HIV, Poverty and Access

By now you’ve probably all heard about the baby who was born with HIV in rural Mississippi, and now, at 2 1/2 years old, is HIV-free. The child was given an aggressive round of retrovirals upon birth — s/he was born prematurely to a mother who was HIV-positive but didn’t know it. The child was supposed to continue treatment, but the mother stopped coming to appointments, and the baby didn’t receive treatment for a year. Now, in a miraculous turn, the baby is HIV-free.

It’s worth noting that very few babies are born HIV-positive in the United States. Early interventions are excellent at preventing mother-to-baby HIV transmission, and most women are able to get those interventions, thanks to state and federal health programs. That isn’t the case for many developing and low-income countries. I went to Cameroon about a year and a half ago to cover this very issue, and the work that a group called UNITAID is doing to help prevent mother-to-baby HIV transmission. In places with limited financial resources, widespread poverty and lack of infrastructure, getting medication consistently to health centers is tough (and doesn’t happen), and getting people who need ongoing care to the health centers when the medicine is there is even harder. I met women who traveled many miles and for many hours, hitch-hiking and on foot and at great physical and economic cost, to get the retrovirals they need for themselves and to prevent transmission to their children — and half the time, when they showed up at the clinics, there was no medication available. Lack of access to meds, and lack of infrastructure to get women to the clinics and to consistently supply women with the medications they need, are the primary reasons why babies are still born with HIV.

The situation in the United States is significantly better, but this case clearly demonstrates that we’re far from where we need to be. I don’t think it’s a coincidence that this happened in a rural area, where getting to a health care clinic may be a challenge. It also strikes me that the baby and mom were known to be HIV-positive and didn’t get medical care for an extended period of time — and as far as I can tell from news reports, there was little to no follow-up to ensure that the baby and mother were able to get to the clinic and were compliant with the necessary treatments.

It worked out well for the baby in this case (although no word on the mother’s condition), but it’s worth asking: What resources are there for women in rural areas to get the care they need? For all the right-wing efforts to defund Planned Parenthood and for all the money and energy they’re putting into pro-life activism like picketing clinics, passing legislation to constrain abortion rights and backing far-right politicians in local elections, what’s being done by the forces who supposedly love babies to make sure that babies get care? What’s being done on a structural level to make sure that low-income people who may not have consistent access to a car are able to get to health clinics, and that the individuals working in those health clinics will understand their needs and work with social services to meet them?

On a news broadcast about this yesterday, I heard one health reporter say that the mom in this case is “not the most responsible mother.” And maybe that’s true — not getting your HIV-positive infant the care she needs definitely goes in the “irresponsible” column. But I suspect that the mom in this case wasn’t just getting her nails done and going to yoga and forgot to take her kid to the doctor for months at a time. I suspect that some combination of factors got in the way. I suspect they’re the factors that often get in the way of people receiving the health care they need: Poverty, addiction, mental health issues, physical health issues, disability, rural living, lack of access to public transportation, lack of insurance, bureaucratic barriers to health care, providers who don’t understand the complexities of the situation, unemployment, underemployment, the demands of multiple jobs, the demands of caring for children and family.

There are parents out there who are simply irresponsible, abusive and awful. But more often, there are parents who are trying to do right by their kids but who hit walls at every turn. I don’t want to speculate too much on this particular situation because we just don’t know the details (and for the privacy of the family, I hope we stay in the dark). But this would be a good time to talk about how poverty, class, and infrastructure determine very real health outcomes.


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About Jill

Jill began blogging for Feministe in 2005. She has since written as a weekly columnist for the Guardian newspaper and in April 2014 she was appointed as senior political writer for Cosmopolitan magazine.
This entry was posted in Health, Medicine, Politics, Poverty and tagged . Bookmark the permalink.

25 Responses to HIV, Poverty and Access

  1. Very good article, couldn’t agree more, this is not a miracle that the media is portraying though, but something science has been working hard for many years to achieve. This is a complex issue which needs to be discussed and addressed fully, the issues involved are incredibly important.

    • EG says:

      this is not a miracle that the media is portraying though, but something science has been working hard for many years to achieve.

      I guess I don’t see these things as mutually exclusive, perhaps due to my atheism; more, I see them as necessarily one and the same thing. It is a testament to the power of the human intellect and the dedication and work of many scientists and doctors that something wonderful that in my lifetime was thought to be impossible has been achieved. As far as I’m concerned, that’s the very definition of a miracle.

