CDC's AIDS definition was successfully challenged in 1993.

Discussion in 'Fibromyalgia Main Forum' started by simpsons, Jun 28, 2009.

  1. simpsons

    simpsons Member

    this is certainly food for thought by liz willow


    It might be of interest to know that the CDC's AIDS definition was successfully challenged in 1993. Below are references to this lawsuit I was able to find on the web.

    --Liz Willow


    By Josh Barbannel
    Published: Tuesday, October 2, 1990, New York Times

    Hundreds of women, children, drug addicts and homeless people disabled by the AIDS virus are being improperly denied Federal benefits because the Government is using a flawed and outdated definition of the disease, a lawsuit filed yesterday in Federal court in Manhattan charged.

    According to the suit, the people are being denied benefits even though they have been repeatedly hospitalized for disabling conditions, including gynecological disorders, tuberculosis, heart infections, bacterial pneumonia and kidney failure.

    These symptoms are not included in the definition used by the Social Security Administration.

    ''I've been having strong pains since the last time I have been in the hospital,'' said one plaintiff in the suit, identified in court papers and in an interview only by her intials, S.P.

    The Social Security Administration referred calls about the lawsuit to the Justice Department, which said it was unfamiliar with the suit.

    At the heart of the suit is a dispute over the definition of AIDS promulgated by the Federal Centers for Disease Control in Atlanta to track the spread of the epidemic. That definition has been used, the plaintiffs said, to award or deny Government benefits.

    The Federal definition lists a number of ''indicator'' diseases, like Kaposi's sarcoma, a skin cancer. The definition was drawn up after studies of early AIDS victims, often middle-class homosexual men.

    Theresa M. McGovern, a lawyer with MFY Legal Services, the lead counsel in the lawsuit, said that so far the Centers for Disease Control had not conducted large studies of the effects of AIDS on women or other groups of patients. She said it was ''irresponsible'' for the Social Security Administration to rely solely on the centers' definition.

    The suit seeks to be recognized as a class action representing thousands of women, children, drug users, homeless people and poor people with AIDS across New York State.


    S.P. et al. v. Sullivan (Federal Court, New York)

    SETTLEMENT CONFERENCE. This lawsuit challenges the Social Security Administration's (SSA) reliance on the Centers for Disease Control's grossly inadequate definition of AIDS for awarding Social Security disability benefits. The SSA regulations challenged here granted disability benefits automatically to anyone with HIV whose doctor certifies that they had one of the opportunistic infections recognized as HIV-related by the CDC. However, the CDC definition did not include many of the diseases which manifest in women, drug users and low-income people. Benefits applicants who were disabled by these non-recognized diseases not only had to provide medical evidence regarding their HIV status but also had to satisfy an additional and very difficult "functional" standard to prove they could not function normally in the work world. In July 1993, the SSA announced new regulations governing disability benefits for people with HIV which address virtually all of the
    concerns raised by our lawsuit. The new regulations added the predominant manifestations of HIV in women, drug users, and low income people as criteria by which HIV-infected individuals can qualify for disability benefits. A settlement conference with the Department of Health and Human Services before Southern District of New York Judge Cedarbaum is scheduled for mid-September. Terry McGovern of the HIV Law Project is lead counsel on the case. Other participants include MFY Legal Services, Brooklyn Legal Services, Cardozo Law School's Bet Tzedek Legal Services, and the Center for Constitutional Rights. Suzanne Goldberg is Lambda's attorney on the case.



    (Here's the history behind this:)


    From the ACT UP Oral History Project

    Maxine Wolfe Interview February 19, 2004 excerpt pages 81-93

    Jim Hubbard: What about the campaign to change the CDC definition of AIDS?

    Maxine Wolfe: Actually, I think that that was probably the best kind of campaign that you could possibly organize, using every single kind of organizing tactic and things really working well together. First of all, I think that it was a monumental change. It was a definite thing that made a difference in people's lives, because there were women who were just not getting any kind of help -- women who didn't even know they were infected, until we started doing that stuff.

