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Shari Margolese

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Don't Judge Me for Having HIV and Children

Posted: 12/06/2012 2:09 pm

I am a woman living with HIV, but I am a woman first. As a woman, I have similar hopes, dreams and desires as women who are not HIV positive, including having a family. Twenty years ago when I was first diagnosed, people living with HIV were discouraged from having children due to lack of methods to prevent our children from becoming infected with HIV. Families who chose to have children during the early days of the epidemic were highly stigmatized by the medical community, family and friends leading many people, including myself to forgo or delay starting or increasing our families due to lack of support.

Today, highly effective methods are available which, when taken correctly, can reduce the risk of HIV transmission to an infant to almost zero. Yet, despite volumes of medical evidence and thousands of children born HIV free globally, people living with HIV face judgement and condemnation when we choose to have children.

According to the World Health Organization, all couples and individuals have the right to decide freely and responsibly the number, spacing and timing of their children and to have the information and means to do so, and the right to attain the highest standard of sexual and reproductive health. They also include the right of all to make decisions concerning reproduction free of discrimination, coercion and violence. "These rights have long been denied to people living with HIV.

Reproductive justice is a concept linking reproductive health with social justice. It is the realization of economic, social and political power and resources to make healthy decisions about our bodies, sexuality and reproduction for ourselves, our families, and our communities in all areas of our lives. What are the reproductive justice issues for people living with HIV in Canada? There are many.
Some actions are obviously unjust and infringe on the human rights of people living with HIV such as coerced termination of pregnancy, coerced sterilization, denial of medical services and differential treatment during hospital stays. Instead of the gloriously joyful experience of birth that every parent has the right to experience, m any people with HIV face isolation, unnecessary and inappropriate disclosure of their HIV status to friends and family by health care providers, extraordinary, over-the-top precautions such as double gloving to take a blood pressure.

Other injustices are not so obvious. These include the public condemnation of people living with HIV who have children. All you have to do is read the comments by pitchfork wielding readers on a story about people with HIV having babies to know that there is little support in the general public for our desires and intentions to have children. Comments such as, "those people are selfish to want to be parents", " why don't they just adopt", and that we should be charged with "murder" for exposing our children to HIV are uninformed and based on prejudice not fact. People with HIV not only face stigma and judgement related to their HIV status, there are also other stigmas faced by our communities including drug use, sexual behaviour and racism.
Sadly these prejudices and attitudes are not only common among the general population but also exist within the medical community. These types of comments and actions, especially by healthcare providers, can traumatize people with HIV and may even prevent some of us from seeking the pregnancy planning, prenatal and antenatal services required to create healthy families. The truth is that no matter how much research we do and how much we evidence and support we provide within the HIV community to those of us who want to have children, stigma from the public remains the greatest barrier to achieving reproductive justice for people living with HIV in Canada.


World AIDS Day: 10 New Things We've Learned About HIV/AIDS This Year

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  • 1. Most Don't Have Their Infection Under Control

    Only one quarter of the 1.1 million <a href="http://www.cdc.gov/nchhstp/newsroom/docs/2012/Stages-of-CareFactSheet-508.pdf">people with HIV</a> have their <a href="http://www.huffingtonpost.com/2012/07/27/hiv-under-control-1-in-4_n_1711260.html">condition under control</a>, where "under control" means the virus has been suppressed, according to a report released this summer by the Centers for Disease Control and Prevention. "Only if we get <a href="http://www.philly.com/philly/health/HealthDay667108_20120727_Only_1_in_4_Americans_With_HIV_Has_Virus_Under_Control__CDC.html">everyone under regular care</a> for HIV/AIDS can we recognize the full benefits of treatment and prevention," Irene Hall, an epidemiologist at the CDC and one of the authors of the report, told HealthDay. <em><strong>CORRECTION</strong>: The first sentence has been reworded to more accurately reflect the number of people with HIV.</em>

