A recent study of HIV-positive patients who died at a public hospital in Dallas, Texas, found that half were not taking potentially life-saving anti-retroviral drugs. The results are not surprising to many in the AIDS services industry.
"When I take them, I open this up...." explains Sue Gibson. Every week, she makes a trip to the pharmacy and sorts the dozens of tablets she receives into a pillbox with slots for morning, noon and night.
"I have one pill that incorporate three drugs twice a day, and a different medication that is two different capsules once a day," she says.
Ms. Gibson has been HIV-positive since 1989. She takes anti-retroviral drugs, commonly known as the HAART Cocktail, to contain the virus. And, she swallows an additional 12 pills each night to fight off the side effects, such as joint pain, insomnia and lipodystrophy, which has redistributed her body fat to her abdomen.
"The side effects are very disturbing...." she admits. "I look like I'm about eight months pregnant and that's embarrassing."
Last summer, the pain from taking HAART was so bad that Sue Gibson took a brief drug "vacation." She quickly became very sick and returned to the regimen. But she is sympathetic toward her friends who have chosen to make their "vacations" permanent.
"I do understand. I understand that decision very easily," she says.
Researchers who had long praised the 1996 introduction of Highly Active Anti-Retroviral Therapy are now beginning to acknowledge the drug cocktail's limitations. A study published this year in the journal Clinical Infectious Diseases revealed that 52 percent of the HIV-infected patients who died at a public hospital in Dallas, Texas, were not taking HAART.
"I didn't expect it to be that high," says Dr. Jain. "And it really made you think, these are patients whose deaths you wonder if they could have been preventable."
Doctor Mamta Jain researches HIV at the University of Texas Southwestern Medical Center in Dallas. Her study tracked HIV-related deaths at Dallas Parkland Hospital before and after HAART was available. The total number of deaths declined over that five-year period. But despite the introduction of HAART, many patients were still dying from a common AIDS-related illness.
"PCP pneumonia was the leading cause of death in 1995 in our patient population and it was also the leading cause of death in 1999-2000, which was a little surprising because PCP is something that if you take prophylaxis for, you can prevent it," explains Dr. Jain.
Leaders in the local AIDS services community estimate a third of the HIV-positive population doesn't take the anti-retroviral drugs they're prescribed, and another third doesn't even know they have the virus. Those were the top two reasons patients in the Parkland study were not on HAART at the time of their deaths. But Doctor Jain is especially concerned about those statistics because ethnic minorities made up more than half of both groups.
"So it makes you wonder if access to care, if immigration issues, if all of those factors may not have been a barrier to them coming in," she says.
Women, Hispanics and African-Americans are among Parkland's fastest growing groups of HIV-positive patients. But according to Dr. Philip Kaiser, Parkland's Director of HIV and AIDS Services, there's been little advocacy and education in those communities. So now, he says, that's where the hospital is targeting its outreach efforts. "The sorts of things we're trying to do is place clinics in communities where they have high rates of HIV, clinics in communities of color," says Dr. Kaiser. "We're actually working with the Urban League to establish a clinic in southern Dallas."
Parkland has also launched a once-a-month women-only clinic at the hospital to encourage its female patients to seek and adhere to HIV therapy. But Dr. Kaiser said given the results of the Parkland study, as well as other reports, the heyday of the HAART-era may have come and gone.
"These drugs have dropped the death rate about 70% but we've gotten about all we can get out of them," says Dr. Kaiser. "So unless we get new drugs or new classes of drugs that work better than what we have now, we're going to probably see continued death rates along the same lines."
Indeed, Dallas County has seen a 20 percent jump in the number of new AIDS cases since 1999... although the death rate has stayed relatively level. Short of a cure, doctors hope education, outreach and more tolerable drugs can prevent the disease from spreading further.