Cross-posted with permission from the HIV Prevention Justice Alliance (HIV PJA).
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’s been much talk this week about the so-called 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 marks 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 forced to confront the reality of living a lifetime with an incurable infection—one that could have been prevented. Whatever life circumstances prevented her from accessing pre-natal care likely remain unaddressed. And then, 18 months after the birth, mother and baby are disconnected from care for a period of six months. Sadly, if the story ended there, 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 Centers for Disease Control and Prevention (CDC) reports that about 370,000 children are born with HIV each year globally, about 200 of them here in the United States.
Of course, this particular story has quite a silver lining. Defying all previous scientific knowledge, and after a six-month gap in care, the toddler appears to have seen 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, they were “lost to care” for over six months?
Why are we not asking these questions?
The reality is that 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 over the breakthrough that stemmed from 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.
The little girl blessed with a miracle need not be left at 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 the HIV Prevention Justice Alliance as we speak truth to power, putting pen to paper and bringing our bodies to the streets to write the story of a more just future for us all.