Awards of Courage
Honoring with Pride 2002 Honoree
From 1979 through 1994, Tim Westmoreland served as staff to the Subcommittee on Health and the Environment of the U.S. House of Representatives, under the chairmanship of Congressman Henry Waxman (D-CA). During this time, Mr. Westmoreland staffed more than three dozen congressional hearings on HIV/AIDS, including hearings on biomedical research, prevention, diagnosis and treatment, and health care finance. He served as principal staff for the House of Representatives on the AIDS Prevention Act, the Ryan White CARE Act, and the NIH Revitalization Act.
From 1995 to 1999, Mr. Westmoreland taught at Georgetown University Law Center. During this time, he also served as counsel to the Koop-Kessler Advisory Committee on Tobacco Policy and Public Health, as a lobbyist for the Elizabeth Glaser Pediatric AIDS Foundation, and as an advisor to the Henry J. Kaiser Family Foundation.
In 1999, Mr. Westmoreland was appointed the director of the federal Medicaid program, where he issued regulations on patients’ rights within Medicaid managed care organizations and on expanded eligibility for Medicaid. In this position, he also provided guidance on continuing Medicaid coverage for families who are no longer eligible for welfare and on the provision of community-based health care to people with disabilities.
Mr. Westmoreland now teaches law and public policy at Georgetown University. He was recently awarded the Investigator in Health Policy Research Fellowship by the Robert Wood Johnson Foundation for his research on how the federal budget process affects health policymaking.
Mr. Westmoreland grew up in the Blue Ridge Mountains of North Carolina. He earned a B.A. from Duke University and a J.D. from Yale Law School. He now lives in Maryland with his partner of 23 years, Nick Olcott, a theater and opera director.
Can you talk about how you first got into the field of health policy, and specifically, AIDS advocacy?
I grew up in a poor part of rural North Carolina, where my father was a minister. After college, I decided to go to law school, and in law school I was interested in law and health care. When I came out of law school in 1979, it would have been very difficult to imagine practicing law because I'd never taken the basics like tax or property law. But I was actually fairly well informed on law and medicine at the time that it was becoming a real field. (President Carter was proposing hospital cost containment and initiating changes in health planning and national health insurance).
By the time I'd finished my third year of law school, health care law was a real issue, and people were calling me and saying, "Aren't you the guy who knows something about health care law?" And it was all because the government had started to see health care as a utility that people needed and that needed regulation. So I came to Washington looking for a "good guy" health care job. [Congressman Henry] Waxman was the new Chairman assembling a new staff at the time, and he took a gamble hiring someone straight out of school. And I stayed at my first job for fifteen years, at the same desk.
How has the epidemic affected or changed you personally? How has the epidemic affected your work as a health advocate?
On a personal and emotional level, a lot of my friends have died. And now a lot of my friends are HIV-infected, taking a lot of medications, and always worrying about their health care. AIDS has also dramatized the gap between the middle class and the poor in this country. Access to health care really is a question of life or death. And disposable income is key; cash makes a difference between people living or dying. You don't see this quite so starkly in America all that often, but the AIDS epidemic brought home very clearly that access to health insurance, and access to disposable income, are life-or-death issues.
How has the epidemic changed the gay and lesbian community, either for the better or the worse?
With the AIDS epidemic, both the nation in general and the gay and lesbian community in particular have had this roller-coaster, up and down. We went from complacency to hysteria, and we have never been able to figure out the middle spectrum of urgency. During the 80s, gays and lesbians felt marginalized, even under attack. But then the community became stronger, organizing themselves into both service delivery and political advocacy groups. Unfortunately, with the advent of antiretroviral treatments, I think we've gone back to complacency again. The urgency has gone out of the movement and people have assimilated into their own comfortable places. The common thread of gay men feeling under attack has almost disappeared. Now many affluent gay men who would have been concerned about the epidemic ten years ago are simply asserting their rights to be part of country clubs, rather than asserting the need for society to deliver health care services to people who are sick.
How involved has the gay community been in shaping AIDS policy?
In the early days of the epidemic, the gay community had to be involved because nobody else was urging a public health policy. Some opponents argued that it was a “gay response,” but the gay community and the public health community have almost always said the same things for 20 years. The gay community has given voice and gotten attention for a message that the public health professionals couldn't always get out. It’s important that people not think that public health and gay issues diverge, because they haven't. The issues are the same—being candid with people about the epidemic, being candid about how drug use and sex can spread, or not spread, HIV. These have been the messages for the public health community and the gay community. And the gay community has often been the more effective spokesperson in delivering the message.
