New Drugs Prescribe A Fresh Hope Still No Cure For Aids; Victims Living Longer
These pills are Lucky Charms, a rainbow of colors and a geometry book full of shapes. They are white diamonds and orange capsules, blue cylinders with white stripes.
They try to foil the human-immunodeficiency virus at almost every step of its reproductive process. They are a life preserver and a straitjacket.
Anthony Porter swallows 40 a day in a strict regimen, just to stay alive. The Spokane man has had full-blown AIDS for more than three years, ever since he flirted with dying from pneumonia and wasted to 115 pounds.
First he started a nutritional program. Then he started the pills, which he says cost from $8,000 to $12,000 a month.
“I really didn’t feel like I had a future before, or much to look forward to,” said Porter, 36, who now weighs 155 pounds. “I was supposed to have died three years ago, and I’m here now.”
Porter is one of many AIDS sufferers taking a multidrug cocktail that includes two standby AIDS drugs like AZT and 3TC punched up with a protease inhibitor that has been lauded worldwide.
This is no cure for AIDS, and some people can’t take the drugs at all. In some longtime users, the cocktail’s effect starts wearing off.
But the results are impressive. AIDS deaths are decreasing nationally and locally. Patients’ quality of life is improving. There is a glimmer of hope.
Deaths from AIDS dropped significantly in the United States last year for the first time since the epidemic hit. In the first half of 1996, 13 percent fewer people died than in the first half of 1995.
In Washington, the numbers are still being tallied. But initial comparisons by the state Department of Health show a drop in deaths of 20-30 percent when comparing the first nine months of 1995 and 1996.
In Spokane County, deaths dropped about 37 percent from the first nine months of 1995 to the same period in 1996. The numbers are small - 30 in 1995 and 19 in 1996 - but noticeable, at least to caregivers and patients.
“These drugs have been phenomenal, just phenomenal,” said Ann Stuyvesant, direct services coordinator of the Spokane AIDS Network. “People are talking about going back to work - people we thought would be dead right now.”
For the first time, the network is talking to the Washington Department of Vocational Rehabilitation about connecting patients with job counselors.
The network saw five AIDS deaths in 1996, compared to 11 in 1995 and 20 in 1994.
Hospice of Spokane, which usually cares for one to three people dying from AIDS at any given time, hasn’t had an AIDS patient in six months.
The Visiting Nurses Association, which provides home health care, is caring for fewer AIDS patients than in the past.
The Spokane Regional Health District, People of Color Against AIDS Network and North Idaho Hospice are all helping clients make long-term plans.
“It’s a really hopeful situation,” said Lori Lochelt, the HIV/AIDS coordinator for the North Idaho AIDS Coalition. “It’s probably making AIDS not as scary as it used to be. But we still need to push prevention, and push hard.”
AIDS doctors are impressed by the drugs but wary about prescribing too much hope. Dr. Daniel Coulston of Spokane is an epidemic veteran who follows about 80 patients with AIDS and HIV in the Inland Northwest.
“We haven’t had an AIDS death in over a year in my practice, which is incredibly unusual,” he said.
Some patients have seen their viral loads drop from more than a million copies of viral RNA per cubic milliliter of blood to undetectable levels. Their T-cells - the white blood cells that fight infection - have skyrocketed.
There are Lazarus stories, like the man who weighed 80 pounds, wasting away in a prison infirmary bed with ulcerated legs. Within a month of taking the drugs, he was walking, and he kept on walking and gaining weight when he was released weeks later.
There’s the man who gained 40 pounds and returned to work. The man whose T-cell count spiked from 5 to 93. The countless stories of people who were supposed to die and didn’t.
“It’s made them focus more on living with AIDS rather than dying with AIDS,” said Lisa Gainer, a social worker with North Idaho Hospice.
Porter wants to return to school to finish his teaching certificate, which he abandoned when he learned he was HIV-positive about 10 years ago.
Craig, who didn’t want his last named used, learned he had AIDS in 1993, after pounding headaches and flashes of light behind his eyes put him in the hospital just weeks after moving to Spokane.
He was living on a nest egg from a sold business, and he didn’t have health insurance.
Craig sold off his property and created trust funds for his two sons and another trust fund for his medical care. Although blind, he was foolhardy, hopping on a snowmobile and landing back in the hospital. He was living like he was dying.
“I was not expecting to live,” said Craig, 33. “I did not know anything, except that I would die.”
Now, he’s going back to school and planning to start a new career. Craig still cannot hear out of his left ear, muffled by an infection. His left eye looks smeared, a blind shadow, but an operation restored the sight in his right eye. Craig has built a new home, made new friends.
“This drug therapy, this was the only hope for me,” Craig said. “This was the changing point in my life.”
But all the news from the drugs isn’t good. Some patients who have been on the same protease inhibitor for almost two years are starting to see their viral levels increase again.
Porter, selected to be in a trial for the protease inhibitor Crixivan in June 1995, has been on the drugs longer than most patients. His viral load started dropping almost immediately, falling to undetectable levels by January 1996.
The virus started showing up again last October, so he switched in December to an experimental protease inhibitor called nelfinavir mesylate.
“It’s not a cure by any means,” Porter said. “For about a year, they’re effective. Then, the virus learns to reproduce around the new obstacles.”
The drug therapy is a combination that works like a prizefighter, hitting the virus in one reproductive enzyme and then another.
Protease inhibitors gum up the key enzyme protease, made by the virus during a late stage of reproduction. Without the enzyme, the virus cannot cut long chains of proteins and enzymes into the shorter pieces needed to make new infectious copies of itself.
The drugs AZT and 3TC, members of a drug class known as reverse transcriptase inhibitors, hit the virus earlier in its reproductive cycle.
Researchers are always seeking new ways to slow or stop virus replication to thwart drug resistance. As long as the virus can replicate, it can mutate, making drug resistance inevitable and drug therapy ineffective.
Doctors and patient advocates are hopeful about new treatments in the pipeline.
“I don’t see patients bottoming out,” said Dr. John Wallace of Spokane, who tracks about 35 patients with HIV or AIDS. “I see new drugs coming.”
Some patients can’t adhere to the strict drug schedule. Social services groups worry about others, like IV drug users, who either fail to be tested or fail to find their way to the drugs, which can cost thousands of dollars a month.
Some people just can’t stomach the powerful drugs, with side effects like diarrhea every 10 minutes, sleepless nights and kidney stones. Lynn, a 44-year-old Spokane woman, tried a cocktail for two weeks, but she couldn’t use her legs and lost control of her bladder.
“Sometimes I don’t think these drugs are made out to be what they are,” she said, “because I’ve seen them do good and I’ve seen them do bad. It all depends on the individual.”
But for many, the drugs are a capsule of hope, a stopgap until the next best treatment.
Patients talk wistfully about a cure while facing reality, which all the drugs in the world can’t change.
“I could still die,” Porter said.
“It’s that simple. There’s no drug, there’s nothing out there to repair an immune system.”