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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comments 1 - 9 (of 9 total)
Colin, Toronto, 2013-03-13 14:53:27
You make very good points in the article about the need to help people.
On a side note, my girlfriend and I (both poz and undetectable) recently had a healthy baby in Toronto, Canada.
Upon birth, the baby was given AZT for 6 weeks and is now clear of any potential problems.
I share this story because I was uptight about giving AZT to my newborn. All I knew was AZT killed many people in the 80s.
The dose they use now is much lower than in the 80s and is deemed safe. I am very grateful.
M.P. Flett, , 2013-03-13 14:30:06
What does functionally cured mean? Was she treated with medication? Does she still test positive?
Greg H, Davenport, FL, 2013-03-12 15:17:53
Michael from L.A., Although Florida may not be "ideal" by some people's standards, at least I'm glad to be out of Los Angeles, the land of pretension and "image." Not to mention the land of pollution, over-population, and an obscene cost of living.
Robert, Atlanta, 2013-03-12 15:02:37
And it comes as no suprise that some LA transplant is unwilling to recognize ANY personal responsibilty on the part of themselves or this mother. Your comment stating, "it's the responsibilty of the state to care for its people" is so shallow and made without any substantive thought. That's exactly why your adopted state is in such financial dire straights. Thankfully, for mother and baby, the state of MS did EXACTLY what it was supposed to do once this mother CHOSE to obtain their assistance.
Michael, Los Angeles, 2013-03-12 11:42:12
I love how all the southerners who have commented on this post just like to talk about "personal responsibility" but didn't bother to read the article where the author basically made the case that its the responsibility of the state to care for its people. Thanks for showing the world your backwards ways, southerners! I'm very happy I escaped from the South! The medical system is a joke. Especially in Mississippi!
Robert, Atlanta, 2013-03-12 10:56:04
Jim, you're so quick to find blame with everyone else without once acknowleging the mother's role for her situation. But that would'nt be PC. Does that mean "we" lose compassion for her? No! But does it mean everyone else should be blamed or shamed for HER lack of reasonable decision making? NO! The failures here are with mother having unprotected sex, not getting any HIV tesing, opting out of any pre-natal care, and not following up with the wealth of FREE services that EVERY state provides.
Greg H, Davenport, FL, 2013-03-12 10:08:10
This article deals with two subjects. One is the supposed "cure" of a child with HIV, and only time will tell on that issue. The other is for-profit "healthcare," which should be a disgrace in such an alleged progressive and wealthy country. Our healthcare system is broken as are so many of our systems, but still we cry, "We're number one!" "We're number one!" We should be embarrassed.
Eric, Brussels (Belgium), 2013-03-11 17:30:23
Good to know! At first i was thinking that the mother was not intersted to received medical care.
It' an other story!! life is seems to be less important than money! Medical aid care ? no because the rich people don't want to help the poor one! . Wat a pity!! It's hopeless i think. Faithfully yours Eric
Chris, Memphis, TN, 2013-03-10 22:09:05
comments 1 - 9 (of 9 total)
And exactly how is this a "failure of the system"? Quite possibly a failure of the education system, but the rest of your comments are fairly unfounded. I'm referring to the questions that you asked. To begin with, Mississippi is one of the poorest states in the U.S. The seemingly unending cycle of poverty and lack of education, go hand-in-hand. It's not the flaw of the healthcare system when people aren't smart enough to seek care and don't follow-up...it's the flaw of the individual.
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