared my dismay with my spitfire, single mother, doula friend, she immediately began to spout the same misinformation at me too, saying, "whatever you say, you can't deny that there have been many studies, so much evidence that calls into question the supposed relationship between HIV and AIDS."

These cancerous views are alive and well in the AP and "holistic" parenting communities. I have no doubt that Peggy O'Mara's editorial choices played a major role in their spread. It is unfortunate that she continues to portray her position as one of being journalistically unbiased.

This editorial position has absolutely discredited Mothering magazine in my eyes. AIDS is not over in the United States, and as long as we are a responsible community, supporting responsible journalism, and responsible parenting, we must demand that the demon lurking in the background of this debate be faced: HIV is associated in peoples mind with gay men, with death, with drug users, prostitutes, and poverty, and yet it can affect anyone. It is deeply associated in the public mind with sexual shame and religious punishment. In order for us to be responsible, we must not let that association spook us or influence us into living and raising our children as if HIV is something that only affects other people. Every human being has a sexuality. Every human body is vulnerable. Each of our children will have a sexuality and many of us will be blessed with the gift of a gay son, whether or not we are ready for it. One in five gay men who are living in urban areas are HIV-positive today, and HIV is now the leading cause of death for black women aged 25 to 34. We need to learn to talk with our sisters, brothers, doctors AND children about sexuality, shame, and safer sex practices. We need to give the gift of correct information, not misinformation, so that mothers can, as you say, make informed choices.

My guess is that this is the real issue being talked around on this thread.


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## herbsmd (Jun 14, 2012)

Quote:


> Originally Posted by *NYCdoula*
> 
> It is so interesting to me that this thread is active right now. I have been following for decades the editorial choices of Mothering Magazine around HIV- and AIDS-related issues. It was clear then, as it is clear now, that the Editor is, by refusing to come out AGAINST claims that HIV is not truly known to cause AIDS, and by instead providing a platform for people who wish to deny that breastfeeding is a risky behavior for transmission of HIV--(and, insult of insults, to encourage terrible theoretical slippage in implying that the advocates who call for HIV positive mothers to not breastfeed are somehow in the same camp as all the other forces that can make breastfeeding quite difficult in our society)--it is clear that by offering these positions as something other than dangerous and deadly, but merely information so as to make an informed choice, she is de facto supporting what most people call "AIDS denial." Here, as elsewhere in AIDS denial literature, it is framed by Peggy O'Mara as "informed choice" and by some other people as healthy skepticism of the medical establishments overreach. So then we get, in the culture of the natural parenting community, a slippage between the support of normal birth, breastfeeding, attachment parenting, and what can, in my opinion, only be called AIDS denialism.
> 
> ...


Just to be straightforward here, inductive reasoning (i.e. the scientific method) never PROVES anything. It only gives statistical evidence in support of a certain viewpoint. Those women are right to say that it has not been proven that HIV causes AIDS. All we know is that there is an abundance of evidence linking the two together in succession. Of course that link is strong--the statistical evidence is very high--and it isn't much of a leap to suspect that HIV causes AIDS. Nevertheless, you cannot say that inductive reasoning ever proves anything. It absolutely does NOT have that level of certainty.


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## ricci1003 (Aug 12, 2012)

''Why does society condone the use of test kit﻿ disclaimers for legal purposes to protect rich corporations while denying the relevance of such disclaimers for medical purposes to protect poor Africans, gays and drug users from suicide, murder, divorce, abortion, stigma, life imprisonment and life long regimens of toxic drugs? ''

What about Africa? I had to go and find out for myself: Social Worker Shares Scepticism Re: African ''AIDS'' and E.U. Hetero ''HIV Epidemic''


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## ricci1003 (Aug 12, 2012)

Nobel Loreate and discoverer of 'HIV', Luc Montagnier: The body can naturally get rid of 'HIV'


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## LLQ1011 (Mar 28, 2012)

HIV turns to aids in over 90% of infected people.... Ebola kills at a 90% rate. Why is there even a question. We do not question Ebola??? I feel like this entire debate is base don the ridiculous fact that the people who discovered the virus named its dormant form something different than its end stage form. With a less than 10% carrier rate that never gets to the extreme end cycle of the disease.

The bodies ablity to cure its self of the disease is not in question here. There are people who's t-cell that combats the virus is presents and works. The issue is are HIV and AIDS related.


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## bluedaisy (Sep 5, 2008)

This is an interesting debate to me because I work in the development world in Africa - I have seen the incredible impacts ARVs can have on AIDS patients, and I FULLY believe that HIV causes AIDS. I very much believe the CDC, WHO, etc stance on HIV/AIDS and I am very grateful for the development in AIDS meds that we have seen.

