Hi everyone. My name is Kortney Ryan Ziegler and I currently blog over at blac(k)ademic. Amp has generously opened up his blog for me to guest post for a few days. I wanted to kick start off my time here with a posting about HIV/AIDS and how it is disproportionately affecting black women. I hope you enjoy.
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Think back to the mid-80’s during the Reagan era when HIV/AIDS surfaced and was linked to gay white men. As hundreds of them began to fall ill and die, a widespread panic ensued, resulting in mobilizing the white gay community in attempts to educate people in protecting themselves. Now fast forward to 2006. The new face of AIDS is no longer the young, white, gay promiscuous male–black women are now becoming, if we aren’t already, the group with the highest incidents of HIV/AIDS in the United States, with the War on Drugs, the prison industrial complex and the conditions of poverty to blame.
Poverty is inextricably linked to the high numbers of HIV/AIDS cases amongst black women, as it has provided fertile ground for our increased vulnerability to infection. A number of women are subjected to living in sub-standard public housing, are receiving sub-standard educations, and are working a number of jobs, but barely make enough to survive. This increased susceptibility to psychological and emotional stress has seen more black women turn to intravenous drugs as a mode of escape from these harsh realities. Therefore, it is becoming increasingly important to realize that a large number of black women are getting HIV/AIDS from intravenous drug use with contaminated needles, and not the mythological “down low” phenomenon the media keeps telling us to believe. Subsequently, the feelings of hopelessness coupled with a low-self esteem also drives some young women to have multiple sex partners without using protection–leading to an exposure of a number of STD’s.
Access to healthcare is key to the prevention of future HIV/AIDS cases in young black women. However, since about one in three black women have no health insurance, there are little opportunities for routine checkups that could identify STD’s or their exposure to the virus itself. Furthermore, without healthcare, black women who are infected with the virus are left to be diagnosed in advanced stages of the disease and if pregnant will inevitably transmit the virus to their children–infecting a new generation of young blacks to repeat this cycle. Even if a black woman has HIV/AIDS and has some form of healthcare, private or public, her economic status will determine rather or not she is able to afford the expensive treatment and medications that are used to manage the virus. This can be an added expense of up to $30,000 a year. Moreover, black women who do have access to healthcare might encounter barriers that prohibit sufficient attention due to institutionalized racism that results in lowered quality care from medical establishments.
In addition to the conditions of poverty, male partners who are products of the prison industrial complex–which is a breeding ground for the virus, are infecting black women with HIV/AIDS. Currently, a large number of our nations jails restrict inmates from having access to condoms and safe sex instruction, which heightens the risk of transmitting the disease to their female partners outside of prison. Furthermore, the violent nature of the prison industrial complex constantly puts the lives of young men at risk through contact with contaminated bodily fluids.
How can we end this destructive epidemic that is systematically killing young black women AND men?
I personally think there needs to be more focus on sex education in the black community aimed at adolescents and adult women. Such education would need to be culturally specific since HIV/AIDS disproportionately affects blacks. This education would need to rely on instructing women how to effectively use condoms and when and how to get tested when they have multiple sex partners. Secondly, discussions about self-esteem and female empowerment must take place within black communities. Instruction in self-empowerment will help black women affected by the conditions of poverty to increase their self-awareness without feeling the need for male capitulation. Third, there needs to be more attention given to the disease aside from the yearly black aids day. Grassroots activists and politicians of all colors need to address the multiple factors that are leading to the infection and spread of HIV/AIDS amongst black women. Many argue that the reason that the number of cases of HIV/AIDS has decreased amongst whites is because of a mass movement that provided education and deterred further stigmatization of the virus and those with the virus. It is long past due for our movement to take shape to combat the general apathy shared by a large number of blacks in fighting and acknowledging that the virus is not just a “gay disease.” Last, I think the media has a powerful potential to create counteractive images of the AIDS epidemic. We are combated with powerful media images daily that subject black women to roles similar to that of worthless prostitutes–these ideas have infiltrated the psyche of young black men and women, and I believe have forced some of us to adopt those roles as truth. We can use the media, such as blogging, to educate as many folks as possible about how the virus is contracted and spread, also to inform people of the services that are available for women who are living with the virus.
The HIV/AIDS epidemic must be at the center of a current black mass movement, similar to how black civil rights were at the forefront of the movements in the 60’s. That same type of grassroots activism that has given blacks, women, and lesbians/gays more mobility to move within America must be replicated in combating this threat to our lives and it is up to all of us–activists, politicians, religious leaders, and intellectuals alike, to be more straightforward about the virus and its effects within our community.