As director of the federal Medicaid program, what policy changes did you implement in the area of HIV/AIDS care?
Trying to get more people enrolled and participating in Medicaid is itself an AIDS issue for me because it's about getting all people access to health insurance. There's a crazy catch-22 in the federal Medicaid laws. Medicaid is not available to all people who are poor. It's available to people who are poor and something else, [like] poor and over 65, poor and head of a family with dependent children, or poor and totally disabled. If you have an AIDS diagnosis, you are considered totally disabled, and if you are poor, you can get Medicaid. But if you have HIV infection [and have not progressed to AIDS], you're not considered disabled. So if you're not "disabled," or over 65, or you don't have children, you're not eligible for Medicaid no matter how poor you are and no matter how much you need treatment. In the early days of the epidemic, that didn't make quite so much of a difference because we didn't have any medications that were recommended for early treatment. But now we have medications that will postpone or prevent disability. Unfortunately though, the only people who will qualify for Medicaid are people who are totally disabled.
For ten years now, I have been trying to get Medicaid expanded to include people in early stages of HIV disease, who could postpone or forestall their disability if they could get treatment paid for by Medicaid. I started working on it with AIDS, then I worked on it with breast and cervical cancer. There's some movement now to do it for hepatitis and mental illness as well. But it's expensive, and members of Congress, and to some extent governors, don't want to expand Medicaid. The distant second-best alternative is to let states experiment with the program. I worked with the states of Maine and Massachusetts, and the District of Columbia, which were given waivers to allow them to expand the Medicaid program to people with HIV who are also poor. These model programs may demonstrate that it costs no more to the federal government to provide Medicaid coverage to low-income people with HIV, because the Medicaid coverage means postponing many hospitalizations and illnesses.
As someone who has been actively involved in helping to guide and shape AIDS policy, how do you think HIV/AIDS policy has changed over the years and what is its future direction?
I need to break it down into three aspects: research policy, prevention policy, and health care finance policy. AIDS research policy was the first issue to emerge in the early days of the epidemic, when everybody just wanted to study HIV and find out what was going on. Though it's hard to imagine now, that was a pretty radical proposition back then. President Reagan once threatened to veto an appropriations bill because it had “too much” money in it for AIDS research. But the issue has become mainstream now, and everybody supports the need for AIDS research dollars. Every now and then funding for AIDS research is attacked by people who are frustrated by the limited amount of federal dollars in other areas. But these days, with NIH funding going up dramatically, it's not the kind of lightning rod issue that it was in 1982.
Prevention, I'd have to say, has not made much progress. We spent a lot of time in the first ten years of the epidemic in political fighting about how candid people wanted to be about drugs and sex—first with the general public and then especially with young people. And now we seem to be back at the beginning. I've just come out of a week of debate in Congress over abstinence-only sex education that could have been a replay from 1983, when people were saying, "Don't talk about condoms. Don't tell people about contraception and family planning. Don't be candid about safe sex."
In terms of AIDS health care finance, we've made some progress, but we're a long way from where we should be. The coverage of AIDS care by both private insurance and Medicaid and Medicare has improved. But we can't take it for granted, and it hasn't achieved public acceptance in the way that AIDS research funding has.
What are some of the challenges in AIDS public policy, particularly with regards to health care?
I think the major problem is summoning the urgency to continue to address problems when there is a temporizing measure like antiretroviral therapy. The prevention and early diagnosis message has gotten out to relatively well-educated people, but not to everybody. The challenge is to respond to an epidemic that is affecting people who haven't gotten the prevention messages because they're not well-educated, are young, or have lives that are otherwise in disarray. And the disease is increasingly affecting people who don't have access to the health care services they need. The urgency has gone out of the AIDS response by both the government and the private sector like air out of a balloon.
Looking to the future, what would you ask of the gay and lesbian community with regard to the fight against AIDS? What kind of responsibilities does the community have in this battle?
I'd say the responsibility in the gay community is that the response to AIDS can't just be "every man for himself." While middle-class and affluent gay men and lesbians feel like their own personal health isn't in jeopardy now, they still have to look around and see how thoroughly broken the American health care system is. Many people have no access to services or care or even research. The AIDS epidemic taught us what it is like for society not to care about what happens to you, and we should be able to generalize and transfer this knowledge to other people and other groups that society simply doesn't care about. That's the obligation we have. The people who are around now lived through the epidemic and have benefitted from the hard lessons learned. We should be helping others do the same.