      • SophiaBlue says:

        I agree, but I don’t think that’s what most people mean by miracle, and I think the point is that calling it a miracle makes it sound like God waved the HIV away, rather than this being the result of hard work by human beings.

      • SamBarge says:

        That might be your definition of a miracle but the dictionary’s definition usually includes something about an act going against nature, with supernatural intervention as it’s cause.

        It is helpful to remember that every advancement of humanity, just like every setback, was the natural work of humans. As an atheist, I try to avoid language with mythical and/or magical connotations. It was the talent, commitment, hard-work and goodness of the scientists that brought this about, not some unnatural process of which they weren’t aware or in control.

        Humanity owns this. We own prejudice, evil and poverty too, in case anyone is worried about humanity getting a swelled head.

        • EG says:

          I try to avoid language with mythical and/or magical connotations.

          I strongly disagree. Mythical and magical language is immensely powerful and resonant. Why would I want to give up such an important element of communication and art? That is precisely the sort of thing that religious people think atheists have to do.

          By the way, look at the second definition of Merriam Webster: “an extremely outstanding or unusual event, thing, or accomplishment.” Then look at the examples.

  2. In particular I think it is important as you mention to make a point about the woman in question, when we call her irresponsible we are assuming that there was something she should have done, resources she would have access to, we don’t know her circumstances and I think we need to be sensitive, but there are most likely I host of other factors involved e.g. unemployment and addictions. Get thought provoking post (btw sorry if I’ve double posted my comment by accident).

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  4. Aunt B. says:

    I’m not sure if I’m just not reading the NYTimes story the same way as everyone else but it seems obvious to me why the woman stopped coming to the doctors. Her follow-up appointments appear to also have been in Jackson, where they took the baby when they discovered it was HIV positive in the first place.

    In many ways, this makes sense–obviously, a major university medical center is going to have more experience with HIV patients and their care and it’s probably a lot easier (and less stigmatizing) to fill HIV prescriptions in Jackson than in rural Mississippi. But my god, if a woman doesn’t have the resources to get to a nearby doctor when she’s pregnant, even getting to Jackson as much as she did shows a monumental commitment to caring for her child. I cannot imagine how hard it must have been for her to decide she could no longer make the trip.

    I mean, if she’d not gone at all for follow-up appointments, you could argue that she was uncaring. But for 18 months, she got to Jackson.

    As for Jill’s question about what resources there are for rural women, obviously, very few. There’s a great program here in the South–the Maternal Infant Health Outreach Worker Program

    http://www.mc.vanderbilt.edu/root/vumc.php?site=MIHOW

    –that trains local women to provide a lot of guidance and mentoring to pregnant women and new mothers. They do really great work. But if you’re in the mood for being depressed about the seemingly insurmountable issues women face, talk to those folks some time. Some of it is structural–in rural Appalachia, for instance, some pastors don’t take kindly to anyone telling the women in their congregations that they don’t have to accept being beaten. Some of it is just practical–if your family has one car and your partner needs to take the car to work, how do you get to the doctor? Or, if you live in the rural Delta and your baby needs to regularly see a specialist in Jackson, how do you get there?

  5. chana says:

    Am I the only person who doesn’t see anything in the NYT article about the socioeconomic status of the mother? Are we over-relying on stereotypes to fill in the blanks that this woman, by virtue of being HIV+ and from rural MS, has large obstacles getting to appointments, including poverty and addiction?

    • Jill says:

      I tried to be careful in the post not to assume that she’s anything in particular. But given that the poverty rate in rural Mississippi is 25% I think it’s fair to consider it as a very possible factor. Or, like I said in the post, the mother might just be an irresponsible jerk who doesn’t care if her child gets treatment for HIV. But I suspect something else (or many something elses) is going on.

    • karak says:

      I don’t see anything particularly progressive about assuming a mother is a terrible, disgusting person for not raising her kid the way others want to. That seems to be the standard.

      • chana says:

        I don’t think one should anything about the SES of the mother because the article had absolutely no information that points one way or the other.

        Assuming that just because someone has HIV and misses doctor’s appointments, she’s probably impoverished and/or drug-addicted isn’t very progressive either.

        • chana says:

          Ugh. Missing word fail. “should *assume* anything”

        • Assuming that just because someone has HIV and misses doctor’s appointments, she’s probably impoverished and/or drug-addicted isn’t very progressive either.

          WTF.