Much attention has been focused on Africa as a dying continent from HIV/AIDS, and that is rightly so. However, black women in the United States deserve the same amount of attention directed towards them and their HIV/AIDS death sentence. This virus disproportionately affects us and is prohibiting our community from experiencing longevity…we have nothing to lose but our lives if we continue to sweep this issue under the rug.
This posting is also posted on my blog.
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Hey, this is great! Both the post, and the fact that you are here!
Thanks for posting this.
I think the alarmingly high rates of HIV in the black community are genocide because they’re an entirely predictable result of prison, poverty and lack of healthcare access. I read a while ago in the New York Times that 49 states don’t allow condoms in prisons because they want to discourage homosexuality. The result of this homophobic, hateful thinking is entirely predictable and therefore can only be assumed to be intentional. Politicians who try to increase incarceration rates, prevent condoms and fight against healthcare are perfectly happy when black folks die.
The United States is the only first world country without universal healthcare. This harms everyone, but especially minority communities. I’d like to see universal healthcare be the biggest domestic issue in the United States. It’s the 21st century. It’s way past time for universal healthcare.
I believe there was a short radio journalism piece about this very topic a few months ago (sorry if I can’t remember the station – I was on travel). Isn’t the fact that many women feel that they cannot insist on condom use a significant part of the problem?
Third, there needs to be more attention given to the disease aside from the yearly black aids day.
I absolutely agree. However, activists need to come to terms with the reality of race. If we could get research specific to the HHC/HHC and HHC/HHD pairs of the CCR5 Haplotype which correlate to maximal disease progression in African Americans then we may come to a deeper understanding of how to treat African Americans infected with HIV/AIDS. See this paper for a treatment of how genetic variation affects HIV/AIDS severity and time to death, as well as infection rates.
The more we understand these issues the more tailored our responses can be. Also, I realize that this type of response is an “after infection” event rather than a preventive measure, nevertheless a greater understanding would lead to improved patient outcomes.
I’m sure that other commenters will be stepping forward to discuss the preventive measures you’re advocating but I didn’t want this aspect of the battle to be inadvertently overlooked, for we should also try to improve the lives of those already infected.
Tango,
You know that there’s more genetic variation within the African continent than outside it, right? So while genetics may be useful in treating the AIDS epidemic, whatever gets made isn’t going to be a race-based “get shot with this if you’re of African descent cure.” Because genetics are real, but race as it is viewed in the Western hemisphere is a construction.
I feel like I should expand on that a little (forgive me for taking two comments).
Exploring your idea of a race-based genetic cure (which I’m not sure is how things would really work out) a little further:
From my understanding of race and genetics, a genetic-based cure such as you describe might work for a few groups of people. To be arbitrary, let’s say it works for those members of the Yoruba who fit a certain genetic profile, and for members of other peoples who are sufficiently related to them. (I’m basing this thought experiment in Africa because of the context of the post.)
Just because this cure works on the Yoruba group, however, doesn’t mean that one should assume that it will necessarily work on the Kikuyu (I have no idea what the genetic relationship is between Yoruba and Kikuyu specifically; if I’m saying something ignorant here, I hope it will be pointed out). The Yoruba are primarily based in Nigeria and Benin, the Kikuyu in Kenya. They are two distinct groups of people, despite the fact that we label both as members of a black African race. For the sake of argument, let’s say that the cure does not work on most Kikuyu.
Take that information and reapply it to the American context, where we have both Yoruba- and Kikuyu-descended people all functioning under the same umbrella of racial terminology as “African Americans.” They may share superficial traits that American culture highlights – such as darker-colored skin, and some facial features. But that doesn’t mean they have a genetic relatedness which is relevant in the context of a vaccine.
So, Tango, when you say “activists need to come to terms with the reality of race” — I hear you saying that “if only activists would admit to tough truths about race, then we could make a lot of medical progress.” But this isn’t necessarily true, since relying on social constructions of race and not medical constructions of genetics leads to bad scientific logic.
Mismeasure of Man by Stephen Gould covers some of the history of scientific error as it pertains to reifying a concept of race. It’s an excellent book.
Excellent post. There’s some local grass-roots activism in my city addressing this issue, including preventive measures and sex education(both the practicals of condoms and empowerment of young women and girls). These localized movements need to be seen on a much larger scale, because there’s obstacles to address that are similar in some regards, far different in others to what Whites including gay men have faced. Like you wrote, this is a national crisis(as well as an international one). It needs to be addressed and prioritized as one.