  • 2. Bone Marrow Transplants Could Play A Part In Being HIV-Free

    Two men with HIV and cancer no longer have <a href="http://www.huffingtonpost.com/2012/07/26/hiv-free-men-bone-marrow-transplants_n_1707505.html">detectable blood levels of the virus</a> after receiving bone marrow transplants for their cancers, news outlets reported this year. Doctors were unable to <a href="http://www.huffingtonpost.com/2012/07/26/hiv-free-men-bone-marrow-transplants_n_1707505.html">find any traces of HIV</a> in the men's cells after they received the bone marrow transplants while also being treated with antiretrovirals. The finding "suggests that under the <a href="http://abcnews.go.com/blogs/health/2012/07/26/two-more-patients-hiv-free-after-bone-marrow-transplants/">cover of anti-retroviral therapy</a>, the cells that repopulated the patient's immune system appear to be protected from becoming re-infected with HIV," Dr. Timothy Henrich, of Brigham and Women's Hospital, told ABC News. However, the Boston Globe pointed out that it's still too soon to say that these men have been<a href="http://www.huffingtonpost.com/2012/07/26/hiv-free-men-bone-marrow-transplants_n_1707505.html"> full-on <em>cured</em></a> of HIV, since they are still on the anti-retrovirals. There's no firm word on whether they will go off of the medication.

  • 3. No-Cost HIV Treatment Could Cut New Infection Rates

    New <a href="http://www.huffingtonpost.ca/2012/11/27/free-hiv-drugs-decrease-infection-bc_n_2200393.html">HIV infection rates</a> can be dramatically lowered by making antiretroviral drugs free, a study from Canadian researchers found. The Canadian Press reported on the study, conducted by B.C. Centre for Excellence in HIV-AIDS researchers, which showed that British Columbia -- a province that offers <a href="http://www.huffingtonpost.ca/2012/11/27/free-hiv-drugs-decrease-infection-bc_n_2200393.html">free access to antiretroviral therapy</a> -- had the lowest rate of new HIV infections over a more-than-10-year period, compared with Ontairio and Quebec.

  • 4. Many Young People Don't Know Their HIV Status

    More than half of HIV-infected young people are <a href="http://www.huffingtonpost.com/2012/11/27/hiv-youths-infected-aids-young-people_n_2198629.html">unaware that they have the virus</a>, according to a Centers for Disease Control and Prevention report. "Given everything we know about HIV and how to prevent it in 30 years of fighting the disease, it's just unacceptable that young people are <a href="http://www.huffingtonpost.com/2012/11/27/hiv-youths-infected-aids-young-people_n_2198629.html">becoming infected at such high rates</a>," Reuters reported CDC Director Dr. Thomas Frieden saying. The report also showed that for young people, 72 percent of the new HIV infections were in men who have sex with men, while almost 50 percent were in young, African-American males, Reuters reported. These figures are based on 2010 data.

  • 5. More People Are Living With HIV Than 10 Years Ago

    The number of people <a href="http://www.huffingtonpost.com/2012/07/18/hiv-aids-numbers-statistics-worldwide_n_1682936.html">living with HIV</a> has increased by 18 percent from 2001 to 2011, according to a report released this year from the United Nations Programme on AIDS. An estimated 34.2 million people around the world are living with HIV. The report also showed that <a href="http://www.huffingtonpost.com/2012/07/18/hiv-aids-numbers-statistics-worldwide_n_1682936.html">deaths from AIDS </a>have <em>dropped</em>, from 2.3 million in 2005-2006 to 1.7 million in 2011, Reuters reported.

  • 6. The Cost Of HIV Drugs Is Decreasing

    According to the same United Nations report, costs for the cheapest UN-recommended <a href="http://www.huffingtonpost.com/2012/07/18/hiv-aids-numbers-statistics-worldwide_n_1682936.html">antiretroviral therapy drugs</a> have also decreased over the past 10 years, Reuters reported. A year's worth of the drugs used to cost $10,000 in 2000 for one person; now, it costs $100 a year.

