In a new finding that contradicts previous research, Johns Hopkins scientists say women and minorities with HIV develop AIDS faster and die sooner not because of their sex, race or other factors, but simply because they're not getting health care.
The study, published today in the New England Journal of Medicine, showed that the difficulties in gaining good health care outweigh any demographic factors in determining how soon people infected with HIV will develop AIDS, and how long they will survive.
That scientific conclusion is common sense for social workers, advocates and patients with HIV and AIDS. Patients say they've been routinely turned away, humiliated and mistreated because of their illness.
Many times, they're treated like lepers, those with AIDS say.
In the back corners of emergency rooms, nurses have pointed at them and whispered. At some clinics, they're told the doctors don't know how to deal with AIDS, and to go someplace else. Some patients, tired of the reaction, will lie and say they have tuberculosis, rather than face the possible ridicule and rejection by some health care workers.
"They were afraid of me," said Francine Scott, a Baltimore woman who has HIV. "They made me scared of what I was."
These problems ultimately block many women, minorities, poor people and intravenous drug users from getting the health care they need, social workers and doctors say. But until now, researchers theorized such people were dying -- in some cases as much as two years earlier than they should -- because of biological differences.
Dr. Richard E. Chaisson and his colleagues looked at 1,372 HIV-positive patients who were receiving care at Johns Hopkins Hospital. A third of the patients died during the study, but there were no significant survival differences according to sex, race, housing status, type of health insurance, level of education, or whether they were using intravenous drugs.
"We conclude that it's quality of care, not biology, that determines differences in the outcomes of HIV and AIDS in different populations," said Dr. Chaisson, the study's principal investigator and director of the Johns Hopkins AIDS Service. "If we find a patient who has not been getting appropriate care and start providing it, they benefit immediately -- and that's important," he said.
The report also confirmed an earlier finding that showed HIV-infected blacks, women and IV-drug users referred to Hopkins for treatment were significantly less likely than white males to have already received appropriate treatment for HIV.
For many, reaching the place to get the specialty care they need is difficult. They're already struggling with poverty, lack of health insurance and other issues. Once they're in the door, though, they face other obstacles.
Mrs. Scott, 47, will never forget the summer night in 1988 she showed up at a local emergency room. She had been diagnosed with HIV two years before, but this night, she had flu-like symptoms. She feared it was the beginning of the end.
She was put in an isolation room that she calls a "holding cell." Doctors and nurses tried to touch her as little as possible.
"It was like I was around all these people and these machines and these intelligent doctors, and I felt totally alone," said the Baltimore woman. "It made me think that maybe I could do some harm to them. And I thought well, if this is how it's going to be, I don't want to go through this."
Susan Rucker, team leader for Johns Hopkins AIDS Service social work team, says that at least once a week she deals with a patient who has been treated badly because of the illness. Some patients, she said, are discharged from other hospitals, put in cabs and sent to Hopkins.
She also sees problems with confidentiality, like records from other clinics and hospitals that are marked with "AIDS" in 2- to 3-inch-high letters.
Dr. Martin P. Wasserman, state health secretary, said that health officials are considering these factors as they work on a proposal to put most of the state's Medicaid population into health maintenance organization. A significant proportion of AIDS patients are on Medicaid. Under the proposed system, Dr. Wasserman noted that patients would have a "medical home" where they could get the appropriate preventive and other medical care.
But patients said individuals will have to change, too.
Cynthia Ray, 29, who got the virus through unprotected sex, remembers a nurse's warmth and compassion when she lied recently -- because she just couldn't face another harsh reaction -- and said she contracted HIV through a blood transfusion.
"I just look at them, and I pity them, because they're supposed to help us, but instead they just tear us down," Ms. Ray said. "In my heart I believe no one deserves this disease, not if you're a prostitute, or IV-drug user, or just a one-night stand, no one deserves this."