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Changing times: AIDS 20 years later

The epidemic has significantly changed all walks of medicine -- from the drug approval process to the nature of end-of-life care. But despite treatment advances, this anniversary marks only the beginning of the fight against AIDS.

By Victoria Stagg Elliott, amednews staff. July 2, 2001.

AIDS hit the United States in 1981-- first in California and New York; first among gay men, then injection drug users, then hemophiliacs, and then those who had received blood transfusions. And it refused to stay put anywhere it landed -- rolling over the country like a slow-brewing storm and changing everything in its path.

"There's no disease like it," said Arthur Ammann, MD, a pediatric immunologist who saw the first HIV-infected babies in San Francisco in 1981. The 20 years since have been marked by far-reaching implications for both medicine and society.

Timeline of an epidemic
From the case files
Links

The disease has turned patients into activists and quickened the drug approval process for terminal diseases. The extensive research connected with it has spilled over into a greater understanding of cancer and other life-threatening conditions. And palliative care has emerged as an important concern as doctors faced a mounting number of young people destined to die.

It has also led to a heightened level of awareness about certain health risks. The blood supply has become safer, not just from HIV, but from other infections that plagued it. Health care workers and others who come into contact with bodily fluids are now more likely to take precautions. And talking about sex and sexually transmitted disease has entered the medical mainstream.

Early days

In the beginning, doctors didn't know what they were looking at. They stood by as previously healthy patients' immune systems collapsed, and then they watched as those patients died.

"It was very frightening," said Mary Guinan, MD, PhD, a state health officer in Nevada, who worked at the Centers for Disease Control and Prevention from 1978 to 1998.

The impact of AIDS on medicine includes safer blood supply, increased precautionary actions by health care workers and disease activism.

For some physicians, the mysterious ailment came to dominate their practices. They became the first specialists in a disease that didn't yet have a name. Some became involved because they were gay and felt that they had a duty to their communities. Many more were drawn to it because of the thrill of possibly solving what they suspected would be the biggest medical mystery of the decade, or even the century.

"The first years were exciting," said Michael Gottlieb, MD, author of the first report of AIDS-related condition in the medical literature -- the June 5, 1981, case report of five gay men with pneumocystis pneumonia published in the CDC's Morbidity and Mortality Weekly Report. "I liked the patients, and I liked the mystery," he said.

But the price was high, personally and professionally. Many of the current AIDS specialists were just finishing their residencies when AIDS broke onto the scene. As young physicians, they worried about what it would do to their careers. Sometimes they seemed to suffer a stigma by association. Other physicians wouldn't return their phone calls for referrals. Hospital administrations quietly tried to discourage them from taking too many AIDS patients because it affected their facilities' bottom lines.

"You'll never get anybody at an administrative level to admit this," said Dr. Gottlieb. "But there was worry that if the public was aware that a hospital was an AIDS center, [other patients] might choose to get their heart or liver transplant or orthopedic procedures that are high-profit procedures somewhere else."

But the personal toll of taking care of AIDS patients may have been even greater.

Jerry Cade, MD, the director of the HIV program at the University Medical Center of Southern Nevada in Las Vegas, worked with AIDS patients since the disease first arrived in his state. The focus of his practice for many years was not to cure patients, but to keep them alive for their next birthday. He attended one patient's 22nd birthday party. The man never had a 23rd, and Dr. Cade took two days off after his death. Another week, when he signed six death certificates, he nearly quit.

"It was totally overwhelming," said Dr. Cade.

Silver lining

Although the situation, particularly in the 1980s, was bleak, AIDS has had a significant impact on medical practice that reaches far beyond the individual doctors who treated AIDS patients. There has been an increase in the precautions taken by health care workers and others involved in handling bodily fluids.

"A lot of the things we do for HIV disease, we should have been doing a long time: gloving while drawing blood, double-gloving during surgery," said Dr. Cade. "What we've probably done is also protected ourselves from hepatitis B and C. It made us do that better."

