Learning To Live With Aids Virus New Drugs Are Changing Patients' Outlook

Posted: May 09, 1990

At least six times a day, David A. is reminded that he is infected with a deadly virus. Each time he swallows a blue-and-white pill containing AZT, the

drug that has been keeping his infection dormant, David thinks about AIDS.

But he thinks about this disease in a way that few would have thought realistic even a few months ago.

"This is like diabetes," said David, 28, who asked that his last name not be used. "I've been taking AZT for two years, and I have no symptoms. I don't feel like I'm dying. I did, when I first found out I was infected. But now, there are so many new drugs being developed. There's research into a vaccine. I feel super optimistic.

"AIDS infection is serious. But it's not as serious as it used to be."


Rob Roy MacGregor, chief of infectious diseases at the University of Pennsylvania medical school, shares David's view of AIDS as a chronic disease.

"I tell some patients who are diagnosed as infected and who have high (white blood cell) counts that they may never get AIDS. We hope the race will be won by science to freeze the virus" in its tracks.

"Most patients feel very threatened at first when they learn they're infected. But when you start going to a doctor once a month, month after month, you may begin to accept the fact that this is a chronic disease," MacGregor said.

Living with an AIDS infection and viewing it as a chronic condition - as David A. and MacGregor do - is possible today because of the development of drugs like AZT that can keep the virus in check for several years.

Today, significant drug research focuses on controlling the virus before it relentlessly destroys the body's immune system and on controlling the other infections that beset AIDS patients.

Several Center City hospitals, including Pennsylvania, Jefferson, Graduate and the University of Pennsylvania, are enrolling patients in national drug trials. And Dr. John Turner at Graduate Hospital is about to begin testing a vaccine against the AIDS virus that was developed by Dr. Jonas Salk, the polio vaccine pioneer.

These drug trials, which are open to additional participants, include:

* A study at Pennsylvania Hospital of a new anti-fungal drug called Schering 39304. This drug will be given to 15 to 20 people with AIDS to see if it prevents a relapse of crytococchal meningitis, one of the opportunistic infections that strike those with AIDS.

* A study at Jefferson of a drug, called erythropoietin, that stimulates red blood cell production to counteract the anemia caused by AZT. This study will accept up to 64 patients on AZT who have had anemia and lowered white blood cell counts.

* A study at Graduate of 24 patients comparing an anti-viral drug called ddC with AZT in patients with AIDS or advanced AIDS-related complex (ARC).

* A study at Penn comparing DDI, an anti-viral drug, with AZT. This drug will be given to 30 patients with AIDS-related infections who have been taking


Because of the hope implicit in trials like these that are going on nationwide, physicians and patients alike now see AIDS - under some circumstances - as a long-term disease rather than an acute illness that leaps

from one critical episode to another, quickly leading to death.

One way to evaluate an infected person's condition is to measure his or her T4 white blood cells, which help the body combat infections. A normal value ranges from 800 to 1,200 or more T4 cells per cubic millimeter of blood.

Left unchecked, the AIDS virus gradually destroys these vital T-cells. But certain drugs can slow this destruction.

"If you're diagnosed as infected and your T-cell counts are 500 or better, your life expectancy may be 50 years," MacGregor said.

For people who have progressed to full-blown AIDS, life-prolonging drugs have made an impact, although a less dramatic one. Because of drug therapies like aerosol pentamidine, which kills certain germs in the lungs, the median survival time for patients diagnosed with pneumocystis carinii pneumonia (PCP), the most common life-threatening infection seen in AIDS patients, has doubled from about 11 months in the early 1980s to 24 months.

Another recent national study has found that white patients now live nearly three years after progressing to full-blown AIDS, although black patients' life expectancy is 33 weeks after diagnosis. This discrepancy is blamed on blacks' having less access to medically sophisticated preventive care.

Some AIDS activists worry that depicting AIDS infection as a chronic, manageable disease is misleading, particularly because most people find out they're infected well after the virus has begun causing its destruction.

"All of a sudden, we've made a move to de-emphasize AIDS as a crisis, and I think that's wishful thinking," said Fran Stoffa, director of the Philadelphia AIDS Task Force, a non-profit organization that helps people with AIDS and provides testing and counseling services.

"Our people still die. They're living longer, but they still die. In the best of circumstances, they live 2.9 years after diagnosis of AIDS . . .

"Maybe we're all 'chronic' because we're all going to die from something. But you and I don't measure the rest of our life in 2.9 years.

"Sure, we can tell people: The sooner you get tested, the better. The earlier the intervention, the better. The earlier you get on AZT, the better. The healthier you are when you get AIDS, the better. But to describe this as a manageable, chronic condition flies in face of AIDS as we know it.

"I don't have any ex-AIDS patients. People with AIDS still die."

