The nightmares and hallucinations began for Rae Lewis-Thornton two months ago.
"I had a dream someone attacked me in front of a policeman and he didn't come to my rescue," she says. "I never quite had dreams like this before."
Lewis-Thornton, 39, believes her mental problems are due to the new type of drug she is taking to kill the AIDS virus that has infected her immune system since 1986.
The drugs have extended her life as they have for tens of thousands of Americans living with HIV and with AIDS. But 20 years into the epidemic, they remain badly flawed.
The drug is the 20th or so medication she has had to take either daily or for months on end. The pills fight the virus and the opportunistic infections she has suffered, such as pneumonia and severe shingles.
"The longer I have had to take these pills, the harder it is," says Lewis-Thornton, a former political activist who worked on Jesse Jackson's presidential campaign. "It's the least amount of pills I have had to take. But the hallucinations, that's a great price."
Drugs Extend Life, But at a Cost
The drugs are imperfect: Experts say they only extend life, on average, 1.8 years for people with AIDS, and have many severe side effects. Some people live longer, others shorter, on the drugs. About 10 percent of AIDS deaths now are due to protease inhibitor-induced heart disease.
As an effective vaccine is at least 10 years away, drugs currently in development remain the hope for the 320,000 Americans living with AIDS and the other 500,000 who are infected with the virus. It takes about 10 years for HIV-positive people — who may have differing degrees of symptoms — to develop AIDS, characterized by the more severe disorders. These include cancer and infections, which a healthy immune system normally keeps in check.
"The AIDS epidemic shows what can be accomplished in biomedical research when resources are put to a problem" says Dr. Anthony Fauci, the director of the federal National Institute of Allergies and Infectious Diseases.
"With lots of money we have made many extraordinary advances. But we still need better drugs that are less toxic, more potent and more user- friendly."
Changing Treatments Over Time
Lewis-Thornton, who now lectures young people about AIDS for AIDS Action, an advocacy group in Washington D.C., has been living with HIV/AIDS for nearly as long as the epidemic's 20 years. Her treatment reflects how AIDS therapy has changed over the past two decades.
In the beginning, hospitals in New York City and San Francisco — then the epicenters of the epidemic — were overcrowded with AIDS patients. Without drugs, people with AIDS were dying less than a year after developing AIDS-related diseases, Kaposi's sarcoma, a cancer, and pneumocystis pneumonia.
Today, with antivirals and drugs treating the AIDS-related diseases, the hospitals have cleared out. AZT, the first drug to treat AIDS, a so-called reverse transcriptase inhibitor, was approved in 1987. But by 1993, patients were showing resistance to it and research showed that treatment with AZT did not decrease the onset of AIDS. Drugs similar to AZT were soon developed and gave physicians more options against resistance.
Lewis-Thornton took a high dose of AZT in 1989, because at the time it was believed it would kill the virus, even though those levels now are considered toxic. She says she constantly felt nauseated but took antacids to help her cope.