    It started out by us doing this Women and AIDS teach-in -- which I loved about ACT UP, which people don't even talk about -- the teach-ins, which were just educating ourselves about issues, and then creating booklets. The handbook that we created for the women and AIDS teach-in, went all around the world. Not the book, the handbook, in its Xeroxed form, went all over the world. It went to the Australia conference. It just went everywhere. We sent it anywhere to anyone, and people found out about it immediately and started writing to us. We would just ship them out, ship them out. And, basically, because people had been doing work with women with HIV that women with HIV were getting infections. It started, actually, when we did the Cosmo thing, because we worked with -- what's her name? This woman who had done this research, showing that in Connecticut, the number of cases of bacterial pneumonia amongst women was huge, and that they were dying. And we
    started talking to these people and found out that women would show up at hospitals with what seemed like pneumonia, and nobody would do a bronchoscopy. People would assume it was bacterial pneumonia, or they would assume that it was flu and they would give people aspirin and tell them to go home, and women would die. And, she had sort of traced the death rates in the tri-state area, to show how many women had been dying of bacterial pneumonia, which was ridiculous, like it was an epidemic of bacterial pneumonia. But, it wasn't. It was HIV, really.

    So, we knew it then, okay? And we started doing all kinds of research about what kinds of infections women get. And we did this teach-in, and the teach-in was about the different infections and we actually wrote up sections that were on, for instance, what is it that occurs vaginally? Well, we did yeast infections, which, of course -- all yeast was on the Center for Disease Control definition of AIDS, but not vaginal yeast -- like, yeast is yeast. There were various forms of tubercular bacilli, that would form in women, in different places than men. And, so, we did stuff on that. And we did stuff on bacterial pneumonia. We did stuff on cervical cancer. And, I should say, after the Nine Days of Action, women's committees starting forming in other parts of the country, and we had a national women's committee that we did phone calls and stuff with, and this whole thing was worked on nationally, but it started in the ACT UP teach-in.

    And then we started talking to women with HIV, and we found out, yeah, they were getting all this stuff, and nobody knew what to even tell them about what to do. And then, we were doing this teach-in, and Terry McGovern came to ACT UP. She came to ACT UP, not about women and AIDS. She came to ACT UP, because she was going to do an action about the New York City Housing Authority throwing out somebody who had had a partner who died of HIV. And she had gone to Lambda Legal Defense, which had done the one about the private housing -- I forget what the name of that case was -- the Braschi case, I think it was. And, nobody wanted to help her. They didn't know who she was. She was a Legal Aid attorney. They gave her the brush-off, and basically said that they don't deal with that kind of client.

    And so, she came to ACT UP, because she thought that what was needed was some kind of an action outside the New York City Housing Authority and she asked us if we would do the action, because we had a Housing Committee then. And, she was sitting in the room, when we were talking about the women's infections. And she suddenly started putting two and two together, because she had been representing women who had been denied disability benefits, and she realized that they were being denied benefits, because they were having infections that we were talking about. She did not know anything about what the infections were for HIV. So then, she came to us and said, this is what I think is going on. So, in fact, then, we all also went to Lambda and they couldn't figure out how to do this, because none of them were seeing women with HIV. So, they have been trying to get the CDC definition changed to include women and IV drug users, but they had no idea how to do
    that, because they didn't know on what premise.

    But she knew that she could sue. As soon as she saw our stuff, she knew she could sue vis-a-vis the disability -- not the generic definition of AIDS, but the disability definition of AIDS, because they were being denied disability. So, she ended up -- we helped her write that lawsuit, put in all the research, and then Linda Meredith, actually, who was in ACT UP/DC, organized from DC, to do this action at Health and Human Services, which was the kick-off for the campaign.

    And, the slogan was, Women Don't Get Aids, They Just Die From It. And we had tombstones. And that's when all the women like Iris came, and Phyllis Sharpe and we had a speak-out of women with HIV, talking about all the infections that they got, and did this big demonstration and that was the day that she was filing the lawsuit. So, that was, actually, basically, to kick off the campaign, to have this thing.

    And one of the issues that we always had, even within the group that was doing that was that terror was very focused on the disability benefits, but there were other outcomes of this, that were just not about disability, which is that, if you don't define a kind of infection that's associated, you don't do research. You don't do research, you don't get any treatment. So, it's not just that you don't get disability benefits, because who wants to get disability benefits and die. It's that you want to make sure that if people are doing research or developing treatments, they're also developing treatments for the things that you get and not just what somebody else gets, and that they're not giving you drugs that haven't been tested on you that can cause cancer of the cervix, when that's something that you're going to get.