  • 7. HIV Treatment Truvada Can Also Be Used As A Preventive Measure

    The Food and Drug Administration this year officially approved the <a href="http://www.huffingtonpost.com/2012/08/09/truvada-heterosexuals-aids-hiv-prevention-pill_n_1760542.html">drug Truvada</a> -- which has been used since 2004 as a treatment for HIV -- to be sold as a preventive measure for people who don't have the infection, but are at high risk for it. The FDA said that the pill should be considered for <a href="http://www.huffingtonpost.com/2012/08/09/truvada-heterosexuals-aids-hiv-prevention-pill_n_1760542.html">preventive use</a> not only by gay or bisexual men who are at high risk for HIV, but also heterosexual men and women who may also face HIV risks, the Associated Press reported. <a href="http://www.huffingtonpost.com/2012/08/09/truvada-heterosexuals-aids-hiv-prevention-pill_n_1760542.html">Heterosexual men and women</a> make up more than one-fourth of new cases of HIV, and "that's not a portion of the epidemic we want to ignore," the CDC's Dr. Dawn Smith, who was the lead author of the new recommendations, told the Associated Press. The FDA also approved a new drug this year, <a href="http://www.huffingtonpost.com/2012/08/27/stribild-hiv-treatment-fda_n_1834734.html">Stribild</a>, to treat HIV, Reuters reported.

  • 8. Engineered Stem Cells Could Play A Part In Fighting HIV

    In findings published this year in the journal <em>PLoS Pathogens</em>, scientists from the University of California, Los Angeles found that it's possible to <a href="http://www.huffingtonpost.com/2012/04/16/stem-cell-aids-hiv-study-ucla_n_1428660.html">genetically engineer stem cells</a> to attack living HIV-infected cells in mice. While the study was only for "proof-of-principle," it "lays the groundwork for the potential use of this type of an approach in combating HIV infection in infected individuals, in hopes of eradicating the virus from the body," study researcher Dr. Scott G. Kitchen, an assistant professor of medicine at UCLA, said in a statement.

  • 9. Pretty Much Everyone Should Be Screened For HIV

    People should be screened for HIV even if they're not at high risk of contracting the infection, according to draft recommendations released just last month by the U.S. Preventive Services Task Force. The recommendations would mean that everyone between the ages of 15 and 65 should be <a href="http://www.huffingtonpost.com/2012/11/19/routine-hiv-screening-us-preventive-services-task-force-uspstf_n_2161090.html">screened for HIV</a>, even if they're not at high risk for it, Reuters reported. "The prior recommendations were for screening high-risk adults and adolescents," Dr. Douglas Owens, a member of the USPSTF task force and a Stanford University medical professor, told Reuters. "The current recommendation is for <a href="http://www.huffingtonpost.com/2012/11/19/routine-hiv-screening-us-preventive-services-task-force-uspstf_n_2161090.html">screening everyone</a>, regardless of their risk."

  • 10. People Should Be Treated With Antiretrovirals As Soon As They're Diagnosed WIth HIV

    <em>All</em> HIV patients should be <a href="http://healthland.time.com/2012/07/23/new-advice-calls-for-putting-all-hiv-patients-on-drug-treatment/">treated immediately with antiretrovirals</a>, according to new guidelines issued this year from a panel of the International Antiviral Society-USA, as reported by <em>TIME</em>. The recommendations are counter to previous guidelines, which said that antiretrovirals should only be used if the CD4 count -- a measure of immune cells in a person's body -- becomes less than 350 cells for every mm3 of blood.

  • Growing Up with HIV

    During the AIDS 2012 conference, Christina Rodriguez talks about growing up with HIV.




 
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I am a woman living with HIV, but I am a woman first. As a woman, I have similar hopes, dreams and desires as women who are not HIV positive, including having a family. Twenty years ago when I was fi...
I am a woman living with HIV, but I am a woman first. As a woman, I have similar hopes, dreams and desires as women who are not HIV positive, including having a family. Twenty years ago when I was fi...
 
 
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01:14 PM on 12/07/2012
Educating others is an uphill climb because life is much easier for them if they don't have to learn or think for themselves. And with AIDS / HIV being shadowed by such a mountain of myth, fear driven first impressions and dogmatic attitudes, anyone trying to present a different perspective to people with an entrenched thought pattern has a tough row to hoe.

