March 7, 2014
Another Miracle Baby, a Still-Broken System
by Suraj Madoori
An HIV Prevention Justice Alliance coordinator on the injustice behind a second baby functionally cured of HIV.
During the 2013 Conference of Retroviruses & Opportunistic Infections (CROI), HIV PJA’s Jim Merrell wrote a powerful op-ed that galvanized nationwide discussion surrounding the news of the Mississippi “Miracle Baby” that broke at the conference.
Although the child was born with HIV infection, very rapid and ongoing treatment with HIV drugs made the virus undetectable. Then she and her mother were out of care and off treatment for an extended period. When they came back into care, there was no signs of ongoing HIV infection in the baby – which looked like a first-ever cure of a perinatally-infected child.
While lauding the finding, Jim’s analysis in "Behind the Miracle Cure a Broken System Lurks" looked underneath the news, pointing to the lapses in the health system that made this “natural experiment” with interrupted therapy possible – and that continue to complicate HIV care and prevention.
Since 1994, we’ve known that treatment with anti-HIV drugs – even one as relatively weak as AZT – can drastically decrease rates of newborn HIV infection. And in the mid-'90s, we saw quick action around the country to connect the dots to integrate testing and treatment as a part of perinatal care, and implementation of policies to make treatment accessible to women who present in labor without previous treatment.
Nonetheless, around 200 babies a year are born positive. So how do we best act upon the second year of newborn cure news?
The measures we need to put in place to protect babies from infection are the same ones that will also help the women who carry them in their bodies, and the communities in which they live.
We’re delighted to report that, a year later, the “Miracle Child” remained HIV-free as she approached her second birthday. And this year’s CROI brings news of an additional baby in Long Beach, California who may also have been cured following aggressive antiretroviral therapy within the first 4 hours of birth (although the child remains on anti-HIV drugs at this time.)
But the background questions remain. Today, we are wondering how the first miracle baby’s mom is faring in Mississippi, which still has failed to expand Medicaid to its residents – denying health benefits to some 137,800 people, many of them in deeply rural and impoverished areas.
We also learned at CROI that the mother of the second child suffered both from advanced AIDS and mental illness.
People with mental illness are four times more likely to be living with HIV. The American Psychological Association (APA) recommends integrated HIV care for people with mental illness, in that there is a “need to treat the whole person, not simply parts of the person or their individual illnesses.” Many people living with HIV also come with a history of a trauma, which further calls for a system that utilizes trauma-informed care practices to enhance better engagement in health care.
To put treatment within reach to all pregnant women and newborns, we need to fix our broken healthcare system, and we need reproductive justice. For example:
- We need Medicaid expansion in all states, and quality, accessible HIV testing and healthcare for all people (including the undocumented immigrants who are denied many of the promises of Obamacare).
- We need comprehensive mental health services and trauma-informed care for women and all other people living with HIV.
- We need policies and programs to allow women to access perinatal and health services that respect their human rights and that support them as parents, rather than using or threatening punitive measures, and
- We need to scale up comprehensive and combination HIV prevention strategies so women can protect themselves from HIV before, during and after pregnancy.
We hope for continued good news about these kids at next year’s conference, and beyond. But we also commit to fighting for the policies, programs and funding that will help keep their families and communities healthy, and ultimately end the epidemic.
Suraj Madoori is a coordinator of the HIV Prevention Justice Alliance (HIV PJA) at the AIDS Foundation of Chicago. This article was originally published by HIV PJA.
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comments 1 - 2 (of 2 total)
shine, bridgeport, 2014-06-16 01:57:33
While I agree for the most part, I disagree with the way this news post is trying to connect HIV with poor or mentally ill. That is a huge misconception and storys like that are the reason why HIV is considered a poormans disease. People of ALL lifestyles have it. Rich and poor. Most people get depressed AFTER they're diagnosed. Not before. Stop spreading dis-information. It doesn't help!
MAT STRAZZ, BOSTON ,MA, USA, 2014-03-13 15:59:48
comments 1 - 2 (of 2 total)
I totally agree. except that the mentally ill are 4 times more likely to have HIV. People with HIV end up with mental health problems. so it is the chicken and egg problem.
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