I had a chance to participate in an “HIV warfare” simulation game in a business school class yesterday. It was pretty interesting—after a little background on the epidemiology and projections of the disease, we split into two groups: the private sector and the donor (NGO) community. I was in the first group, which was a good thing because I was a little confused about what the donor (NGO) community referred to (I would normally split those up, as donors have money and determine priorities, whereas NGOs are more likely to be implementing and have less influence).
I spend most of my time surrounded by people who are well informed about HIV and generally share my ideas about normative models of combating the disease. So, I was caught pretty off guard about how this bright but uninformed population thought about the disease. I thought I’d take the chance to offer some thoughts on what I think is well established, and some thoughts about how we could use this data to create more informed delivery models.
Separating prevention and treatment is a false dichotomy. A good program will deliver both. For a variety of reasons—people are more likely to get tested when treatment is available, stigma decreases as the diagnosis ceases to be a death sentence, BUT, treatment is expensive and preventing new cases of HIV is always a better solution. One article on PLOS medicine (open access) shows that with a combined approach, by 2020 we could potentially avert almost 30 million infections and reduce the number of people on treatment by more than 50%. As treatment has become available, relatively fewer and fewer resources have been available for prevention (in absolute terms, this may not be true. I will investigate. One article here talks a bit about funding allocation). It’s unclear as to why this is—some people say that it’s hard to measure successful prevention, whereas it’s easy to measure “number of patients enrolled on treatment” and similar indicators. Some say that the pharmaceutical company saw a huge opportunity and successfully changed the conversation. Simultaneously, many grassroots organizations had taken up the cause of people living with HIV/AIDS, both in the US and abroad, and they lobbied for treatment (one well know example is the Treatment Advocacy Campaign of South Africa). Fewer groups took up the cause of HIV-free people. For whatever reason, we’ve reached a point where treatment gets the center stage. I would argue that relatively minor investments in prevention could have great impact.
Even as I type that last sentence, I get a little uncomfortable with my confidence in our ability to do things well. HIV prevention is a HUGELY political area—HIV by its very nature requires society to think about it’s often marginalized or stigmatized populations: men who have sex with men, injection drug users, and commercial sex workers. Sex and drugs, two areas where controversies and politics are rife. Despite significant evidence that for concentrated epidemics (i.e. where HIV exists largely in certain sub populations and is not widespread) targeted prevention efforts can be very effective, politicians seem reluctant to invest in these strategies, preferring instead to educate school children and other “innocents.” This may relate back to the treatment preference, as the faithful wife who got HIV from her husband is more compelling image than the injecting drug user getting clean needles to prevent contraction of HIV. Some authors have argued that the decision to frame poverty as a cause of HIV has ultimately led to misallocation of funding and misdirected strategies. Indeed, in many countries, wealth is associated with higher rates of HIV. But, again, the full picture is obviously more complex. If nothing else, many women and men go into sex work for economic reasons (not the best cite, but some evidence). In that sense, poverty does put people at risk for HIV. Obviously poverty could prevent people from purchasing condoms, traveling to the clinic for HIV testing, or create delays and/or interruptions in treatment. But, at the end of the day, getting HIV requires one to engage in unprotected sex or injection drug use. It’s worth noting that at least in the U.S. populations, youth across all socioeconomic classes engage in “risky” behaviors at the same rates. The difference is how many potential infected partners exist in one’s sexual network. For the poor, minorities, and men having sex with men, that percentage is higher—for the former two in large part due to injection drug use and overrepresentation in the prisons. I say to just point out the fact that “risk” is relative—it’s easy to assume that Africans have more sex or poor people have less impulse control and thus don’t use condoms, but the data don’t support that. They just happen to be closer to more people with HIV. So, I would re-write the risk factors, personally, to include, “being in a neighborhood with a large prison population”, and other factors that are less focused on individual behavior. If you want cites on that, let me know. I wrote a 20-page paper about it my senior year of college!