The best I can offer is encouragement to continue to battle the head winds of ignorance and prejudice by arming yourself with up-to-date scientific information and ensuring that you present it as you wish yourself to be seen - in a balanced, non-judgmental, well informed manner.
12:22 PM on 12/07/2012
I've been bitching at Huffington Post to have articles by people who are positive, and not have them be relegated to talking about themselves living with. As people can see with Shari, we are a whole lot more than that with all kinds of expertise. Finally I don't feel like I'm being talked about as if I'm not in the room. Shame they couldn't have been more together for WAD to have more of this. I don't care if it is me or somebody else. Thanks Shari (we know either other). Bri.
12:44 PM on 12/07/2012
Thanks Brian...and thanks to Nicci Stein at ICAD for organizing this World AIDS Day Blog series with the Huffington Post. It is encouraging to be supported in this way by Huffington Post. Thank you!
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10:30 AM on 12/07/2012
Wow, I can't believe how uneducated and ignorant some people are. It's easy to judge others when you're hiding behind a computer and have no clue what you're talking about. What's frustrating is how misinformed society is. Educate yourselves, people. Stop making irrational and idiotic comments without knowing the facts... Maybe if you had some background info to back up your comments, I could take you seriously but you don't. You're opinions are based on fear and ignorance.

Thank you for writing an informative and honest article, Shari. There are people in this world who are educated on the subject of HIV/AIDS who support people living with this disease. All the best to you!
11:14 AM on 12/07/2012
Thank you!
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09:07 AM on 12/07/2012
Healthcare providers respect the confidentiality of patient information or risk losing their jobs. The use of personal protective equipment such as gloves, masks, isolation gowns is dictated by Occupational Health & Safety. These measures are to protect healthcare workers from illness & to prevent the transmission to others. They are justified and do not infringe upon your human rights - they are to protect all healthcare workers and all patients.
10:34 AM on 12/07/2012
Thank you for your comment. I would agree with you, if this were an ideal world. However,health professionals are people too and they have their own biases and prejudices just like everyone else. Unfortunately some healthcare providers take extreme, unwarranted protection measures which go well above and beyond the universal precautions you have correctly described and are highly stigmatizing. There are many documented cases of discrimination , including breeches of confidentiality, against people living with HIV in healthcare settings. I hope that this conversation will encourage policy makers in such settings to review their policies and most importantly, monitor and implement existing policies so that the ideal that you have proposed could indeed become a reality.
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12:15 PM on 12/07/2012
Healthcare workers have a duty to provide safe care. While doing so they also have the right to protect themselves and others from communicable diseases with the use of personal protective equipment. You speak of an instance where you reveal you HIV status. Healthcare workers have years of experience where patients have not revealed, have denied or hidden their status, or refused testing of HIV status. These patients have not aided your agenda. They have endangered healthcare workers & other patients.
08:26 AM on 12/07/2012
Thank you for your comments. You are right, it is about me...and other women like me. Medical advances can reduce the risk of transmission to zero in most cases, . Most of us have a life expectancy equal to the general public so why shouldn't we have families like everyone else.. Research shows that in all cases, not just HIV, taking care of the mother is the best way to care for the child. The biggest risk to our children is the stigma they face from people who don't want to take the time to get the facts such as the the armchair experts that McGuilty refers to.
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wellreadandresearched
Other than frustrated, I don't know what I am
08:19 AM on 12/07/2012
Too many people are ignorant of the issues surrounding HIV/AIDS that they still think they can get it from a mosquito bite, or drinking from the same cup etc...

My oldest brother died of AIDS in 1993. I sympathize and empathize with your situation. If it is medically possible to give birth to a child, without transferring the disease, then I say go for it. I support you unconditionally.
10:38 AM on 12/07/2012
Thank you :)
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04:48 AM on 12/07/2012
That's the problem with armchair experts in comment sections. They think that after reading an article or just having an opinion, one suddenly knows between right and wrong for every issue.
01:52 AM on 12/07/2012
I guess you come first and your children come second.
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Center of the storm
12:09 AM on 12/07/2012
Should be honest and add 'me me me me me' to the title, the content demands more 'me's.
12:24 PM on 12/07/2012
What the hell does that mean? How many people are sharing their knowledge and experience from a 1st person perspective.
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All Seeing Guy
Center of the storm
02:51 PM on 12/07/2012
Sharing knowledge is one thing, sharing selfish ambitions is quite another. But hey, who cares what the poor kid has to live with as long as momma gets what she wants.