Behind the Miracle Cure a Broken System Lurks
March 5, 2013
Atlanta, Ga. -- 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 U.S.
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 U.S.
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 deliver 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 the 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.
Comment by: T.rex
Thu., Mar. 28, 2013 at 6:05 pm UTC
To me, it sounds like the baby was never infected in the first place. On this very site, the doctors in the forum have claimed that its nearly useless to test a newborn baby, because they carry their mom's antibodies regardless of infection... Then, after a year or so, the antibodies that aren't being used eventually fade away and the baby will test negative.
Sounds like to me, the docs in this case pumped a healthy baby full of toxic drugs, and rather than face a lawsuit, are claiming they cured him.
Comment by: Justicia
Wed., Mar. 13, 2013 at 4:55 am UTC
But why would a pregnant mother not seek pre natal care in this age and time? There may be many more like her and whatever accounts for this glitch need to be addressed asap to stem incidence of mother to child transmission.
Comment by: Bruce E
Mon., Mar. 11, 2013 at 11:49 am UTC
Thank you for speaking to these important, neglected issues. We face them in our clinic regularly. I would comment, though, on your question regarding mother's being lost to care for six months. This isn't necessarily a failure of the medical provider. We have a retention in care program, but there are many barriers to f/u such as phone number changes, loss of cell service, address changes and patients' avoidance because of shame/stigma or a host of life stressors. These are also symptoms of societal problems we need to continue to address, but shouldn't necessarily be laid at the feet of the medical provider.
Comment by: Sue S
Thu., Mar. 7, 2013 at 12:37 pm UTC
Kudos to Jim Merrell for even bringing the tragic reality of our healthcare system into the story. Every point he makes is not just valid, but, in my opinoin, urgent.
However, as a single-payer activist and someone who is living with chronic, uncurable diseases other than HIV, I want to put in a word for the opportunity ALL people with little or no access to healthcare have right now to unite to demand an end to this profit-driven mess we have.
It's time for the HIV community to quit pushing the ACA as if it were universal healthcare (it's not) - yes, there are good things in it, but the insurance industry still has the same power to deny claims, to raise premiums and co-pays, to impose sky-high deductibles, in essence, to do whatever they want to protect not our health, but their profits.
The HIV/AIDS community has had ACT UP and TAG and ATAC - but we who have cancer, liver disease, Alzheimer's, heart disease, diabetes, and any number of other life-limiting conditions haven't figured out how to utilize activism the way HIV-positive people have.
And now we are all about to suffer the end of much of the significant medical research that could make the difference between living sick and being cured.
As my fellow single-payer activist Ken Kenegos said, "You can't opt out of healthcare. You got a body? You're involved." And we all need to be involved together, in numbers, and with fierceness that can't be ignored. I hope that day is coming before we start losing too many more people to any disease.
Comment by: Paul
Thu., Mar. 7, 2013 at 12:19 pm UTC
Why in the richest country in the world is it possible for a pregnant woman to receive no prenatal care whatsoever? why did the mother not seek prenatal care in a country that provides prenatal for many non citizens who know how to use our system
Why is it that our medical care system did not detect the HIV status of this young woman until she was about to deliver her baby? and what point other than when she came to the hospital to deliver the baby did they have the opportunity to test her?
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 is everything the responsibility of the government and not of the parent
Comment by: mike
Thu., Mar. 7, 2013 at 12:18 pm UTC
Totally yes yes yes.
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