And although the blood banking industry has long been criticized for reacting slowly to the threat of HIV transmitted via transfusion, the blood supply is now safer than ever. Before AIDS, it was tainted with hepatitis and other infectious agents. The industry has since developed a framework that enables it to react more quickly to emerging threats such as Creutzfeldt-Jakob disease.

"The blood bank is now in a defensive position," said Dr. Ammann. "When these questions come up, there's less denial that there's a problem."

Rock Hudson

Denial. It was a reaction that characterized many aspects of the epidemic's early days. It took the death of a celebrity -- Rock Hudson -- to shift the disease from the fringe to the forefront.

"I took care of Rock for several years, and I never appreciated what a difference his disclosure would make," said Dr. Gottlieb, who was the movie star's doctor. "Elizabeth Taylor got involved, and it became a lot easier to raise funds."

And this phenomenon has had widespread consequences. Fundraising led to research investment, which in turn provided insights that have spilled over to other diseases.

"The overall attention to HIV has led to other scientific breakthroughs," said James Curran, MD, MPH, who worked with Dr. Guinan at the CDC and is now dean of the Rollins School of Public Health at Emory University in Atlanta.

Moreover, the desperation of the early days changed the way patients viewed their circumstances. Disease activism, almost unheard of before AIDS patients spoke up, is now commonplace among a whole range of illnesses, including breast cancer.

And it has had repercussions from the clinic to federal drug policy. In the clinic, the doctor-patient relationship changed as patients demanded a greater voice in their treatment choices and decisions. The tide of AIDS also led physicians to be more involved in their patients' lives.

Robert C. Scott, MD, an internist with a solo practice in Oakland, Calif., founded the AIDS Project of the East Bay because he had spent so much time cleaning and cooking for his patients in an attempt to take care of their other urgent needs.

End-of-life care changed, too. What had previously been an emphasis on maintaining life shifted to give greater weight to patient wishes and comfort.

"Before, a physician did everything they could to avoid being sued," said Gerald Friedland, MD, director of the AIDS program at Yale University in New Haven, Conn. He worked with some of the first injection drug users stricken with AIDS. "Now there's more attention to palliative care."

Patients also became more active participants in the research and drug development -- again waging challenges and ultimately altering a system considered arcane, out-of-reach and bureaucratic. Rather than just being study subjects, they now help design clinical trials.

The Food and Drug Administration, long-criticized for taking too much time to approve drugs for terminally ill AIDS patients, changed its rules. Patients even became a part of the process, joining FDA advisory committees rather than just speaking at the hearings. Among the results: Drugs can now be approved based on surrogate markers rather than endpoints. The balance between risk and benefit has been reconsidered.

"It all boiled down to expanded access," said Debra Birnkrant, MD, acting director of the FDA's division of antiviral drug products. "The AIDS epidemic led to new regulations for patients with serious and life-threatening diseases to expedite drug development and to make new therapies available sooner."

Drug companies were also not immune from activists' ire. And they, too, have changed in response.

Dr. Ammann remembers his move from academic medicine to private-sector drug development in the early 1990s. While working for the drug company Genentech Inc., AIDS activists protested outside his office. They threatened to douse him with Elizabeth Taylor perfume if the company did not start developing AIDS drugs faster.

"The community was always asking: 'Why does it have to be done this way?' 'Why aren't there more drugs?' 'Why isn't there more research?' " said Dr. Ammann. "That really drastically changed the way research priorities were established. Drug development will never be the same."

AIDS also became part of the movement to change America's health system. "HIV disease is a parable for a lot of ills in society and the health care system," said Dr. Cade. "You can't fix one part of the health care system without fixing everything. We knew this, but HIV disease made it really dramatic. You had a lot of 20-year-olds who had no insurance and no savings. And they needed health care."

A different world

Today, the health system still has its flaws, but many of the AIDS wards -- once filled to capacity with the dying -- are gone. With the advent of highly active antiretroviral therapy in 1995, AIDS rapidly shifted from an acute to a chronic condition, and the lives of doctors and patients changed.