People with HIV/AIDS initially encountered stigmitization because it was seen as a “gay” disease or one dominated by IV drug users, even though there were many other men, women and children affected. Education was very key in terms of changing these attitudes somewhat, both in terms of “safer sex” and in terms of not stigmitizing those with HIV/AIDs.(in California, there was actually a push through the ballot to quarantine people who were HIV+). Because it impacted various parts of the entertainment industry so greatly, there was a large push from those communities to educate people and push for money spent on medical research and treatments.
I’ve talked to women of color who have addressed the issue of HIV/AIDS in their communities. They’ve explained that it’s a two or more parts process.
With Black women, there’s the stigmitizing affects of HIV/AIDS plus institutionalized racism in among other areas, health care, the criminal justice system/penal system, education, employment, housing and the emotional, physical, financial stresses associated with racism which contribute to the spread of HIV/AIDS. So, in a sense, there’s dealing with the threat of HIV/AIDS in your community, the impact and spread of which is stemming from other forms of racism that are separate from HIV/AIDS but feeding into it. Then, there’s also dealing with the racism that is entrenched in society which makes the spread of HIV/AIDs difficult to stop, based on the examples you provided in your column. How do you address the lack of access to health care many Black women face? How do you deal with the impact that employment discrimination in all its forms has on the Black woman and her family? How do you deal with the impact of the criminal justice system/penal system on the lives of many Black women, particularly poor ones and their families? It’s a serious issue that requires multiple approaches in my opinion.
Mandolin,
You need to distinguish the African variation into coding versus non-coding. From what you wrote it appears that you’re invoking the Lewontin Fallacy. The genetic variation pertinent to HIV/AIDS is found at the CCR5 haplotype and it not scattered randomly about the genome. It’s very easy to isolate. What we’re doing now is we’re trying to develop a generic treatment regime for everyone rather than tailoring treatment to variation found in the CCR5 haplotype pairs. If we developed the latter strategy then the probabalistic game of treatment increases the chance of favored outcomes for the patients who didn’t fit the standard profile. Google up the efficacy of BiDil for more on this line of thinking.
Now, as to your broader question of African genetic variation, well you need to look at more than one locus at a time. If you look at just one locus, you can get bizarre constructs like Jared Diamond’s “lactose intolerant races”, which group people with different genome content together on the basis of their similarity at one locus. As an analogy, suppose you had a bunch of text documents from two categories: mathematical papers and New York Times articles. Suppose that you grouped them on the basis of whether the fifth word was a verb or a noun. That grouping would be incoherent because it was not a global grouping based on document content. It is a fragile grouping that would probably not distinguish well between the math papers and the Times articles.
But if you allowed the use of a global grouping – a grouping on the basis of textual content – you could do a much better job of automatic classification of document type.
Point: you need to look at the whole genome, particularly the correlation structure of the genome. Returning to our text example, this would mean comparing sentences rather than individual words. If you saw a word like “have”, you would not know whether it was from the math paper or the Times article. But if you saw a sentence like “Square matrices without full rank have at least one zero eigenvalue”, you’d know it came from a math paper rather than a Times article.
By looking at the correlation structure of the genome the issues become clearer. Let’s extend the example a bit – If you typed several hundred neutral loci from 20 Japanese and the same loci in 20 Nigerians, a computer could distinguish them with essentially 100% probability. From the scientist’s perspective, the Japanese form a cluster in allele space. Now, when we’re dealing with the CCR5 Haplotype the classification becomes even simpler. We’re not saying that every Black person carries a specific variation, just like we don’t say that every White person carries another. However, if the treatment is biased to a standard model and the probability of a individual Black patient falling within that standard model is lower than the probability of a individual White patient, then the outcomes for Blacks are much worse. The goal here is to make the treatment better and not let perfection be the enemy of good. The genetic variation within the African population is understood but even factoring that variation into the equation the probability of a better outcome for any particular HIV/AIDS patient who is Black is improved by recognizing these issues. That’s the goal. Think of treatment being offered on a continum where one pole offers a standard treatment and the other pole offers treatment specific to an individual’s genetic make-up. The former is very cost effective but there is an efficacy trade-off, while the latter is very cost ineffective but the treatment is very effective. What I’m saying is that the lives of Black HIV/AIDS patients can be improved by moving away from the standard treatment model towards a grouping model.