In Philadelphia, an estimated 40,000 people are infected with the AIDS virus, and most don't know it. There are 600 people with full-blown AIDS living here. According to the most recent figures from the city health department, 1,121 people have died since 1981.

When David was diagnosed as infected in November 1987, his T-cell count was a high 1,300. Still, he thought, "This is the end."

Rather than wait helplessly for the relentless assault of fungal infections and pneumonia, he decided to take AZT, even though at that time it was approved for use only in those showing signs of infections. And David, a former health-care professional, knew AZT could have toxic side-effects.

"I thought it would be worth taking the risk," he said. "Without AZT, I was afraid I would continue to get sicker. I'd taken care of several people who had AIDS and that made my situation more frightening. That cemented my decision to take AZT. I felt I had nothing to lose."

David wasn't the only person making the bold and desperate decision to take

AZT before symptoms developed. Across the country, other healthy-looking but infected people - almost all gay men - were independently reaching for the same lifeline.

When these men's physicians saw that their T-cell counts remained high and they remained healthy, news spread quickly. In August 1989, the federal goverment released results of a two-year study that confirmed this beneficial use of AZT. Subsequently, the Food and Drug Administration approved this use.

Today, David shows no signs of the ravages of AIDS. He is tall and broad- chested. His handshake is firm. His smile is casual and frequent.

He takes 200 milligrams of AZT every four hours, which means setting his alarm to wake him in the middle of the night to take a pill. But he said this inconvenience is outweighed by one fact: his T-cell count is still 1,300.

While David's dosage of 1,200 milligrams daily was recommended as recently as a year ago, many physicians today advise their patients to take 600 milligrams or less to avoid side-effects, such as severe anemia. But David said he is afraid to take less. So far, this amount has worked for him, and he is afraid to tinker with his successful regimen.

David sought AZT on his own as a means of survival, but other infected people ask their doctors about continuing drug studies. Just as David participated in an unorganized trial use of AZT, other AIDS-infected people are signing up for clinical drug trials.

"When we talk to our patients about a study that's coming up, 75 percent are interested in participating," said Dr. Ian Frank, director of Penn's 250- patient Immunodeficiency Clinic for patients infected with the AIDS virus.

"Some are scientifically-minded, while others have little education. They all want to do something about their condition."

While drug therapies can postpone illness and suffering, vaccines hold out the tantalizing hope of a cure. Some 40 different vaccines are being studied in laboratories and two others are being tested in humans, yet it's the Salk that has attracted public attention.

It uses inactivated AIDS-virus particles that are injected into infected people in an attempt to boost their immune systems. It is designed to work after a person has been infected, just as the rabies vaccine is given after exposure.

Beginning this spring, clinical trials are being conducted at nine medical sites nationwide, including Turner's group of a dozen AIDS-infected patients at Graduate Hospital.

At first, this trial is limited to 100 participants whose T-cell counts have never been less than 600, who are free of present or prior AIDS symptoms, and who have not taken AZT. Over the next three years, the number of participants may be increased to 650 nationwide.

The Salk AIDS vaccine is a product of Immunization Products Ltd., a joint venture of Immune Response Corp., a biotechnology company in San Diego that was co-founded by Salk, and Rorer Pharmaceuticals in Horsham.

The company isn't answering questions about the vaccine, but does have a toll-free number - 1-800-422-5448 - that describes the criteria necessary for inclusion in the vaccine trials.

There are some who doubt the Salk vaccine is the answer.

"Salk is a charismatic, mesmerizing person and a good scientist," said Penn's MacGregor. "But I think he has taken a paucity of information and run a long way with it.

"I wouldn't think, 'If I get into this trial, terrific, I'm saved.' I think the likelihood of that is small. But if I could take it and did need it, I'd probably take it."

Until a vaccine is successfully developed - and some wonder if it ever will be - people infected with the AIDS virus will rely on drug therapies administered through their physicians.

There is evidence that the health-care system is increasingly viewing some stages of AIDS-virus infections as a chronic disease. For example, Penn's Ian Frank said he is in touch with nearly 50 Philadelphia physicians who care for AIDS-infected patients - a significant increase over the handful who handled most AIDS cases just a few years ago.

To Frank, this increase means physicians are starting to view AIDS as a disease that they can monitor rather than as an acute condition that requires specialized knowledge to treat.

Even the city's district health centers now offer care to AIDS-infected people. About 80 people are routinely receiving AZT and other drugs, and are given blood tests to monitor T-cell counts. Each month, at least 20 new AIDS- infected people are expected to seek treatment, said assistant health commissioner Mike Lucas.

As the AIDS infection becomes accepted as a chronic condition, this view could have unhappy ramifications for drug trials, MacGregor said. Right now, people are anxious to get into the trials.

"If AIDS is perceived as a chronic disease, will people be more discriminating about getting into drug trials?" MacGregor wondered. "I don't see evidence of that yet, but it could happen."

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