Monday, November 8, 2010

"HIV Babies" in the United States

There was an article in the New York Times published on Friday about "HIV Babies" in the US who are now reaching adulthood--those babies who contracted HIV from their mothers in the early 1990s. Pediatric infections are rare in the US today because prevention of mother-to-child transmission of HIV (PMTCT, also known as vertical transmission) treatment regimens can drop transmission rates below one percent and because there are health and social systems in place to support pregnant women who are HIV-positive.

Pediatric HIV is especially dangerous. One-third of HIV-positive babies will die before they reach one year of age and almost half will die before reaching age two if they are not diagnosed and treated early. Issues of treatment with, adherence to, resistance to and toxicity of antiretroviral drugs that must be taken for life are also complex (and many of the most efficacious drugs on the market today were not available in the early 1990s). One of the young men profiled in the article is, at age 20, the longest-living person born with HIV in Rhode Island.

There are also four short video segments with interviews from the young people interviewed for the article. The segments are both heartbreaking and hopeful--the stories of teasing and of stigma were especially sad. Before I came to work for m2m, I didn't know a huge amount about HIV and AIDS. I think it's shame, especially in the US, where many people diagnosed with HIV can and do live normal, healthy lives (albeit sometimes with complications, of course) that there is so much ignorance and so much stigma. There have been huge public health interventions to educate people about HIV and AIDS in the US, but a lot of us still don't know enough. With education comes a lessening of stigma, I think.

As a historically-inclined individual, I started reviewing the history of HIV and AIDS. Even though I know this, I am shocked every time that I start reading about what it was like in the earlier days of the epidemic--the public panic, the incredible activism, the horrible government responses, the sheer number of people who were dying. One image stuck with me--that of activists protesting Reagan's HIV/AIDS policies being arrested outside the White House by police clad in long yellow rubber gloves. This was in 1987, when I was one year old. There is, perhaps, more awareness now (and certainly less panic) about HIV/AIDS. The epidemic has changed, and it's no longer a death sentence as long as you can access treatment and support, just as having a child when you're living with HIV no longer presents as high of a risk to the child.

We've made some huge strides forward in the fight against HIV/AIDS, but there is, as always, so much more to do. Education is a good first step. As is public disclosure, the way that these (brave) young people have done. I'm not advocating that everyone living with HIV should step forward because everyone has the right to privacy. But what our Mentor Mothers do--which is, essentially, public disclosure--and what people like Magic Johnson have done is vital to raising awareness and de-stigmatization of the virus.

So, if you have a chance, go check out one of the articles I've linked to above or do some research on your own. A good place to start is AVERT's website.

Update, November 10, 2010: Hannah has a great perspective on pediatric HIV and the differences in care between the US and developing countries over on her blog. You should check it out.

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