FULL OF GRACE: Rae Lewis Thornton Talks About the GRACE Clinical Study

Now that AIDS is the leading cause of death for Black women ages 25-34, it's time to get on the ball, not only around prevention and education but the SCIENCE of HIV and AIDS which includes clinical trials.

One pharmaceutical company, Tibotec Therapeutics Clinical Affairs, a division of Ortho Biotech, is currently conducting the GRACE study (Gender Race And Clinical Experience) which is the largest clinical study to evaluate gender and race differences in response to an HIV mediation.

This means that GRACE will take over 400 HIV-Positive participants -- 70 percent whom will be women who have previously been intolerant to medication -- and look at how PREZISTA/rtv plays out differently with race and gender.

25 Years reaches out to long time AIDS activist and pistol, Rae Lewis Thornton, spokesperson for the GRACE study, about why a clinical trial based on race and gender is long overdue.

************CALL 1-866-512-7943 to find GRACE Study sites************

Why are studies like this important?

Historically with HIV medicine trials, there have primarily been white men in these studies. Part of it has been because white men have had access. It's partly been because white men have been on top of their health care and really taken chances, and taken a study drug if the drug seems promising. And so they've been in the studies and that's been it. This study is different because the company is saying We don't want just white men. We're going to make a conscious effort, a very deliberate decision to enroll seven women out of 10 persons. That's major. Because what we know in a lot of cases is that medicine works differently for women than it does for men.

Then they said, you know what, we need to take this a step further. How does this medicine work for black women? We're different from white folks. Oprah says this all the time, "Black don't crack." Because we have more melanin in our skin. And it's true. So if it's true that our physiology is different from our white counterparts, how does medicine respond differently for us?

If you recall, some years back they conducted an aspirin a day heart study. They gave 5000 men an aspirin a day and it worked. But then we found out that the aspirin a day heart worked differently for women than it did for men. And one of the questions that was posed was why didn't you put any women in the study? Well, all the men in the study were doctors and you could "rely on them." Well, you couldn't rely on nurses? And so that's why this study is different because it's making a conscious decision to look at gender differences, and it's making a conscious decision to look at racial differences. And that's why I commend them.

Has the study started?

They are enrolling people in all the sites around the country. The enrollment is still open [through November 2007].

Are you finding it difficult to promote this trial to black people -- black women in particular -- who are to make up 70% of the GRACE study?

I think you're going to get some apprehension. Clearly, I think you're going to get more apprehension from people who don't have HIV than from people who have HIV. But when you look at this particular study, I get a lot of lay people -- non HIV positive infected people -- saying to me, well what about the Tuskegee Institute, do you think it's really good for black people to get into a study? And I validate that fear; I acknowledge it, I accept it. But a woman living with AIDS, who has set up a drug resistance, who has no place to go with medication, they're going to say this is a good option for me.

We are 64% of the HIV cases in this country. 72% of women infected with HIV in this country are African Americans. We are too disproportionately impacted by this disease not to participate in every level we possibly can. And that for me has been my argument. I have taken my time and my support behind the GRACE study is because it makes sense.

Are you being paid by the pharmaceutical company, Tibotec, or any of its subsidiaries to promote the campaign?

I am. I'm being reimbursed for my time. I believe in it. One, I'm taking the medication, you can search my track record. My name has NEVER been attached to a pharmaceutical company and medications; I've been consistent. I've been very candid, I've been forthright, I've been very critical of pharmaceutical companies. And let me back up. Remember I said that black folk have to step up to the plate and participate at every level of HIV? Well, white men have done the spinning; they've participated in drug studies and been reimbursed for their time and energy and so now, we have a pharmaceutical company who is saying that they want to bring a black woman on board and reimburse her for her time and energy too. And so it's being consistent across the board and stepping up to the plate at every level. And so I'm grateful for the opportunity to spin, but you'd better believe that I didn't believe in the GRACE study, that I wouldn't be talking to you right now. I'd still be sleep.

You were diagnosed HIV positive 20 years ago. Obviously, there are many more medications now available, and HIV has become a manageable disease and that's a good thing. But the rate of HIV in the black community, especially black women, has also risen dramatically. Are you encouraged or discouraged by what's now happening around HIV and AIDS?

I was diagnosed HIV positive in 1986 and I was diagnosed with full-blown AIDS in '92. It depends on which areas of HIV we're looking at, whether the glass becomes half full or half empty. For we have made an enormous amount of progress in terms of moving beyond stigma and shame but there's still so much work that needs to take place. For example, I went to get a tattoo in May and went to a tattoo parlor on the South Side of Chicago. I made an adult decision to get a tattoo. It was my birthday. I got a butterfly on my bottom back. And they told me I couldn't have it because of HIV. Looked me in the face and then wanted me to sign a consent form, and one of the "I agree that" was "I agree that I do not HIV/AIDS." So discrimination is very real. And that evening I had to go to a white tattoo parlor and get my tattoo. And that was very real for me. Of course I filed complaints with the Human Rights Commission and the City of Chicago.

Did the other tattoo parlor ask about your HIV status?

No! In fact, I called. Because I wasn't sure if I had been discriminated against. I was just devastated. And so I started calling the tattoo parlors on the North side of Chicago and said, "I have HIV can I get a tattoo" and they said, "Sure! Come on in. We use standard procedures. All tattoo parlors should be following the same procedure." Hello? So by 10 o'clock that night I had a tattoo. I had a meltdown in between but I got my tattoo. And the activist in my decided I was going to take a stand. Because for every black person who goes into that tattoo parlor, who sees on the consent form, who sees that you can't get [a tattoo] with HIV, will probably never get an HIV test. And so we have at one level, we've made some progress, we've made progress around HIV in terms of treatment and care, but African Americans still don't know we're infected. We're afraid to get tested.

Because who wants to know their HIV status when the world is cruel and unkind? Knowing your HIV status is very very scary. But to not know is dangerous. And it is a fact, the earlier you know your HIV status, the longer you live. Most African Americans are diagnosed with AIDS and not HIV. So by the time we know, we've been infected for 8 to 10 years.

What's one thing that we can do to eradicate HIV and AIDS?

AIDS is a preventable disease. Let me start there. That means you can prevent yourself from getting infected with HIV. That takes a lot of personal responsibility. That takes a lot of self-esteem to say I'm not going to have sex without a condom. No adult that has sex has to get HIV from sex. And what we do know is that 50% of women who are infected with HIV are infected because they had unprotected sex. We can reduce that number. It takes a lot of self-esteem.

To find out about the GRACE study and inclusion sites, see:

www.clinicaltrials.gov

Call 1-866-512-7943

Email: GRACEstudy@wilm.ppdi.com