December 3, 2009

Debra Fraser-Howze: Using Corporate Communications to Battle HIV/AIDS

After receiving a National Medical Association award for her work fighting HIV/AIDS in the African-American community, Debra Fraser-Howze speaks about today’s challenges (misinformation), priorities (testing) and promises (over-the-counter HIV tests) in fighting the virus.

Twenty years ago, Debra Fraser-Howze was among the first African-American leaders to recognize the danger HIV posed to communities of color. As a veteran of the fight against HIV/AIDS, in 1987 she founded the National Black Leadership Commission on AIDS (NBLCA) and served as its president and CEO. During her outstanding career battling the virus, Fraser-Howze served as an advisor to two U.S. presidents while on the Presidential Advisory Council on HIV/AIDS. She also served as vice chair of the HIV Human Services Planning Council in New York City and chair of the National Institutes of Health’s Public Education Technology Committee and was a member of the New York City Commission on AIDS and the New York State Governor’s Health Advisory Council. Today, she is the vice president of government and external affairs at OraSure Technologies, Inc.—which manufactures HIV tests, among other things—where she continues her HIV/AIDS advocacy as a corporate communicator and business development facilitator.

How did you feel when you found out that you were going to receive the NMA’s Scroll of Merit?

I was ecstatic. I know the prestige of that award. I also know how hard these 30,000 black doctors work on behalf of their community and their people. I know how committed they are. So when they recognize someone they feel has made a significant change to benefit the public health of the community they serve, I was very humbled [to learn it was me]. I have always been close to the NMA because I thought that from the beginning of this epidemic that they certainly had expertise in the area of health and clinical care and infectious disease that we needed to tap into. They had additional information about their own community that doctors of other ethnic groups did not have. I just wish that the major policymakers in government would rely more on the National Medical Association.

In your 20 years of fighting HIV/AIDS in our community, what were some of the major obstacles you faced in mobilizing African-American leaders?

The chief obstacle was misinformation. The way that information was given to the community in the very beginning of this epidemic created a major barrier for us to get the truth through. We were told in the very early ’80s that this was GRID—gay-related immune deficiency disease—which focused solely on gay white men. That’s where the resources of the Centers for Disease Control and other government entities went. Then, in the late ’80s, we were told that this was a disease that came out of Africa and it had something to do with a green monkey. That’s all we were told, which is why we were beginning to have increasing numbers of men and women who were contracting AIDS. Then there is the general mistrust of the public health system based on a long, 400-year history of slavery in our country. We had to get through all of that by chipping away day after day. I remember in the early days there were times when I did not sleep. I would lay down in the office and get back up and do it again because it was all hands on deck. We’d seek funding and get in touch with key opinion leaders to [have them] bring the message because you have to be humble enough to know that you don’t always have to be the messenger.

As you look back on those 20 years, how satisfied or dissatisfied are you about where we are in the battle against HIV/AIDS in our community?

I’m very dissatisfied about where we are today because my vision has us moving much further and much faster. But I am extremely gratified about what the black leadership has done to lay the groundwork for the Obama administration to adopt the program Act Against AIDS, which was built on the model of the National Black Leadership Commission on AIDS. The mission has been to bring various factions of the African-American leadership together to help solve the issues of the day in our community. It comes out of an old African tradition of the Council of Elders. We were the only organization with that model, and out of it was also born the Latino Commission on AIDS. And at one point there was the Native American Commission on AIDS. APICHA, the Asian & Pacific Islander Coalition on HIV/AIDS, had a model similar to ours. We had a very successful model. We brought a huge amount of resources into the community working with the Congressional Black Caucus and Minority AIDS Initiative. That was from about 1998 to now, and we brought over $2 billion of new money into the community. The Centers for Disease Control and Prevention (CDC) and SAMHSA [Substance Abuse and Mental Health Services Administration] are using some of that money now for some of the programs for African Americans and Latinos. I am very pleased that we helped to lay all of those seeds to get us where we are. But we have a lot of work to do.

What aspect of the fight against HIV/AIDS—testing, treatment or research—do you feel is the biggest priority to address in our community?