          I would assume that something horrible happened to the mother for her to not be able to get the kid to treatment, personally, mostly because she DID make it to the hospital so many months under, presumably, roughly similar circumstances. (Though of course unemployment could have struck, and my immediate thought was that she got very sick herself and wasn’t able to travel, that’s a possibility too, etc.) But, you know, feel free to be all anti-stereotypes and just assume she’s perfectly able to get the kid treatment and just stopped because after 18 months of that tiresome hospital visits a girl just has to do her nails for five months, or something.

        • SophiaBlue says:

          I’m pretty sure you’re the first person who brought up the possibility of drug addiction.

        • igglanova says:

          I think you’re being unfair to chana. The point of his / her comment was not that we should assume the worst of the mother, but that we should avoid making assumptions of any kind.

        • chana says:

          Thank you, igglanova. This is a real woman, who will presumably be reading or hearing about herself everywhere. To have people imagining parts her life so they can be used to fit into their narratives must be awful. I’d just want me and my supposed problems kept out of it.

        • EG says:

          That’s not really possible. The baby represents a huge medical breakthrough; it’s a legitimate major news story, and when a baby is involved, you can’t really keep the mother out of it.

        • karak says:

          If you’re missing your HIV appointments for your newborn baby, you’re either seriously financially/mentally incapacitated or a foul, disgusting human being (or possibly both).

          There’s really no other explanation. We can either give the mother the benefit of the doubt and think there may be other factors, or we can assume she’s shitty person who should be drowned at sea. I’d rather be merciful, but to each their own.

        • Alexandra says:

          Or simply ignorant, karak. Sex education in Mississippi in the Bush years was practically non-existent. There are still plenty of people who think that HIV is:

          – a “gay disease” and punishment for the sin of homosexuality

          – a CIA plot

          – a Tuskeegee style experiment

          Not to mention how powerful denial can be. And perhaps this mother saw that her baby seemed perfectly happy and healthy, and couldn’t see the use of the ARVs – how many people go off antibiotics every year, despite knowing the risks?

          Another interesting fact: over the course of one year, around 60% of all people with a chronic health condition will be not adhere to their medication regime for one reason or another. This holds true across many different types of ailment, from heart disease to bipolar disorder. I see no reason why HIV/AIDS would be any different.

      • Lolagirl says:

        Wait a minute, the parent and child live in rural Mississippi, yet we are not supposed to acknowledge the widespread reality of poverty and how it results in much of that population being medically underserved? And somehow working from the assumption that this reality likely played a role in this child not getting needed medical care is not a progressive thing to do?

        Or maybe, it just makes it easier to Mommy bash. It is a national pasttime, after all!

    • rhian says:

      In my experience, when people stop seeking health care, particularly for their children, and particularly for a very serious issue, it’s almost always for one of the reasons Jill mentioned.

      • Jill says:

        Right. Look, I don’t want to make assumptions about this particular mother. I do want to use this case to open up a conversation about barriers to health care — because world-wide, barriers to health care (including poverty and infrastructure) are the primary reason why there are any babies born with HIV. Mother-to-baby HIV is very, very preventable. It just takes access to the necessary health care and medicine. We should be discussing that, and what those barrier are in the U.S. and particularly abroad.

  6. Alexandra says:

    I am beginning to get involved in volunteer and outreach work in a community (it really is a community – strong bonds in the neighborhood) of primarily homeless and drug-addicted people who have been ghetto-ized by the town into a historically red-lined neighborhood still known as Chinatown from the time when it was the only place Chinese immigrants were allowed to live.

    Specifically, I’m going to be doing work through an HIV/AIDS Services group, in the needle exchange (I mentioned this group during the Open Thread discussion). One of the things we did during orientation/training was a needs assessment, and during conversation with a community rep from the homeless population, it came up again and again how immobile the homeless really are — people are not able to walk even a mile and a half to the nearby community hospital; many must wait for an hour-a-week clinic hosted out of the soup kitchen. A combination of physical disability, drug addition, mental illness, age, social stigma, and ignorance (not all at once, necessarily) serve to limit the movements of many people in this neighborhood. If you’re homeless and use a walker, and there’s little public transportation, you cannot walk a mile and a half, especially if you’re diabetic and have lost feeling in your toes, or if you have an abscess from using a blunt and dirty needle to shoot up…

    I don’t know much about the concrete issues of access to healthcare in rural Mississipi, and I think Chava’s point upthread about not making assumptions about the identity of the mother of this miracle child are well taken. Still, I think it is broadly true that there can be a whole lot of barriers other than laziness or poor moral character to getting medical care for a sick child.

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