    So, we did that one, and then, Linda, before that, had been living in -- when did we do that? I have to remember the timing -- that was to launch the lawsuit. And then, Linda had been living in Atlanta before that. And, when she had been living in Atlanta, we had done actions
    with people in Atlanta. We had done actions in Columbia, South Carolina -- we had done a whole bunch of things.

    So, I knew the guy who was, then, pretty much the most active person in ACT UP/Atlanta. He was also a lawyer. His name was Chip Rowan. And, they were also wanting to do something about the sodomy demonstration. So, we decided that our first demonstration about the CDC would be about both of those things, and it would take place on World AIDS Day, which was December 1st -- it would be around that time. In October, we did the one at HHS, and then we organized this action in Atlanta that was called, Two Days, Two Ways to Fight For Your Life. And the first day was about the sodomy law in Georgia, and the other day was about the CDC definition, and that was the first demonstration that we did. And we did teach-ins down there about the CDC definition and we did a lot of -- that was the first time that we spoke to people at the CDC and that's when, whatever his name is, said, "What, lesbians get AIDS?" He was a horror. He was one of the people
    at the CDC -- I
    forget his name. I probably have totally blanked it out.

    So, we did that demonstration. But, it also involved -- that fall was an amazing fall, because that fall we also had the first -- no, that was the next fall. So, we did that, and then we did that demonstration around January, the first one was in January of 1990. The second one was in December of 1990. We did October of '89, then we did January of '90, and then we started doing this thing where we got in touch -- we did this campaign to get as many people on board as possible. We started putting out this thing about change the CDC definition. And we put out all kinds of -- let me just go back for a second. I want to make sure that I'm getting the timing right, because we got a lot of women involved -- the first women and HIV conference. We were already doing the CDC definition stuff, so we had done it.

    So, we did that action and through the action, we met people, because we were in Atlanta, and that's where the Centers for Disease Control is. There's this really great gay man, Jim Williams, who worked for the National Education Association -- their health network -- arranged for me to do a talk at their -- when the CDC held a conference for health educators. And I got to speak to these people from all over the country and tell them about CDC definition. We spoke anywhere in the United States that people would invite us -- anybody from the women's committee from around the country. So, we got loads of people to sign onto this campaign. We got people to send postcards. We got people to sign petitions. We had the most radical listing of things. We even wanted them to change the terminology, like, what is this, the way that they put people into categories for AIDS transmission is crazy, because if you ever used drugs, they put you in that category first.

    It doesn't matter what else you are. And the only people that had two categories, eventually were, like, gay men who used drugs. But, women, if they fucked somebody and used drugs, they were in the drug category. Nobody was willing to say that they got it heterosexually. This is like, about that thing you said before, just anyway that you could to keep that out of the thing. So, we got all these people to kind of sign onto this -- people who ran youth programs. We eventually had 300 people -- 300 different groups across the United States of every kind that you could imagine, who signed onto the CDC definition campaign. And we would constantly be sending them information about everything that was going on. We were sort of the center of it. And then we decided that we would do a second large action that would be in Atlanta. And that was going to be that year on World AIDS Day -- the end of that year -- I think it was 1990. But, also, over that year we had
    been pressuring the National Institutes of Health to do a conference on women and AIDS. And they didn't want to do a conference on women and AIDS, and we kept pressuring them and pressuring them, and when we did the NIH action, my affinity group sat in Dan Hoth's office and we put flyers in every file cabinet there. They've got to still be there -- about, you know, you must do women and AIDS stuff. And, eventually, we convinced them. After the 1990 San Francisco Conference, we sent them a threatening note, I must say. We had sat in their offices, which they didn't every expect. And Dan Hoth got scared to death. He was the head of clinical trials, I think, for the ACTG research system.