"That was the coolest year," said Dr. Cade. "All of sudden all these people who we thought had a year or two, they're still alive. I don't sign death certificates very often. It's a different world."

But experts warn it's not all good news. AIDS care has become more complex because of the side effects from the drugs, and the diseases that naturally come with aging. Some AIDS wards also remain, taking care of those lowest on the socioeconomic ladder. And the disease is still spreading, albeit more slowly, at least in the United States.

"We know so much about this virus HIV, but we don't know how to stop it," said Dr. Gottlieb, who is now an AIDS specialist with Synergy Hematology-Oncology Associates in Los Angeles.

Next step, global action

In many respects, AIDS/HIV has been wrested into control in the United States, despite recent reports from the CDC that national infection rates may again be picking up a slight degree of momentum.

Still, many AIDS physicians are now turning their attention to the rest of the world, warning that this 20th anniversary is hardly the end of the disease, but just the beginning. The worst is yet to come, and it will be planetwide.

"We're the richest country in the world," said Myron Cohen, MD, chief of infectious diseases at the University of North Carolina, Chapel Hill. "Our obligations extend beyond our borders. We certainly see ourselves as obligated for all kinds of political and military intrigue. How can we think we're not responsible for public health on a more global basis?"

And all hope for a vaccine as the only true way to control HIV, although that may be decades away.

"For the prevention of transmission, the vaccine will be the ticket," said Dr. Gottlieb.

ADDITIONAL INFORMATION:

Timeline of an epidemic

June 5, 1981: The Morbidity and Mortality Weekly Report publishes a report of five gay men, all previously healthy, with pneumocystis pneumonia.

1982: Centers for Disease Control and Prevention officially coins the term acquired immunodeficiency syndrome.

1984: The cause of AIDS is identified as a retrovirus: human immunodeficiency virus.

1985: Food and Drug Administration approves first blood test to screen for HIV. Blood banks begin screening the blood supply. Rock Hudson dies of AIDS-related complications.

March 19, 1987: FDA approves zidovudine, AZT, the first antiretroviral for treatment of the disease.

1988: National Institutes of Health establishes Office of AIDS Research.

1990: Ryan White, a hemophiliac who became well-known in the effort to raise awareness after being diagnosed with AIDS contracted from blood products, dies at the age of 18. He successfully sued his school district for the right to attend classes and was the namesake for landmark federal legislation.

1991: Magic Johnson announces that he is HIV-positive and retires from basketball.

1992: AIDS becomes the No. 1 cause of death for men 25-44.

1993: CDC expands the case definition of AIDS to include conditions specific to women and those more common among injection drug users.

1994: NIH issues guidelines requiring applicants for grants to address inclusion of women and minorities in clinical research.

Dec. 6, 1995: FDA approves first protease inhibitor, saquinavir. Highly active antiretroviral therapy (HAART) is born.

1997: AIDS-related deaths in the United States. decline by more than 40%.

1998: First large-scale human trials for an HIV vaccine begin. First reports of treatment failure and side effects from HAART.

2000: United Nations Program on HIV/AIDS, World Health Organization and other groups announce a global initiative to negotiate reduced prices for AIDS drugs in developing countries.

2001: More than 400,000 Americans have died from AIDS-related complications since 1981. Estimates indicate that between 800,000 and 900,000 people are currently living with AIDS in the United States.

Source: Kaiser Foundation, Centers for Disease Control and Prevention, UNAIDS

From the case files

Patient profile: 1981

Who: White gay man and/or injection drug user
Presentation: Very sick with numerous opportunistic infections
Treatment: Antibiotics, comfort
Life expectancy: Weeks or months

Patient profile: 2001

Who: More likely to be a person of color and/or female
Presentation: Typically asymptomatic, although those of lower socioeconomic groups still present initially when they are very ill
Treatment: Highly Active Antiretroviral Therapy (HAART)
Life expectancy: Decades, although as short as five years if the person doesn't start therapy until they are very sick