I’m becoming more and more convinced that condoms are a really poor solution. There is little evidence to suggest that any group, any where, has really embraced them and uses them 100% of the time. With high-risk groups, such as sex workers, they are a great solution, but in the majority of cases (67% of HIV is in sub-Saharan Africa and has moved to a generalized distribution), traditional commercial sex is not how the disease is transmitted. It’s casual or serious sex partners, but usually under the auspices of a relationship. I hesitate to say too much because transactional sex, that is, sex explicitly in exchange for gifts or money, does occur with some frequently (for one in-depth look at transactional sex across 12 sub-Saharan Africa, go here). So, there is an economic dimension to sex that can’t be ignored, but by and large, sex is occurring in a context where there is trust or at least the expectation of trust, and there’s no evidence to suggest that condoms are a popular choice in those settings.
Final thought, and building on the last one, people are smart and care about their own survival. So, there’s no need to trick people into protecting themselves, and any effort that thinks withholding information will do the trick is patronizing at best, when it’s western experts deciding that Africans shouldn’t get the full story, it’s racist. All the even marginally successful HIV prevention success stories I can think of—Brazil, Thailand, Uganda, even the gay community in the U.S.—the solutions were locally developed. Uganda’s story is really interesting—the government actively promoted “zero grazing” (i.e. be faithful to your spouse(s)) and emphasized that condoms should be used as a last resort, versus a primary behavior change. The data is spotty, but it appears that young people delayed having sex for the first time, and most adults stuck with zero or one sexual partners. Condom usage remained low the whole time. HIV incidence fell dramatically. Western “liberal” “experts” (can’t resist the quotation marks) argue that partner reduction and fidelity are either impossible (which seems to imply that African men cannot control their sexual urges) or imposing morals on others (which we do all the time. Don’t we tell smokers not to smoke? Stigmatize drunk driving?). A lot of the discussion that followed the research demonstrating the efficacy of male circumcision as a HIV prevention tool (60% reduction over a two year period) was around the fact that people would assume that this was 100% effective and would thus engage in riskier behavior (example here). Part of me thinks that this is really context-specific; I’ve never heard anyone argue against making a heart medication available as fast as possible because they were worried that people who stop watching their weight and exercising. Discussions around rolling out the HPV vaccine to all teenage women in America was framed totally differently: let’s maximize protection and take full advantage of the preventive tools that exist. What’s the difference?
Wednesday, September 30, 2009
Thursday, September 24, 2009
Why do we care?
For the last week, it’s been difficult to check the news without hearing about Annie Le, the woman at Yale who was murdered last week. The details are tragic—a young woman, days from her wedding, strangled, and the likely suspect at the moment is a co-worker of hers. At the very least, there appears evidence that the murder was not random. The medical examiner is not releasing information at the moment confirming whether or not Miss Le was sexually assaulted prior to her death.
The story is obviously sad. But what separates it from the dozens of other stories about women who are victims or attempted or completed violent crimes? If you watch the news, you’d think that Miss Le was a unique case—that the motivation for the coverage is the rarity of such an event.
We live in a society where the people most likely to hurt or kill women is the men that they know. A third of all women who are victims of homicide are murdered by their husbands or former husbands (interesting side note, intimate partner violence is one reason why women's health care costs on average are so much more than men's). If one backs up a step to include women’s friends and acquaintances, you can account for almost everyone who would hurt them. In virtually 90% of sexual assaults, the perpetrator is an acquaintance of the victim. Random violence is the exception rather than the norm.
So why are we hearing so much about Miss Le? In theory, I think greater coverage of violence against women is a good thing. But I’m troubled by the tone and motivation we see in this case. Is it that she’s beautiful? Talented? A Yale student? About to be married? I honestly don’t know. Given the photo montage that CNN and other channels have compiled, they obviously expect us to react viscerally to her beauty and youth. Last week I heard that she’d recently written a piece in the Yale newspaper about how street smarts can help you avoid being the victim of crimes, such as muggings and assaults. I’m not sure why this detail is relevant to the case. Again, I’m struggling to understand the motivations here. Also disturbing was the media’s aggressiveness in asking about whether Ms. Le was sexually assaulted prior to her death. Do we grieve for victims of rape that die, but not those that live? Is it out of empathy or morbid curiosity that we ask?
