Distributed December 1995
Copyright ©1995 by Kenneth H. Mayer
I first saw men with AIDS in 1981 at Boston's Fenway Community Health Center during my training when I set up a clinic for hard-to-treat sexually transmitted infections. I first cared for women with AIDS in 1983 when I started working in Rhode Island. I have subsequently lost count of how many patients and friends have died because of the epidemic.
So, after 12 years of Reagan-Bush malign neglect and three years into your term of office, the convening of the White House Summit on AIDS on Dec. 6, after more than 300,000 Americans have died from AIDS and close to one million are HIV-infected, was laudable but overdue. Your words were on target and much appreciated. Please keep those messages coming.
What do I hope you will do, in light of the truculent, reactionary Congress and public apathy? First and foremost, you have got to continue to use the bully pulpit and eschew timidity. Condoms work when skill-building training is provided; masturbation is safer than penetrative sex; long-term abstinence as a blanket solution doesn't work. Your previous surgeon general, Dr. Elders, said as much and was canned, to the chagrin of the public health community. You have got to wade into the discussion, review the increasing amount of data about prevention education and use the prominence of your position to become a change agent to promote safer sex. Culturally specific messages and frequent reinforcement are critical elements to affect change, and the prestige of the Oval Office will help to buttress the efforts of grass-roots workers in the community. Too many of us are burning out as we see the prevalence of HIV mount among urban adolescents, or when middle-aged women turn up with AIDS, but were unaware of their risk because of dishonesty of their "monogamous" male partners.
If you are willing to be the spearhead of a reinvigorated national public health campaign about AIDS, then you need to empower the extremely competent public health leadership you have assembled and take bold initiatives. Unfortunately, some prevention programs, such as those which have demonstrated the efficacy of syringe exchange in decreasing HIV spread among drug users and which have been lauded by the National Academy of Sciences, have been undervalued by Health and Human Services.
Enhanced prevention efforts cannot supplant the urgency to optimize the medical care of people who are already HIV-infected. The clock continues to tick for hundreds of thousands of Americans. Although there are many promising new treatments such as the protease inhibitors and 3TC, clinicians know that none of the anti-HIV drugs available are "magic bullets" in and of themselves, and are unsure which combinations are best to use. Thus, an unprecedented level of cooperation between competing pharmaceutical firms and government is needed. The assignment of Vice President Gore to convene a blue-ribbon panel will enhance the necessary federally-brokered cooperation between the government, academia and industry.
Now more than ever, a strong FDA is needed to ride herd on corporate America to keep up regulatory pressures so that studies are funded to figure out the "real world" uses of specific anti-HIV compounds, even after the drugs are approved for limited indications. Currently, once a drug is approved for one use, clinicians can prescribe it to any patient for any reason -- as long as the patient has the ability to pay. Meanwhile, the patients' insurers (if they have insurance) may balk if the drug is being used for an "unproven, unapproved" indication. Mr. President, we need you to cut these Gordian knots.
The biggest knot in AIDS care, as in so many aspects of life, unfortunately is money. You have helped to secure ongoing funding for the Ryan White AIDS CARES Act and the NIH AIDS research budget, both laudable programs. But most of the U.S. AIDS clinical care dollars are in Medicare/Medicaid costs, which the Republicans are trying to cut. We hope you will continue to stand firm in resisting their cuts. The NIH is only one part of the national AIDS research program. The Center for Disease Control plays a vital role in prevention research and services. Mr. President, you indicated that your senior HHS leadership will come back to you within the next few months with a comprehensive plan that reviews current federal AIDS research efforts. We hope the review will lead to better program integration and prioritization of limited federal resources, and not result in an unread or unimplemented report.
Without your sustained leadership, I expect to continue to diagnose increasing numbers of teenagers, women, gay and straight men, with debilitating illnesses well into the 21st century. The summit was a great boost, but your efforts need to remain sustained.