As for your suggestion of S.J. Gould, well don’t be offended but it’s par for the course that someone waves his book as a talisman against research techniques that weren’t even invented in 1981. Look, even Paul Krugman has come to realize that there’s no there there:
Secondly, discussions about self-esteem and female empowerment must take place within black communities. Instruction in self-empowerment will help black women affected by the conditions of poverty to increase their self-awareness without feeling the need for male capitulation.
What does this mean?
I personally think there needs to be more focus on sex education in the black community aimed at adolescents and adult women. Such education would need to be culturally specific since HIV/AIDS disproportionately affects blacks.
What aspects of culture among blacks affects how sex education should be presented?
This education would need to rely on instructing women how to effectively use condoms and when and how to get tested when they have multiple sex partners.
While there are many benefits from getting tested, it won’t do a damn thing to keep the person being tested from getting AIDS, and that should be the primary focus here. And do you think that suggesting that people not have multiple sex partners (or sex partners that they don’t know very well) should have a place in sex education? Or is that part of the self-esteem and empowerment discussions you’re talking about above?
We can use the media, such as blogging, to educate as many folks as possible about how the virus is contracted and spread, …
I’m all for education, and there’s people becoming newly sexually active every day, but do you think that there’s very many people over the age of 12 who don’t know how AIDS is caused and spread? If there are, that’s sad!
Tango,
I suspect we’re arguing at cross purposes, which is my fault for taking your original post in a way in which it was perhaps not intended. I don’t see the medicalization of race as a good thing – because I don’t see it as a concept which can be reified. If one is looking at genomic instead of superficial traits, though, then of course that is appropriate.
Thank you for pointing me in the direction of more information.
You know what I like even less than the medicalization of race?
Black people dying.
Realizing race matters some biologicically is bad. Black people dying is bad too. How many black people should so you can feel good about thinking race doesn’t matter? 10,000, 1 million? Just give a ballpark so I can compare the strength of your ideology against how much you value human life.
Rob,
Please go look at my post above. If you’d like to have a conversation about why you disagree with it, I’d be happy to do that. If you want to posture about figures in a highly hostile way, please feel free to address your comments to the blankness of the internet.
Thanks!
Until we can do significant genome scanning fairly cheaply, we’ll have to use phenotype as a proxy. For alleles that don’t show up in obvious ways, we need to use correlations. Race is one of those correlates.
It was not a hostile comment. BiDil will save black lives. Some people did not want it approved as the first med that’s limited to one geographic ancestry group (race). They (you, if you felt that way too) would condemn people to earlier deaths to suport their feelings on race.
If you don’t want BiDil prescribed to people it will help because of reification of race, why don’t you accept that that decision would lead to people dying?
Rob, your post #11 was extremely hostile. in tone. If you didn’t intend that, then you need to work harder on controlling the impression you give with your tone.
I don’t think anyone here has objected to BiDil being prescribed. However, the topic of this thread is HIV/AIDS and race, not BiDil; it’s only 14 posts into the topic, so I think it’s too early to change the subject.
So you do think that race is a legit factor in prescribing drugs and public health policy?
Mandolin, do you support BiDil being prescribed?
I have no objection to any medical treatment being applied based on well-established rationales.
What I have an objection to is the suggestion that activists don’t have a realistic construction of race, and that race is more than a social/historical category and a useful construct for some situations, such as when the phenotype is relevant.
Since Amp has requested that the comments be limited to HIV/AIDS, I’m not going to address your question abuot BiDil in any more detail than I already have.
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That said, I wanted to say thanks to Blac(k) academic for including the link about the mythological down low. That’s something I’d bought into.
Um, what do you mean by “mythological”? I followed your link, but this didn’t explain it to me. You just describe other likely causes for the phenomenon, which has nothing to do with the question unless one assumes There Can Be Only One cause.