First and foremost it is testing; it is the reason why I’m here [at OraSureTechnologies, Inc.]. People have to know their status, period. And we have to find ways to get people who just don’t want to know to check their status. Then if they’re positive, we have to get them into care. In all of the work that I’ve done and all of the things that I’ve seen, I understand the importance of getting tested. We need to know people’s status so we can allocate resources and get more money for care and medicines. People need to know their status so they can get care and protect themselves and their loved ones. The difficulty is that you have to be able to make people submit to care and immediately get treatment.

Given the current problems with stigma and women’s empowerment issues, what influence do you think at-home over-the-counter rapid HIV tests, like the one OraSure has submitted for FDA approval, will have on the AIDS epidemic in the black community?

I can’t wait until that test is approved and on the market. I’m going to buy them by the case and give them to every girlfriend and girl child that I love. I think that the impact will be tremendous on people who just don’t want to go and get tested. I don’t think it’s going to impact on those people in our community who are already going to testing centers to get tested. I think that they will continue to go to community-based organizations and voluntary testing centers. I do think, though, that it’s going to impact on those individuals who have been called the “worried well.” Those are the people who do not feel that they are at risk. I think that we are going to find a lot of positives in that group, like the sister who is 55 years old and has been celibate for 10 years. She feels that there is no way in the world that she could have the virus because she hasn’t had sex in 10 years. I want her to buy a test. Those are the types of people that these test are going to impact. Based on some of our studies, it’s going to be interesting to see people who feel that they have absolutely no risk and have good reason to think that they have no risk, who find out that they are positive. I think that those people’s lives are the ones we are going to save with this home test. These are the people who would otherwise die.

How will these tests link HIV-positive people to the critical care that they need?

We have developed and will utilize a system comparable to the one that the CDC uses to take people into care. There’s a hotline program that will be available 24 hours a day to anybody who buys the test. That program will offer test instructions, provide basic HIV/AIDS information, tell people about confirmatory tests and link them to care. People will be able to input their zip code and see where to go to get test confirmations. They will also be advised to see their doctor, and there’ll be some information for those individuals who test negative. You can’t really get better than that.

What are some of the ways you work to ensure that business and government address the needs of those in our communities who are affected by the virus?

Our product-type line goes beyond HIV. We also have an HCV test—a 20-minute oral fluid test for hepatitis C—going through the FDA approval process. More people are infected with hep C than with HIV in this country. There’s that test, and we have an oral fluid substance abuse test that’s used in the retail industry. We have a business that focuses on forensics and doing various forensics tests. My responsibility is fairly broad, but as the vice president of government and external affairs, I oversee both domestic and international areas. Of course I do legislation, policy, monitoring, creating things that facilitate people’s ability to get tested and get linked to care. I ensure that there’s funding in the environment so people can get into care quickly. To me that isn’t a business responsibility; it’s a moral responsibility. That has everything to do with where I come from and what this company feels is important. You don’t just test people; there’s somebody on the other end of those tests and they are the first priority. Also, I connect the key opinion leaders in science, in funding, in government to discuss, plan and develop initiatives—many of which focus solely on the African-American and Latino communities. But our business is very broad. We also have an international business—we’re in Africa; we’re in Russia; we’re all over the world. It is a huge worldwide responsibility, and I’m learning as I move forward. But certainly my 20 years at NBLCA has prepared me perfectly for this position.

What is your response to the strategy that positions HIV/AIDS as a black disease to solicit more funding and support to fight it?

I now sit at a level where everything has to be seen as a global piece of the puzzle. Globally, it is true that people of color are dominant in this epidemic. But I’ve seen this epidemic change because of a lack of focus on one community over another, resulting in the affected community being unprepared for the onslaught. I don’t think we should set this up in that way. I think that we should definitely let the epidemic drive the resources for those who hold emergency status. But for the long-term planning piece of the puzzle, we need to be more universal in our inclusion. If in 1980 they had not just focused on the gay white community and looked to Africa, where this is a heterosexual epidemic, and said, women are getting infected in Africa there’s a possibility that this can happen in the African-American community here, then they would have seen that many African-American woman here were already infected. I don’t think it’s good to overlook doing universal long-term planning, but I do think it’s important to put emergency resources where the needs are the greatest at the moment.

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