    And, at the San Francisco conference, we just held up a banner, because there was this whole thing that went down at this conference. But, anyway, we held up a banner. But then, Linda Meredith handed him a note and the note said, basically, we're coming back to your office. And he was not wanting to talk to us on the phone, but when he got that note, he spoke to us on the phone, and we forced him to hold a woman and AIDS Conference -- the first one -- which was held in December of '90, also. Originally, they wanted us to be part of the planning, and Linda was part of the planning, but we made it clear that we would not rubber-stamp what they did. And so, at the beginning, it was really interesting because there were all these women, who were from all over the country, who had been waiting for this day, because all of this stuff had been suppressed. There had been women researchers who had been pushing for this for years and nothing was happening. And, in
    fact, one woman said to another woman at this planning board meeting, how did we ever get this conference? We've been pushing for this conference for years, and nobody did it. And another woman said, because 20 people sat in at Dan Hoth's office, and he got scared to death.

    So, they were all willing to do the best conference there was, but the government wasn't. And, what they used to do and they still do is they run their own conferences, and they put the researchers there that they want to be there, who are going to say what they want those people to say. And at the point, what they wanted people to say was that there was no difference, whatever. And so, we, basically -- Linda, eventually dropped out of the planning because she said she wouldn't have her name associated with a conference that had been -- after the whole schedule had been set, the government people took it and totally decimated it, and put only their people there. And we wanted them to pay for women with HIV to come, and they wouldn't do it -- this whole thing. So, that's when we wrote up our first women's treatment and research agenda, and we handed it out at that conference, and we all showed up, anyway. And, all the women got organized. And, when the
    guy from the CDC spoke, we opened up a banner and everybody started screaming at him about how wrong he was. We did a lot of actions at that conference, but the main thing at that conference was that a lot of women with HIV came from all over the country, and they formed a group, and they ended up -- when Tony Fauci was speaking, and he was basically saying that they didn't know anything about women and AIDS, but he was going to talk about men and AIDS, and he started doing AIDS 101 --all hell broke loose.

    And everybody got up to the microphone and said, hey, you sit down, we have something to say. And they had written up a whole statement about, you know, the three things that they needed was, they needed the CDC to change the definition of AIDS. They needed women in clinical trials, and they needed to get their disability payments, and that sort of got a lot more women involved, and then they -- a lot of those women -- came to the CDC action, because then they got in touch with us. And so, the second CDC action -- we went down to Atlanta and did a really big action in front of the Centers for Disease Control, and also took over the head of the CDC -- his offices -- and a lot of people got arrested. It was the most pouring rain day I've ever seen in my life. It was not to be believed. And people stayed out there. Women with HIV stayed out there. It was just really powerful.

    So, after that, they thought that that was it and that we would give up. And, I think this is what was really important -- we just kept going. We didn't just do direct action after that. We did a lot of small things. We monitored what they were doing, and every time they tried to change the CDC definition and not put in women's stuff, we would do something. And we did things like -- because we had this mailing list now, from all over the country -- so, we would send out an alert. James Curran is trying to change the CDC definition. He's not putting in any of the women's infection. Write to your senator, call your congress person, tell them you're demanding a congressional investigation of the Centers for Disease Control. Boom, he would stop.

    Then he'd try again. They tried, at the CDC three or four times in the next two years, to change the definition to what they wanted it to be, which was, basically, 200 T-cells, and no specificity of women's infections or the infections that drug users got, at all. And the main reason that people supported the 200 T-cells, is because there were a lot of health care providers, who were seeing people with those T-cells, who are not considered to have HIV, because they didn't have the infections that were on the list. And so, they weren't getting reimbursed from the government. So, they wanted the 200 T-cells, and they didn't care about the rest of it. So, we just kept plugging along, plugging along. So, finally, he shows up -- and I told you, we sent this stuff all over the country and all over the world. So, a lot of people in Europe, from the World Health Organization, got in touch with us, because even though there's socialized medicine in most of those
    countries, whatever the CDC does, the World Health Organization was doing, so, they weren't recognizing women with HIV. So, we had all of this stuff.

    So, when the '92 Amsterdam Conference happened, and women from ACT UP went there, all these women from all over the world joined with ACT UP and confronted James Curran [documented by DIVA TV] and said, you have to change the CDC definition of AIDS. And he still didn't want to do it. So, we demanded that he had to hold a public hearing, to show that he was right. And first he tried to manipulate that hearing, and to only have his kind of researchers. And we got all these people to say that he was wrong. And so, he finally had a hearing that took place in Atlanta, that we got women with HIV to speak at, that we got the doctors to speak at, who had actually been doing the research. And they got up there, and they basically said, there's no question about it, here's what's going on. And we got the media down there. We got money to get women with HIV down there. We got the media down there, okay? This was after four years.