It’s an interesting contrast to look at the recent “Craig’s List killer” story, about the BU medical student who is accused of killing several masseuse/sex workers that he contact online and met in Boston hotels. There, we know so little about the victim—the entire focus has been on the perpetrator; a medical student with a girlfriend—the unexpected killer. We look for clues in his behavior to explain his actions.
Today, the coverage on the story focused a little more on Mr. Clark, the top suspect. A white male, evidently in high school he was a member of an Asian awareness group. This is the most suspicious detail that the media has been able to dig up yet; rather weak, if you ask me.
I would hypothesize about the treatment of the suspected perpetrators, I would say that society wants to demonstrate their deviance from the norm. By highlighting their differences from the average, society can continue in its habitual existence without needing to reform. The blame lies on the individual’s internal abnormalities. The average perpetrators make us the most nervous. That BU med student, and Mr. Clark, look an awful lot like normal guys. A lot of their colleagues describe them as “nice guys—the kind that would never do this kind of thing.” Now, that should scare us a bit. If violence against women has become so ingrained in our culture that normal individuals act on it, society will need to have a crisis of conscience and massive change in its standards. I doubt that such a small number of crimes will catalyze this; it’s a conclusion with a lot of implications and responsibilities (we’ve been able to ignore it this long). But, if these stories keep getting coverage, even if it’s only the ones that involve highly educated, attractive perpetrators and/or victims, maybe something will get started.
I’ve tried not to watch or read about this story; I do find it very sad. But I find particularly sad because Miss Le is representing a much larger population of victims than is immediately apparent. After September 11, 2001 Catharine MacKinnon, one of my heroines and a great advocate of women’s rights in the legal sphere (domestically and abroad) wrote a piece wondering why the government had responded with such strength to that attack, when the same number of women with killed by their husbands annually, and their lives went without notice. This essay is included in her book, “Are women human?” provocatively arguing that if the rights that we grant all humans are not granted to women, that implies that they have sub-human status. Great read.
I’m open to refute. If someone wants to challenge my decision to frame this as violence against women, I’d love to hear it. I wonder how often a man is strangled by a colleague. And whether the question of sexual assault would be such a focal issue. Or how often those stories get ignored as well. But I’m most interested in how we can begin to address the violence (against women and men) head on, perhaps specifically using opportunities created by the media.
The story is obviously sad. But what separates it from the dozens of other stories about women who are victims or attempted or completed violent crimes? If you watch the news, you’d think that Miss Le was a unique case—that the motivation for the coverage is the rarity of such an event.
We live in a society where the people most likely to hurt or kill women is the men that they know. A third of all women who are victims of homicide are murdered by their husbands or former husbands (interesting side note, intimate partner violence is one reason why women's health care costs on average are so much more than men's). If one backs up a step to include women’s friends and acquaintances, you can account for almost everyone who would hurt them. In virtually 90% of sexual assaults, the perpetrator is an acquaintance of the victim. Random violence is the exception rather than the norm.
So why are we hearing so much about Miss Le? In theory, I think greater coverage of violence against women is a good thing. But I’m troubled by the tone and motivation we see in this case. Is it that she’s beautiful? Talented? A Yale student? About to be married? I honestly don’t know. Given the photo montage that CNN and other channels have compiled, they obviously expect us to react viscerally to her beauty and youth. Last week I heard that she’d recently written a piece in the Yale newspaper about how street smarts can help you avoid being the victim of crimes, such as muggings and assaults. I’m not sure why this detail is relevant to the case. Again, I’m struggling to understand the motivations here. Also disturbing was the media’s aggressiveness in asking about whether Ms. Le was sexually assaulted prior to her death. Do we grieve for victims of rape that die, but not those that live? Is it out of empathy or morbid curiosity that we ask?
It’s an interesting contrast to look at the recent “Craig’s List killer” story, about the BU medical student who is accused of killing several masseuse/sex workers that he contact online and met in Boston hotels. There, we know so little about the victim—the entire focus has been on the perpetrator; a medical student with a girlfriend—the unexpected killer. We look for clues in his behavior to explain his actions.
Today, the coverage on the story focused a little more on Mr. Clark, the top suspect. A white male, evidently in high school he was a member of an Asian awareness group. This is the most suspicious detail that the media has been able to dig up yet; rather weak, if you ask me.
