Behind the Miracle Cure a Broken System Lurks

| March 5, 2013 | 5 Comments
Share

JimBehind
By Jim Merrell, HIV PJA

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 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 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.

Tags:

Category: National HIV/AIDS Policy

Enjoy this post and the work of our network? Donate $5 to help support our work and capacity to confront the injustice of the HIV/AIDS epidemic in the United States.
  • Waheedah Shabazz-El

    Thank you for connecting the dots on this one Jim.
    I sat here thinking, why would this be happening in this country when we boast that we have conquered MTC and that less than 1.5% of babies here do not sero-convert. Then I thought about my own grand baby, born of an HIV Positive mother, who did receive pre and post natal care. I remember each family member taking part in making sure my grand baby was receiving his medications on time. I remember how we waited for the results of his bloodwork and our own Miracle of knowing that he had in fact cleared the virus (HIV).
    I agree with you when you ask: why in this country of “plenty” did the little girl, her mother and their familiy had to experience the agony of systemic neglect before proper medical and supportive measures were put into place.
    With the proper response to HIV prevention justice, miracles like this can happen everyday.
    Waheedah

    • Waheedah

      Oops in the 4th line I meant to say that:
      ” 1.5% of babies do in fact sero-convert, here in the US.

  • Teresa Sullivan

    Thanks Jim for pointing out the fact that there was a break down in healthcare for the mother and newborn baby, and why are they states that this is the second human being cure of the virus, untrue, matter of fact I personal know of sweet little boy that clear the virus after eight months of being given HARRT meds ( Waheedah’s grand son) . maybe this is the only documented case of a child clearing the HIV virus and that was given a heavy amount of ARVs after 30 hours of birth.

  • Anna Forbes

    Yup! I couldn’t agree more. This may be a bit of a side point (although I don’t think it is). The U.S. Women and PrEP Working Group has spent the six months developing a position statement on what needs to happen in the U.S. to enable PrEP roll out to really benefit the women who need it most in our country. We all know that the very preliminary plans in place now (and being implemented by Gilead) for PrEP introduction cannot even come close to making PrEP a well-known and well-understood option for women who might want to use it. Most people don’t even know that PrEP exists. We released the position statement to the press on Monday and have asked federal officials to meet with us to start development of a well-considered plan, designed and implemented in collaboration with the relevant populations, to REALLY expand access to this new HIV prevention tool so people can make knowledgeable decisions about whether to use it or not. It’s a blueprint for fixing what’s broken in this specific area. Hope you will read it here! http://sisterlove.org/wp-contents/uploads/uploads/2013/03/working-group-on-us-women-and-prep-statement.pdf. Or the summary at http://sisterlove.org/wp-contents/uploads/uploads/2013/03/us-women-and-prep-working-group-key-points.pdf. Thanks.

  • Jeff

    Are we absolutely sure this is a failure of the health care system? Is it also possible that the mother, for whatever reasons, chose not to access available prenatal care?

    As to loss to follow-up, many studies have found that even the most herculean efforts often end up in patients being lost to follow-up.

    Of course, our health care system is broken. But we must also consider the possibility that this woman chose not to access health care both before and after her pregnancy. Until more detailed interviews/information are available, we won’t know.