    JH: How did you do that?

    MW: You mean, the media stuff, or the women?

    JH: The media. The women, the money for the women.

    MW: They were so afraid of us by that time. We had done all these demonstrations. We had gotten groups that were so diverse, to support this campaign, from all over the country. We showed that we could get Congress people who would start to investigate the CDC. We used every single tactic that you could possibly use. It was really like community organizing and political organizing at its best. It went from the grass roots up, and we had this committed group of people. We would send out a letter and say, write a letter to your Congressman, and all these people would do it, because they wanted to change it. And then, when they happened to be at a public meeting in Amsterdam, and there were international people saying this -- and because we had developed contacts with the media, they came. Bruce Merkin wrote really excellent stuff for us, at the very beginning, in Los Angeles. And, Ellie Burkett wrote stuff for us -- articles for the big CDC definition in
    Atlanta. She wrote it in the Miami Herald, and it got picked up by other people. So, over time, we just developed all of these contacts with an incredible range of people, who realized that what we were saying was true. It wasn't like we were asking for something that was crazy. And, that there were women who were dying, because they were being denied food on their table, because people wouldn't admit that they had HIV, when they had HIV.

    So, after that hearing, at the very end, he came out to do his speech in front of the media and basically what he said is, they're right, we're going to have change the CDC definition of AIDS. And then, that fall -- in January of '94 -- it was after Katrina Haslip died. She died in December of '93, '94 -- it was '92. We had been working on it from 1988. It was 1992 that they changed the CDC definition of AIDS, to include all that stuff. And you know what? When you look at the listings of what diseases women have -- they have bacterial pneumonia, they have cervical cancer. That's what they're getting. It wasn't anything unusual. We knew that stuff. So, it was pretty amazing.

    JH: Did they change it to exactly what ACT UP wanted?

    MW: No, they didn't change -- we told them that they had to, like -- well, some things have stayed, even though they didn't want it. We wanted all testing sites to be anonymous -- that was part of our thing. We took everything that the CDC did, we had on our agenda. And, the fact that there are any left is because we fought for them, because originally, that was not true.

    They didn't change the categories, but they did put in the infections, and they put in infections that both women and drug users get. They didn't put in all the infections, but they put in the major infections. So, a good part of what we wanted was in there. But, it was an incredible victory, because it was something that affected hundred, thousands, millions of women, probably, across the world, eventually. And yet, it was incredibly political. It had a whole set of radical politics associated with it, and it was using every kind of organizing technique. And, it also showed -- you know, people always think that ACT UP didn't have any contact with -- it was sort of like the radical group to everybody else's conservative group. And the truth is, is that there were many, many service providers, across the United States and around the world, who really valued what we did. They didn't see us as being outside of them, because we got in touch with most of
    them. People don't know that. They think that everything about ACT UP was about, either capitulating to the government -- in the case of, like, selling out -- or, like, not having anything to do with the government. And I think that in its best form, the thing that was amazing about ACT UP in the best things it did, was that it did both, without giving up either. You know, you didn't capitulate to anybody, and you still got something.


    From the mission statement of the ACLU's HIV/AIDS Project (note the last sentence):

    "No one should be deprived of their basic constitutional protections of equality, privacy or free expression because they have HIV or AIDS. The AIDS Project fights to eliminate discrimination against people living with HIV/AIDS in all aspects of society, including employment, housing and public accommodations. We also work to ensure that people can make informed decisions about HIV testing and treatment, and to challenge government responses to HIV that reflect prejudice rather than scientific principles."



    Offered as food for thought.

  2. mezombie

    mezombie Member

  3. 3gs

    3gs New Member

    Not surprised,it's the CDC.