I would hypothesize about the treatment of the suspected perpetrators, I would say that society wants to demonstrate their deviance from the norm. By highlighting their differences from the average, society can continue in its habitual existence without needing to reform. The blame lies on the individual’s internal abnormalities. The average perpetrators make us the most nervous. That BU med student, and Mr. Clark, look an awful lot like normal guys. A lot of their colleagues describe them as “nice guys—the kind that would never do this kind of thing.” Now, that should scare us a bit. If violence against women has become so ingrained in our culture that normal individuals act on it, society will need to have a crisis of conscience and massive change in its standards. I doubt that such a small number of crimes will catalyze this; it’s a conclusion with a lot of implications and responsibilities (we’ve been able to ignore it this long). But, if these stories keep getting coverage, even if it’s only the ones that involve highly educated, attractive perpetrators and/or victims, maybe something will get started.
I’ve tried not to watch or read about this story; I do find it very sad. But I find particularly sad because Miss Le is representing a much larger population of victims than is immediately apparent. After September 11, 2001 Catharine MacKinnon, one of my heroines and a great advocate of women’s rights in the legal sphere (domestically and abroad) wrote a piece wondering why the government had responded with such strength to that attack, when the same number of women with killed by their husbands annually, and their lives went without notice. This essay is included in her book, “Are women human?” provocatively arguing that if the rights that we grant all humans are not granted to women, that implies that they have sub-human status. Great read.
I’m open to refute. If someone wants to challenge my decision to frame this as violence against women, I’d love to hear it. I wonder how often a man is strangled by a colleague. And whether the question of sexual assault would be such a focal issue. Or how often those stories get ignored as well. But I’m most interested in how we can begin to address the violence (against women and men) head on, perhaps specifically using opportunities created by the media.
Tuesday, September 15, 2009
Sustainability of Hope
“Hope” has been the word of the hour since Obama’s campaign adopted it
as a key concept in his concept. While generally in the aid world, we
tend to focus more on the tangible resources, I think that hope has a
great deal of influence on the allocation of funding and attention.
I’m beginning a project focused on large-scale HIV prevention efforts
around the world. With the advent of antiretroviral therapy, access
to treatment has become the rallying cry for the AIDS community. And
indeed, millions of HIV-positive people have received access to
treatment, and often very good, comprehensive services, through the
programs made possible through PEPFAR and Global Fund monies.
Nonetheless, without bringing down the incidence rate significantly,
in a sense all we’re doing in bailing water out of a sinking ship
without addresses the structural problems. That’s easy to say, but
prevention remains an elusive concept—it’s difficult to measure,
difficult to define, and difficult to see, sometimes. As a result,
some narrow interventions, including condom distribution and
counseling have received disproportionate amount of funding without
producing results, while broader-based interventions, such as poverty
reduction, promotion of women’s rights, and increased access to
education, which may not be proximate causes but undoubtedly relate to
vulnerability, struggle to find resources. I am always struck by
this, because I feel that those prevention activities are just another
form of bailing water. Attacking the fundamental causes will require
us to really understand the societal context and dynamics, implement
long-term programs, and be patient as population-level change doesn’t
occur overnight.
I’m sure as I delve into this project, I’ll have more informed
thoughts on these issues and want to share them. Actually, this week
my mind has been in an entirely different realm, that’s elucidated
these issues very clearly. For the past four years, I’ve worked with
Harvard’s Office of Sexual Assault Prevention and Response to educate
freshman women about sexual assault, risk reduction, and resources on
campus. All freshmen are required to attend a presentation that
attempts to use humor to talk about gender norms and how they relate
to sexual assault, and then participate in a one-hour facilitated
discussion. In those discussions, we always share the tragic
statistic that 20-25% of college women will be the victim of an
attempted or completed rape. This number is unbelieveably high—what
would people say if we classified these as hate crimes: the idea that
1 in every five women will suffer a hate crime during college for some
reason may sound much more compelling.
