Playing Games for Treatment   5 comments

In my response last week to OBO, I put out something that I thought was controversially opposing generally held feminist theory, but I wasn’t sure where the problem was rooted. I said I felt that the authors of OBO gave up some of their independence by adopting the medical language used by a male-dominated group they were trying so desperately to set themselves apart from and fight against. Elle graciously pointed out that the only way the women were able to access that group and showed that they were capable of standing up to it was to adopt the same language used by the medical community.

This week, I saw the same sort of issue being fought over medical terminology from the activist perspective. The Epstein text shows the us-against-them battle being fought by activists until they realized that adopting medical language would give them more credibility in conversations with doctors, pharmaceutical companies, and government agencies. I’ve been trying to figure out what the difference is in the agendas of feminist authors versus HIV activists, since I had no immediate objections to the motivations in this week’s reading. I think I’m more quickly accepted the idea that activists needed to adopt medical language because the activists didn’t start the fight by being intentionally oppositional; rather, they were trying to defend their rights and preserve their opportunities with a community (the drug industry) they believed actually served them well.

What I found most interesting was the change that needed to take place inside the medical community in order for it to achieve its own goals. I understand that doctors were rarely take seriously the words of unusual, mohawk-sporting, muscle-shirt-wearing gay activists, so I understand their need to adopt medical language. What I didn’t expect was the need for the medical community to better understand the motivations of its patients not in order to treat them, but rather in order to get their assistance in studying how best to do so.

The activists needed medical help; they needed to use medical language in order to get it. The drug industry needed participants in clinical trials; it needed to use activist motivations in order to get them. The numbers we were given for participants in various studies — often lower than 500 — made surprising to me to think that AIDS activism would be sufficient to sway the approaches of medical research. However, with the potential tenfold increase in potential customers if AZT treatment got accepted for non-symptomatic patients, that commercial draw is almost impossible to ignore.

I find this to be interesting study. AIDS activists are clearly listened to and followed by the drug industry because that population is so potentially lucrative for the industry. However, feminists have not yet managed to show themselves as an equally lucrative demographic, even though women make up a majority of our population. I guess my question this week is this: is the only real reason the medical community doesn’t listen more carefully to women that we no longer consider being female an “illness”?

It’s frustrating that a particular demographic’s sheer size (such as women), the volume of their voices (such as the activists), or the desperation of their case (such as AIDS patients) is insufficient to ensure the group’s adequate treatment in the medical establishment.  It is only with a combination of all three of those components that the various industries will notice the potential financial gain to treatment. Ah, the games that must be played.

Posted October 18, 2010 by Chris Friend in Uncategorized

5 responses to “Playing Games for Treatment

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  1. Chris- Great post, although it seems to take a bit of a cynical turn at the end there – not that you aren’t right. Yet, the whole premise that the medical community doesn’t listen all that carefully to women as a distinct and lucrative demographic itself seems arguable at best to me. Rather, given the nature of the feminist rhetoric I’ve been exposed to thus far through this course, I actually wonder if at times the volume of the voices, might be exceeding the reality of the medical communities’ priorities and motives. Of course, there very well may be more of a sense of urgency about an epidemic such as AIDS (within and without of the medical community). That said, the notion that the medical community is totally incentive driven (or perhaps more accurately, money driven), which may be true in a Capitalist society, would seem in itself to be a compelling argument for socialized medicine.

  2. I was hoping you would see connections between the two movements. I think of OBOS as an activist movement, too, and I see both movements as having ambiguous stances toward medicine, sometimes oppositional and sometimes not. Also, I think Epstein does a pretty good job of showing how the AIDS activist movement was fairly heterogeneous (e.g., Project Inform vs. ACT UP).

    A useful follow-up study to Wells’ might examine how OBOS has influenced medical practice–I bet it has been substantial.

  3. Hi All:

    That doctors do not listen carefully to women or to patients with HIV or AIDS is not–I think–rooted in the groups being seen as less lucrative. Any woman who has undergone fertility treatments or delivered a baby in a hospital knows that medical care for women is expensive.

    The heart of the problem in my mind is that doctors see ‘women’s medicine’ as ‘lesser’ medicine. It is not as challenging or glamorous as say cardiology or neurology. These are ‘real’ medicine–practiced by the ‘big boys.’ There is cut throat competition amongst heart and brain surgeons. Can you see a couple of OB/GYNs throwing down?

    And gay activists would have been up against the idea that ‘they made themselves sick” or ‘if only they wouldn’t …”–this way of thinking can make it easy to dismiss the concerns of the group. I base this on my memories of ‘the gay cancer mystery’ that was on the news every night when I was a kid. The graphic behind the anchor was always the symbol for man and a hypodermic needle–ooh the visual rhetoric.


  4. There’s a list of changes that the BWHBC claim credit for on their ever-useful website. Most of the changes have to do with delivery systems for medical care–increases in women’s choices about which treatments they will get and when.
    Scholars of women’s health care point to lots of changes in medical practice in response to market pressure from women: birthing rooms in hospitals, changes in delivery protocols, changes in breast cancer treatment regimens. But these changes, like those that the BWHBC are rightly proud of, are changes that do not speak to broad issues of access to medical care or treatment. (Sheryl Ruzek has a very good essay about this in the collection edited by VL Olesen and AE Clarke– Revisioning Women’s Health and Healing. Feminist, Cultural and Technoscience Perspectives.)

  5. Chris, great post. One of the things I asked Leandra after the presentation she and Gen put on was if she thought we would even have the patient advocacy movement that is evident in today’s culture without the BWHBC. I think we both agreed that OBOS opened a perceptual door that questioned the sanctity of medical opinion. To me, this opening has been utilized and widened up by succeeding generations of activists.

    While I agree with Elle’s observations to a point, I know from personal experience and from listening to my mother’s horror stories that medicine for women has changed for the better, if in mostly incremental ways. True, there is still a lot to be done, but women are not routinely advised that menstrual cramps are a psychological problem as they were in the fifties. So much depends on the physician: my last doctor took my heart palpitations so seriously he threw me in the hospital for an overnight (turned out to be stress symptoms).

    I also agree with Kevin that the AIDS epidemic gave doctors a concentrated event to focus on, and many of them knew and wanted to help their patients. Whereas the FDA was the bad guy in the AIDS debate, I see the potential for insurance companies taking over that role in future debates. Managed care seems to be an equal opportunity roadblock in health care delivery.

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