July 1996

Thoughts about Protease Inhibitors

“We must work for justice to eliminate HIV”

by Warren W. Buckingham III

Like many people living with HIV, and like people who love people with HIV or AIDS, I have an alternating and recurring sequence of dreams and nightmares. I dream that an end to AIDS comes in my lifetime. Not just for my sake, but for the millions who won’t die from this virus. But the dream is usually chased by a nightmare that our society decides AIDS has been conquered long before it actually is.

My dream/nightmare sequence has been in overdrive since the International AIDS Conference in Vancouver this summer and all the hope and excitement engendered there by the news about /protease inhibitors/. This new class of antiviral medications seems to have real potential to interrupt viral reproduction and bring the level of circulating virus particles in the bloodstream down to imperceptible levels.

While this news has positive personal and public health implications, it also raises painful and perhaps unresolvable moral questions.

For both infected individuals and society, the benefits may be tremendous: drastically reduced disability and death from HIV, reduced (perhaps even eliminated?) infectivity of those who have the virus, and increased productive years among many in a generation that was expected to be decimated by HIV. Restoration of hope for families and communities that never dreamed they’d hope again.

But in my darkest moments I worry that no one is looking beyond this rosy picture at the profound challenges that protease inhibitors present to our nation and our world.

These are very expensive medications. If taken in what is currently thought to be the proper combination, the annual bill for keeping HIV undetectable may be as high as $15,000 per person. In our rich nation, state and federal treasuries are at least several hundred million dollars short of what will be needed to make protease inhibitors available to all who could benefit from them. Private insurance, for those who have it, frequently has annual or lifetime cost caps that could be quickly exceeded.

Protease inhibitors are not an on again, off again venture. Once started, they need to be taken without interruption for life. Because they don’t — not yet, anyway — seem capable of eliminating all HIV from the system, stopping them can lead to rapid development of drug resistant virus. If our federal programs or private insurance or charitable efforts don’t have the staying power to make a lifetime commitment to someone starting protease inhibitors, we run the very real risk of jeopardizing — not improving — their health. By increasing the population with new, drug resistant strains of the virus, we raise serious public health concerns because we know from experience that all those folks aren’t going to manage to abstain from behaviors that put others at risk of infection.

These aren’t easy drugs to take. Some of them have pretty wicked side effects. All of them have to be taken like clockwork in precise dosages. Many of the people now being infected with HIV are those who are least well equipped to manage a complicated drug regimen. They are functionally illiterate. They have sick children to think of first. They have to figure out where their next meal — not their next pill — is coming from.

The urban poor, the homeless, adolescents, and women are at disproportionate risk for HIV infection everywhere in the world. If they are also people of color, the risk is multiplied. And that’s where painful and provocative moral questions around justice and racism have to be confronted before we dare celebrate the advent of a cure or the end of AIDS.

If a state’s AIDS drug assistance program can only help a hundred — or even a thousand — people, where and how do you draw the line? Do you help only the poorest of the poor? Do you help only those who seem able to manage and benefit from the drug? Do you exclude all those with insurance, even when someone’s policy has an annual cap of $1,000 on drugs?

What is our responsibility to our brothers and sisters in the developing world, where “developing” is now a perversely better descriptor of the state of their AIDS epidemics than of their economic or industrial infrastructures? Does this rising tide of hopeful news lift only the boats of those who are white, wealthy, and North American?

As someone who is usually accused of being Pollyanna’s long-lost twin, I wish I could explain this dark reaction I’m having to the “good news” of protease inhibitors. As a public official, some of my concern stems from the fact that I see and hear far too few people wrestling with the ethical and moral dilemmas they present.

As a person of faith, I know I don’t know the answers to those questions. But I do know that God expects me to ask them, to pray about them, and to keep them in front of others. People of faith must be actively and energetically and prayerfully involved in the public debate about how we determine what this “good news” means. As Episcopalians, we must seek to understand what the Good News tells us about both the promise and the pitfalls of protease inhibitors.

But don’t think you can’t act until we have all the answers. Learn everything you can about this subject. Preach about it from your pulpits, and talk about it in your workplaces and schools. Advocate for adequate funding. Take part in or develop programs that educate and support folks who need assistance in keeping up with their medications.

Above all else, work for Martin Luther King’s dream. Work ceaselessly for justice and the end of racism. They are and always will be the most powerfully positive steps we can take — as individuals and as a society — to eliminate HIV.

Warren “Buck ” Buckingham is a long-term survivor of AIDS and the deputy director of the Division of HIV Services in the US Public Health Service, which administers $700 million in federal Ryan White CARE Act funding to programs across the nation. He is a member of the Commission on AIDS of the Executive Council of the Episcopal Church. The opinions expressed here are his own.