March 7, 2013
A Broken System Births a Miracle Child
by Jim Merrell
An HIV Prevention Justice Alliance coordinator on the injustice behind a baby functionally cured of HIV.
The stories we tell ourselves about the world we live in matter. While we celebrate this week’s story of an HIV miracle cure, let’s not forget the story of injustice that made it possible.
There have been a lot of stories about this week’s “Mississippi Miracle” – the apparent functional cure of a two-year-old girl who was born with HIV.
But I’d like to tell you another story. One that’s based on the few details that have emerged about the Mississippi case and the hard truths we know about the challenges facing many people living with HIV in the United States.
It’s a story about our health care system: A young mother in Mississippi goes into labor early. Her arrival at the hospital is the first time she has received medical care during her pregnancy.
She has no documented HIV status, prompting hospital staff to test her for the virus.
The test comes back positive. Her baby is born prematurely, also infected with HIV.
In a matter of hours, the life of the young mother has been turned upside down. She is now forced to confront the reality of living a lifetime with an incurable disease, one that could have been prevented. Whatever life circumstances prevented her from accessing pre-natal care are likely left unaddressed. And then, at 18 months after birth, mother and baby are disconnected from care for a period of six months. Sadly, if the story ended here, it would be unremarkable. Despite over a decade of knowledge on the prevention of mother-to-child-transmission of HIV and the amazing success of public health programming that put this knowledge into practice, the CDC reports that about 300,000 children are still born with HIV each year globally and about 200 here in the United States.
Of course, this particular story has quite a silver lining. Defying all previous scientific knowledge and after a 6 month gap in care, the toddler appears to have achieved a “functional cure” of her HIV infection.
Media attention has understandably focused on this historic observation and its potential implications for HIV cure research and mother-to-child-transmission.
But lurking behind this feel-good narrative are several heart wrenching questions:
Why in the richest country in the world is it possible for a pregnant woman to receive no prenatal care whatsoever?
Why is it that our medical care system did not detect the HIV status of this young woman until she was about to delivery her baby?
Why is it that even after the mother and child were diagnosed with HIV that they were “lost to care” for over 6 months?
Why are we not asking these questions?
The fact of the matter is this “natural experiment” was brought about by a failure of our health care system to protect the most vulnerable (and often most invisible) members of our communities. It should never have happened.
Our excitement and thrill over the breakthrough made by this accident of injustice should be matched by an equal sense of shame that we continue to allow our fellow human beings to slip through the cracks of a broken health care system.
However, the little girl blessed with a miracle need not be left to the mercy of the same social safety net that clearly failed her mother. This is a story we can still change. I hope you will stand with HIV Prevention Justice Alliance as we speak truth to power, putting pen to paper and bringing our bodies to streets, to write the story of a more just future for all of us.
Jim Merrell is the national advocacy and mobilization manager at the AIDS Foundation of Chicago. In this role, he co-coordinates the HIV Prevention Justice Alliance. This article was originally published on the Inside Story blog.
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