While I was familiar with that statistic, what I did not realize that
is the department of justice has been conducting this survey for over
20 years. And guess what—that statistic has, in their language,
“remained remarkably consistent”. In other words, nothing that has
been done in the past twenty years has improved women’s control of
their sexuality on campus. What has been done is create resources for
victims. At Harvard in particular, the response team, composed of
passionate individuals possessing huge amounts of compassion and
empathy (though not institutional resources), victims who come forward
for support can be expect to met with some of the highest quality
services available anywhere. But I have twenty years worth of data in
front of me now to say that in terms of prevention, we are failing
young women. And no one should be satisfied by simply knowing that
victims now have places to go, because most victims still don’t seek
out services and even though many victims are able lead happy,
productive lives, the road to that recovery is often laden with
disruption and pain. Why do we ignore this issue? Has it been
classified as “hopeless”? I would believe that changing the dynamics
of what goes on in the bedroom would be extremely difficult—in the
critical moments, individuals are making decisions independently and
with no one to exercise any sort of social pressure over them. Which
inherently means that one would have to fundamentally shift the
paradigm of sexual dynamics to reduce or eliminate the incidence of
sexual assault.
You can see the connections to HIV prevention—at the end of the day,
what fuels HIV transmission is inextricably linked to what causes
sexual assault. Perhaps an extreme example of this comes from Rwanda,
where during the genocide, Hutu men with HIV were often encouraged to
rape Tutsi women.
Does is make sense to think about HIV prevention in a separate silo
than sexual assault prevention? Or should it be framed in a positive
way—promotion of safe, healthy sexual practices? How we define the
problem will determine the modes of intervention, and no doubt we’ll
start with the areas where we think (i.e. hope) we’ll have the biggest
impact. I’m not disagreeing with this strategy in principal, but I do
think it’s dangerous to get so focused at piece of puzzle that we lose
sight of the full context. Let’s not let another twenty years pass us
by and have people remarking about how incredibly consistent HIV
and/or sexual assault rates have been.
as a key concept in his concept. While generally in the aid world, we
tend to focus more on the tangible resources, I think that hope has a
great deal of influence on the allocation of funding and attention.
I’m beginning a project focused on large-scale HIV prevention efforts
around the world. With the advent of antiretroviral therapy, access
to treatment has become the rallying cry for the AIDS community. And
indeed, millions of HIV-positive people have received access to
treatment, and often very good, comprehensive services, through the
programs made possible through PEPFAR and Global Fund monies.
Nonetheless, without bringing down the incidence rate significantly,
in a sense all we’re doing in bailing water out of a sinking ship
without addresses the structural problems. That’s easy to say, but
prevention remains an elusive concept—it’s difficult to measure,
difficult to define, and difficult to see, sometimes. As a result,
some narrow interventions, including condom distribution and
counseling have received disproportionate amount of funding without
producing results, while broader-based interventions, such as poverty
reduction, promotion of women’s rights, and increased access to
education, which may not be proximate causes but undoubtedly relate to
vulnerability, struggle to find resources. I am always struck by
this, because I feel that those prevention activities are just another
form of bailing water. Attacking the fundamental causes will require
us to really understand the societal context and dynamics, implement
long-term programs, and be patient as population-level change doesn’t
occur overnight.
I’m sure as I delve into this project, I’ll have more informed
thoughts on these issues and want to share them. Actually, this week
my mind has been in an entirely different realm, that’s elucidated
these issues very clearly. For the past four years, I’ve worked with
Harvard’s Office of Sexual Assault Prevention and Response to educate
freshman women about sexual assault, risk reduction, and resources on
campus. All freshmen are required to attend a presentation that
attempts to use humor to talk about gender norms and how they relate
to sexual assault, and then participate in a one-hour facilitated
discussion. In those discussions, we always share the tragic
statistic that 20-25% of college women will be the victim of an
attempted or completed rape. This number is unbelieveably high—what
would people say if we classified these as hate crimes: the idea that
1 in every five women will suffer a hate crime during college for some
reason may sound much more compelling.