    We also went through this with POst Polio Syndrome. The whole its in your head thing. Then enough of us surivors were coming in so I guess they figured since we already had a proven disease in past docs would investigate.
  4. AuntTammie

    AuntTammie New Member

    bumping this bc some of us may need more time to get thru it.....from what I read, though, it gives at least a little hope that maybe eventually the CDC will change the name and/or def for CFS
  5. skeptik2

    skeptik2 Member

    Because of your post, I have just now contacted the Centers for Constitutional Rights and the Attorney, Theresa M. McGovern regarding a Class Action Lawsuit vs the NIH and CDC for violating our Constitutional Rights to fair and equal treatment under the law; to fair research, studies, diagnosis and treatment for M.E, which the CDC has erroneously named 'CFS' in order to deny us our rights and justice under the Law.

    I had been searching for the proper law firm in order to do this, but have terrible researching skills and am a new PC user (have had webtv for 6 years), so your wonderful, timely and informative post led me to these people.

    I can't thank you enough.

    Love, Love, Love...
  6. AuntTammie

    AuntTammie New Member

    thank you both!
  7. jasminetee

    jasminetee Member

    You go Girl. :) Thumbs up and thank you.

  8. mezombie

    mezombie Member

    To mount a successful legal challenge to the CDC's "CFS" definition, activists will need to find a "hook", like the one the AIDS activists did with the SSA regulation. No, we can't use the same "hook" because SSA doesn't rely on the CDC definition when considering CFS disability claims, but perhaps we can find another one.

    What's needed is a thorough evaluation of the CDC definition's reach. Who is relying on it and to what ends? Are people being harmed, in the legal sense of the term? Perhaps through such an investigation we can find a legally actionable claim.

    The ACLU may have the resources (even if it's a summer law clerk) to start reviewing this CDC-created mess for potential "hooks".

    [This Message was Edited on 06/30/2009]
  9. AuntTammie

    AuntTammie New Member

    the definition is certainly harmful....directly if it leads to CBT and GET being pushed as treatment, and indirectly when it screws up research by failing to include people who truly have it and by including people with other is also harmful in the way that it leads to such poor treatment by doctors and society (bc people think that all we are is tired).....I realize that these reasons may or may not actually be beneficial to the case in a legal sense, but there has to be some way to show that this name and definition are very harmful
  10. simpsons

    simpsons Member

    you go girl. stand up for our rights our human and civil rights.

    on civil rights you may find a very useful idea would be to contact jean harrison of MAME who recently won us through civil rights the right to have the cfsac videocast. jean spent time investigating the law and you may be able to work well on this together. You can find her on co cure or through MAMe.

    you may find that in a group set up as mother against ME you will find the spirit of fighting for you children grandchildren . so do drop jean harrison an email and you never know jean prob has legal contacts.

    keep us informed on the progress and if my suggestion was helpful

    love love love you too for all your
    hard work and sheer determination,
    to be in it to win it
  11. skeptik2

    skeptik2 Member

    thank you for your encouragement and advice. I won't be the one to decide how and what rights have been violated, a law firm can decide that.

    I only know too many here and across the world are being denied proper testing, diagnosis and treatment for our disease, M.E.

    The CDC has no right to exclude symptoms of an illness; no right to water down criteria to make themselves look like they are working on an illness that affects 4M people, when only probably 1M have true M.E.

    The CDCs own website says there is no biological basis for 'cfs'; so, why are they studying it? Why are they taking taxpayer money for psychosocial illness, as they claim 'cfs' to be? It is contradictory for them to say one thing and do another.

    My war cry is NO TEST=NO HELP=NO HOPE.

    Through denying us the proper testing, they are denying us proper medical treatment, making untold numbers of patients give up all hope.

    I want HOPE, I want our Constitutional right to proper research funding, diagnoses and treatment for our disease. I want it NOW!

    I won't decide the merits of the case. If the MFY and Center for Constitutional Rights won't take the case, someone else will; I will keep trying to find that 'someone', for my granddaughter's and all the future generations sake. This is an epidemic, and it's not going to stop....WE must stop it with the appropriate research, funding and treatment plans, with or without the NIH and CDC.

    Best to you all..
  12. simpsons

    simpsons Member

    we are in it to win it this time. now this time we will not be cowed by the cdc we will be part of the solution defeat is not an option we will fight to the bitter end

  13. skeptik2

    skeptik2 Member

    Look for AuntTammie's post about my lawsuit action that is now being worked on.

    Thank you for your interest, your energy, your support, your suggestions, comments, etc...all of it. I'm so grateful.