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I attended the 28th Civil Liberties and Public Policy Conference at Hampshire College. I found the conference very empowering as I shared countless inspiring discussions with other thinkers and doers, reinvigorating my desire to be a part of this movement. A striking discussion I was blessed to have experienced was during a session on global HIV/AIDS. During this session, one of the speakers presented on microbicide research and the hope that she believed microbicides, compounds that can be applied inside the vagina or rectum to protect against STI’s including HIV, would offer women internationally.
Having attended congressional briefings and read scientific journals on microbicides, I was excited to see that there was active dialogue surrounding the research that was unfamiliar to many in the room. When others sitting in the session were told that microbicides could not offer rates of efficacy that were comparable to condoms, it was evident that many silently reflected on why we would want to invest resources to support such research. However, many in the room had simply failed to connect access to condoms, mutual monogamy, and other ideal options with false realities.
Today many of these prevention options are not feasible practices in the world, particularly for our women. Unfortunately, women do not always have the social or economic power necessary to negotiate condom use, insist on fidelity or the means to control other aspects of their lives that put them at risk. Hence, the introduction of microbicides would offer women an option, the option to take control over their sexual and reproductive health. It empowers women to take action and protect themselves. This new method would offer a form of harm reduction when condom negotiations fail amongst partners.
But just as I was feeling hopeful, hopeful that with the development of microbicides we could prevent and or reduce HIV infections, hopeful that women could silently reinstate their power and right to make informed decisions and actions that could potentially save their lives, a woman in the session stood to speak. Rather than sharing my excitement and hope, she raised a very valid point that had not yet crossed my mind and introduced me to another perspective, another angle with which to view this field of research.
This distressed woman expressed that despite the great benefits of microbicides, we must be mindful of the fact that we have made a number of careless assumptions. We have assumed that women will have access to microbicidal resources and women will not face rape and or sexual violence. Reality depicts that today women across the globe still lack access to condoms and other methods of contraception and are still victims of sexual violence. In these situations, the development of microbicides would be useless.This all brings us to the core of all of these issues: social structures.
Have we retreated from the battlefield that leads us to the true culprit of this epidemic? Are we ignoring the structures that contribute to the disproportionately affected worldwide by HIV/AIDS?
Many of this world’s population still does not even have access to condoms, so do we expect them to be supportive of microbicidal research? Should they be hopeful in this research when they do not represent those receiving antiretroviral drug treatment nor sufficient foreign assistance, but they never fail to be the subjects of our research?
What about those currently living with HIV or battling AIDS? Rather than asking ourselves how we can mutate CD4 sites on Helper-T cells, how to inhibit HIV reverse transcriptase to inhibit viral replication, how about we ask our selves how can we ensure that treatment reaches more infected individuals.
How can we confront the social structures that provide the fuel for this epidemic?
1) Microbicides Research often provides a higher standard of care than what people in the trials would otherwise have gotten
2) In no way are the people who advocate microbicides research and development (like me) advocating for NOT addressing the root problems but instead we are saying that we need to do both, address the real problem while also conducting research that could potentially save many lives.
3) Also many of the microbicides in development are being made with a focus on long-term protection to help prevent infection from unexpected and spontaneous intercourse (so that it could prevent the spread of HIV)
For any of those interested in microbicides and would like to learn more please visit:
Global Campaign, the website for the global campaign for microbicides that has the largest informational database on microbicides research ethics, trials and other pertinent information (such as now gender based violence contributes to the HIV epidemic).
http://www.global-campaign.org/
I recall at least one trial in South Africa that was a large set back to microbicide research because it failed to consider the strong pressure women face to become pregnant and have children (even though avoiding pregnancy was part of their participation in the trial, social/cultural/economic pressures prevailed).
I also think it's a pretty fair argument that many new prevention technologies are being developed (microbicides/preventative ART/vaccines) without looking to how those technologies will actually be distributed to low- and middle-income countries and be made available to those who need them most.
In an AIDS industry where "cost effectiveness" still prevails as a central determinent of programming, I'm skeptical. While us advocates may understand that social and biological drivers of HIV don't exist in alternate universes, those actually calling the shots don't quite get it.
Ideally, research would take all four points into account. At the very least, we have to look to the margins to start to make a difference.
I personally know some very thoughtful, informed people who are working on microbicides research/implementation. I think there are those out there that understand power differentials and how public health intersects.
As microbicides become more affective, I see many ways that they can be one of the vehicles of change. If microbicides can be produced low-cost, they could be distributed in a way that promotes education and empowerment around sexual and reproductive health, violence, STIs, etc. Peer education/community based education programs that already exist could incorporate this distribution/education and the programs could be examined.