While I was familiar with that statistic, what I did not realize that
is the department of justice has been conducting this survey for over
20 years. And guess what—that statistic has, in their language,
“remained remarkably consistent”. In other words, nothing that has
been done in the past twenty years has improved women’s control of
their sexuality on campus. What has been done is create resources for
victims. At Harvard in particular, the response team, composed of
passionate individuals possessing huge amounts of compassion and
empathy (though not institutional resources), victims who come forward
for support can be expect to met with some of the highest quality
services available anywhere. But I have twenty years worth of data in
front of me now to say that in terms of prevention, we are failing
young women. And no one should be satisfied by simply knowing that
victims now have places to go, because most victims still don’t seek
out services and even though many victims are able lead happy,
productive lives, the road to that recovery is often laden with
disruption and pain. Why do we ignore this issue? Has it been
classified as “hopeless”? I would believe that changing the dynamics
of what goes on in the bedroom would be extremely difficult—in the
critical moments, individuals are making decisions independently and
with no one to exercise any sort of social pressure over them. Which
inherently means that one would have to fundamentally shift the
paradigm of sexual dynamics to reduce or eliminate the incidence of
sexual assault.
You can see the connections to HIV prevention—at the end of the day,
what fuels HIV transmission is inextricably linked to what causes
sexual assault. Perhaps an extreme example of this comes from Rwanda,
where during the genocide, Hutu men with HIV were often encouraged to
rape Tutsi women.
Does is make sense to think about HIV prevention in a separate silo
than sexual assault prevention? Or should it be framed in a positive
way—promotion of safe, healthy sexual practices? How we define the
problem will determine the modes of intervention, and no doubt we’ll
start with the areas where we think (i.e. hope) we’ll have the biggest
impact. I’m not disagreeing with this strategy in principal, but I do
think it’s dangerous to get so focused at piece of puzzle that we lose
sight of the full context. Let’s not let another twenty years pass us
by and have people remarking about how incredibly consistent HIV
and/or sexual assault rates have been.
Tuesday, September 01, 2009
Updating "us" and "them"
Great TED talk by Hans Rosling, whose work on www.gapminder.org has helped me conceptualize population health around the world in new ways. Here, he explains why the idea of "developed" and "developing" countries fails to capture the complexity of how the world is changing.
He also praises USAID for supporting (financially and technically) the collection of child mortality data internationally and making it available for free online. Without data, it'd be difficult to have any of these conversations or advocate for the expansion of programs that are working. So, while it often seems callous to focus on data collection in the context of people dying from poverty or lack of accessible resources, in the long run there is no substitute for data-informed decision making.
One sees this a bit right now with some of the efforts to promote the collection of patient-level data in HIV facilities in Africa in electronic medical records. Some of the clinics I visited on a recent trip were incredibly understaffed--in one clinic, a mere two NPs and 3 PAs saw 300 patients in an average day, from 9-1, covering all steps from registration including lab, pharmacy, and counseling services. It was difficult for me to justify internally the data requirements put on them by various stakeholders. And yet, when I look at what Dr. Rosling presents here, and think about whether we'll be able to do similar analysis on improvements in combatting HIV, I have to acknowledge that it will require data collection efforts like those being pushed on implementers now. Though, data quality would undoubtedly be higher if dedicated staff were supported. And quality of care data is collected about would undoubtedly be higher with greater clinical resources and support!
http://www.ted.com/talks/hans_rosling_at_state.html
He also praises USAID for supporting (financially and technically) the collection of child mortality data internationally and making it available for free online. Without data, it'd be difficult to have any of these conversations or advocate for the expansion of programs that are working. So, while it often seems callous to focus on data collection in the context of people dying from poverty or lack of accessible resources, in the long run there is no substitute for data-informed decision making.
One sees this a bit right now with some of the efforts to promote the collection of patient-level data in HIV facilities in Africa in electronic medical records. Some of the clinics I visited on a recent trip were incredibly understaffed--in one clinic, a mere two NPs and 3 PAs saw 300 patients in an average day, from 9-1, covering all steps from registration including lab, pharmacy, and counseling services. It was difficult for me to justify internally the data requirements put on them by various stakeholders. And yet, when I look at what Dr. Rosling presents here, and think about whether we'll be able to do similar analysis on improvements in combatting HIV, I have to acknowledge that it will require data collection efforts like those being pushed on implementers now. Though, data quality would undoubtedly be higher if dedicated staff were supported. And quality of care data is collected about would undoubtedly be higher with greater clinical resources and support!
http://www.ted.com/talks/hans_rosling_at_state.html
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