HOWEVER, I do not agree with the idea that people should be forced to take meds or give their kids meds. I think that is a slippery slope and I fully agree with informed choice. Eliza's death was very much a tragedy; however, AZT was a very reactive drug and I would guess that there were also babies and children who died as a result of TAKING the drugs. Their deaths are just as tragic. No medicine is without risk. I also know people who were on AZT and it has some very nasty side effects. We, as mothers, need to weigh the risk vs benefit - As another poster said, hindsight is 20/20. I personally do not agree with Christine's choices, but I do not think it is as black and white as some are making it to be, and I think she had the right to choose whether or not to give herself and her child medicine. All medical procedures carry risks, and drugs/vaccines are recalled all the time because of unintended consequences.


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## Peggy O'Mara (Nov 19, 2001)

Right on, bluedaisy.


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## ricci1003 (Aug 12, 2012)

Maybe there is another group questioning aetiology of ebola, but for now at least WHO is not claiming that 40 million people are ''living with ebola'' and in need of ''life saving'' drugs. Assuming your percentage is accurate for ''positivity'' leading to ''AIDS'' then don't you think that a serious determining factor could well be the multi-billion dollar fear campaign on its own? ''Why does society condone the use of test kit﻿ disclaimers for legal purposes to protect rich corporations while denying the relevance of such disclaimers for medical purposes to protect poor Africans, gays and drug users from suicide, murder, divorce, abortion, stigma, life imprisonment and life long regimens of toxic drugs? '' From reading in the section of ''limitations'' of the ELISA test used the world over I recall the text: ''At present there is no recognised standard for establishing the presence or absence of HIV in human blood.''


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## ricci1003 (Aug 12, 2012)

bluedaisy, I've also spent a number of years in the field in Uganda and observed ''development'' and how funding for ''health'' and obscure activities gets channeled into mainstreaming ''AIDS'' programes. Seeing patients recover from immune deficiency must be a compelling observation for anyone, but now if you are honest they didn't all do so well did they? Many of them deteriorated once given ''life saving'' drugs, even if they had no symptoms at the point of medication. Of the many others who responded well to the drugs I think you were consistently quick to assume that because a patient does respond well that provides the proof that s/he had ''HIV''. The main threat of immune deficiency has been bacteraemia in Africa for thousands of years. The only thing that has changed over the last 30 years is a WHO funded epidemic of antibody testing. You recall that 60% of ''new infections'' are among clients without symptoms so it doesn't take an illusionist to pull off a stunt to justify the claim that all these ''patients''' are doing so well even several years down the line. I have some questions for you. Perhaps you have also worked in Uganda. Given that ''access'' to '' life saving'' drugs has been a problem in Sub Saharan Africa how did the population of Africa, in particular Uganda, manage to double between 1984 and 2004 ?

What are the 10 top causes of mortality in any of the African countries you have worked in?

Is it the frequency at which Africans test '''positive'' that continues to convinces entire communities and medical workers/volunteers that the people are indeed ignorant and promiscuous? What if there are 70 conditions other than ''HIV'' causing all those reactions on ''HIV tests''? Who would that be a shame for and who would it be lucrative for? In both cases a stupendous self fulfilling prophecy would be created. ''Why does society condone the use of test kit﻿ disclaimers for legal purposes to protect rich corporations while denying the relevance of such disclaimers for medical purposes to protect poor Africans, gays and drug users from suicide, murder, divorce, abortion, stigma, life imprisonment and life long regimens of toxic drugs? ''

Since ARVs have been shown to be antibacterial and anti-fungal it should come as no surprise at all that when used on a population where bacteraemia is endemic recipients respond well. In Uganda alone there are 8000 AIDS NGOs all claiming to be fighting ''AIDS'' , yet none has any interest in any of the real and millennia old immune deficiency causing pathogens.


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## ricci1003 (Aug 12, 2012)

Flavia - Recounting Friend's Conflicting "HIV Test" Results


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## Cathy K (May 9, 2021)

Peggy O'Mara claims in the thread that pregnancy can cause false positive HIV tests and that Mothering Magazine's coverage lead to changes in breastfeeding recommendations. To clarify, women who are pregnant are more likely to take an HIV test than the general population, but pregnancy doesn't cause false positives. HIV positive women with access to clean water are still discouraged from breastfeeding because of the high risk of transmission.

I stopped reading Mothering magazine after the Christine Maggiore story in 2001. Christine and the child she was pregnant with at that time both died from HIV complications. I came on here to see if Mothering had issued an apology for that coverage in the last two decades. They have not.


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