I highly suggest for any one interested in learning more about this issue to take a free online course on microbicides by the global campaign or check out this page of resources and information. The more educated we are about an issue, especially about a new and complex issue such as microbicides, the better it is for our movement and those we are advocating for.
Now I know that no movement is perfect and microbicides research and development has had its snags, but in the end I think that these people are doing good work with the end user in mind and for that I appalud them.
However I think that if we are going to pick on a certain HIV prevention technology as not being culturally sensitive or having end-users in mind during development, I really think microbicides are not a good example of this. This is a product that is created WITH the intention of protecting women from HIV infection when they can not negotiate sex. It is not assuming to change any societal issues - its goal is simply to work with the society we have NOW and save lives. As reproductive justice activists it is our job to make sure that we are working both for long term revolution of societal injustices but also to make sure that we are helping those with no choice but to deal with those injustices for the time being.
Because the bottom line is, regardless of how long it will take us to get to a society where women can negotiate safe sex- they can not right now! For example, right now condom use is quite low in these areas. A study of 15 African countries by the London School of Hygiene and tropical medicine has found that in Subsaharan Africa:
Less than 7% of women used a condom in
the last sex act with their main partner.
Less than 50% of women with casual partners
used a condom in last sex act with
their casual partner.
Microbicides researchers have partnered with those they seek to treat with microbicides to make sure that trials were ethical, culturally sensitive and that the product was really something that would be useful and wanted by the women in the countries HIV is most prevalent. This is the reason why the Global-Campaign for microbicides was started to encourage this type of dialogue and advocacy. Information about the Global Campaign's efforts to engage with and promote dialogue and participation with Sub-Saharan Africans is available at:
http://www.global-campaign.org/clientfiles/EasternAfrica-MappingReport.pdf
A few things have been brought up in this discussion so far that I would like to address:
1. New HIV prevention techonologies are being developed without looking into distribution:
I think theres a general consensus that one of the largest obstacles facing practictioners of global health right now is this exact problem: delivery. How to deliver these products in the most culturally appropriate, risk-minizing and cost-effective way. (more about that later) However I do think that there are alot of people in this feild that are very mindful of this as they go into global health and international reproductive health. However I do not think microbicides are the best example of this because microbicides have really been developed as an initiative that has taken into consideration community involvement and participation. The microbicides movement was started out as a movement to help prevent HIV infection in Subsaharan Africa WITH the intention of this being a tool that could work for women who can not negotiate safe sex. For more information on this please visit the following link, it contains studies and information about how this was done:
Global Campaign for Microbicides: Culture and Acceptability
African Microbicides Advocacy Group
2. Prengancy and Microbicides Trials and using this as an example of cultural insensitivity in Microbicides research
So I think this is a good example of some of the misunderstanding that is common with microbicides research. Women always have a right to pregnancy and under most circumstances pregnancy should not fundamentally exclude women from participation in research trials. However in the case of microbicides which are a product still in development, the effects of the product on fetal development are still being assessed. It is therefore responsible and ethical that researchers will only test on those women who are not trying to get pregnant. If they try to identify those women during the course of a study and for some reason the women were misclassified or changed their status this is where we have trial problems.
In this case it is not so much that researchers were being culturally insensitive but as is normal in drug development, it can be difficult to answer more than one question at a time in research.
For more information about Pregnancy and Microbicides trials check out this informative document:
"Frequent pregnancy testing in microbicide
trials is necessary to minimize fetal exposure
to the study product. Despite efforts to enroll
women who do not wish to become pregnant,
a certain number of women will inevitably
fall pregnant during the course of a study,
and most but not all researchers have seen
unexpectedly high pregnancy rates among
participants—as high as 76 per 100-personyears.
55 Pregnancy rates were highest among
women with multiple partners in areas with
low contraceptive use. High rates are due
in part to the frequent pregnancy testing
implemented, which results in the detection
of a high number of pregnancies that would
otherwise go unnoticed. Approximately
one-third of all pregnancies result in early
miscarriage without a woman or her provider
ever knowing that conception occurred.56,57
Pregnancy in microbicide trials raises two
issues. First, women who become pregnant are
taken off the study product either entirely or
for the duration of their pregnancies. If many
women become pregnant, the ability of the
trial to answer the fundamental question—
does the product prevent HIV acquisition?—
is significantly reduced. Second, it raises
researchers’ ethical obligation to address the
pregnancies that do occur—for example,
counseling on legal and available pregnancy
options and access to pregnancy related services."
General Resources
Free Online Course on Microbicides
Thanks!