Mandolin,
What I have an objection to is the suggestion that activists don’t have a realistic construction of race, and that race is more than a social/historical category
If we can stand back and look at this intellectual tug-of-war over defintion with a detached eye we see that the social construction issue was pushed as a reaction to previous over-simplified biologic explanations. We also need to factor in the political undercurrents that were taking place which led to guys like Lewontin writing that “”There is nothing in Marx, Lenin, or Mao that is or can be in contradiction with a particular set of phenomena in the objective world.” The righteousness of the movement came to infect cultural anthropology very severely, and sociology a little less so, and it worked its way into avant garde mainstream thinking. All the while the tools available to the biologic proponents weren’t of sufficient sophistication to mount a convincing rebuttal or people weren’t willing to be convinced with the evidence that could be mustered at the time. However the battle wasn’t won or lost, it’s just that progress for both sides stopped. The social constructionists maxed out with their efforts to convince people because they ran into the “believe me rather than your own lying eyes” dictum and the biologic proponents were just ramping up their new genomic toolsets. However, the battle is once more heating up because of research like the following:
The definitional issue becomes a little more complex when we factor in how lay-people interpret the concept of race. Where the social constructionists are on solid ground is that there are no “pure races” no platonic ideals. Not every Asian person fits into a neat category, just like not every Black person nor every White person. These are indeed social constructions. Where the social constructionists are wrong is their position that there is no meaningful linkage between social identity and genetic composition. Sometimes it’s helpful if people think of race like family. How many families exist in the world? What is the definition of family?There is fertile ground for dispute with those questions, but does the definitional dispute invalidate the concept of family. Clearly it doesn’t. The problem that is made clear in the family analogy is that the term can mean nuclear family, it can include cousins and grandparents, it can include in-laws, etc. The solution to both the family and race definitional battles is to understand exactly what it is that we mean by those defintions. There are no platonic ideals at work here but that doesn’t mean that there is no meaningful linkage between identity and genetics.
Back to the the HIV/AIDS issue -what I’m saying is that we can extend an effort to improve the lives of sufferers by tweaking research. I can point you to loads of posts on my blog that deal with medical conditions that are parsed through the vector of race – things like diabetes, hypertension, Myelodysplastic Syndrome, Aplastic Anemia, breast cancer, Long QT syndrome, in addition to the well known ailments which have a disproportionate impact on people of Jewish descent. Also, issues like Graft versus Host Disease, which has a far lower incidence in the more homogenous population of Japan than in other countries.
Until we can do significant genome scanning fairly cheaply, we’ll have to use phenotype as a proxy.
The scanning is only one issue – the other is the personalization of pharmaceutical treatment. The cost/benefit of treatment individualized to each person’s genetic composition is far, far off in the future despite the advent of cheaper genome scanning. The direction of research will likely be towards groupings and race is a significant category for such grouping. There are others but to do the sorting will require more sophisticated inquiry processes and tests which might be difficult to justify at the initial diagnostic level, thus the process will unfold in a probabalistic manner – go with the best odds at each step. Let’s look at depression – 40% of Blacks metabolize anti-depressants very slowly so when they are given a standard dosage of Prozac they tend to suffer from nausea, insomnia and other side-effects and may actually cease drug treatment as a result. The physicians who are aware of this issue tend to prescribe initial dosages that are about half the size of those given to whites, then assess how the patient reacts, and then if they feel it warranted, they increase the dosage to standard level and thus provide better care to their patients. These physicians are parsing by race because they know it has meaning to the care that they provide. I’m arguing that HIV/AIDS research needs to look at the CCR5 variation and see if the lives of Black HIV/AIDS patients can be improved by the knowledge that develops.
Tango,
I appreciate your break down of the matter. Thank you for the taking the time to express it so clearly.
I am trained as a cultural anthropologist, and that’s where my theoretical sympathies lie. Consequently, when looking at your data, I have some other questions about why we choose and how we frame these studies. I’ll give it some thought.
Such education would need to be culturally specific since HIV/AIDS disproportionately affects blacks.
Can you provide some examples of what you mean by culturally specific? On the flip-side you can share with us why you think Black women are disproportionately immune to the non-culturally specific message – why does that message click for some men and women but not as many Black women?
Secondly, discussions about self-esteem and female empowerment must take place within black communities. Instruction in self-empowerment will help black women affected by the conditions of poverty to increase their self-awareness without feeling the need for male capitulation.
What leads you to believe that there will be a cause and effect between raising the self-esteem and enpowerment of Black women and lowering HIV/AIDS infections? Can you be more precise in exactly what message, behavioral modification, philosophy, etc will be taught?
Grassroots activists and politicians of all colors need to address the multiple factors that are leading to the infection and spread of HIV/AIDS amongst black women.
Where is the balance point between society helping those who need help and letting people make their own mistakes?What message does it send when society makes a concerted effort of outreach, education, behavior modification and these efforts are shown to work for most people but not for some specific groups? Does this imply that some groups need a more intrusive effort directed at them? Where is the limit of intrusion and paternalism drawn? If we can justify more intrusion into people’s lives in one area of social/health policy then doesn’t that lower the barriers for intrusion into other areas of those people’s lives?