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Embargoed for release on Dec. 13, 1999
ONE-THIRD OF U.S. HIV PATIENTS REPORT DELAYING OR FORGOING MEDICAL CARE BECAUSE OF CONFLICTING NEEDS
One-third of the nation's HIV patients say they have either gone without or postponed medical care because they needed to attend to life necessities such as paying rent or going to work, according to a study by researchers from UCLA, RAND and other institutions.
In addition, about 8 percent of the patients said they went without food, clothing or housing because they needed to spend their money on medical care, according to a report in the December edition of the journal Medical Care.
The findings suggest that in order for all HIV patients to benefit from improved medical therapies, more resources must be devoted to supporting patients' non-medical needs.
"We found that an enormous number of people are not receiving medical care that could help extend their lives," said Dr. William Cunningham, the study's lead author and an assistant professor at the UCLA schools of public health and medicine. "Our findings may only be the tip of the iceberg since we could only study people with some connection to the health care system."
Researchers found that HIV patients reported going without care because they needed to use their money to pay for food, clothing or housing. Factors that caused HIV patients to delay care included not having transportation to their health care provider, being unable to get out of work or being too sick to visit their health provider. People who were most likely to have gone without or postponed medical care were non-whites, drug users and members of lower socioeconomic groups.
The delays appear to affect the adequacy of medical care received by the HIV patients, according to the study.
People who delayed or went without care were more likely than other HIV patients to have never received antiretroviral therapy, potent drugs that have been show to lengthen the lives of people with HIV. Patients who postponed care also were more likely to have visited an emergency room without being hospitalized, suggesting they used the emergency room for health needs better managed in a doctor's office. The same group also reported low access to health care in general.
"This study highlights just how difficult life is for many HIV patients," Cunningham said. "They have to make painful choices between attending to their immediate subsistence needs or seeking preventive medical care where the benefits may only be realized years later."
The findings come from the HIV Cost and Services Utilization Study, the first large-scale effort to collect information on a nationally representative sample of persons in care for AIDS and HIV disease. Sponsored by the U.S. Agency for Health Care Policy and Research, other federal agencies, and several private sector partners, the study is led by Santa Monica-based RAND in conjunction with a broadbased consortium of private and public research institutions.
The latest study is based on interviews with 2,864 adult HIV patients who were randomly selected during the first two months of 1996 to accurately represent the nation's HIV-infected population. In addition to excluding adults treated exclusively outside the continental United States, the study excluded adults treated only at military, prison, and emergency room facilities.
Cunningham said while there had been many reports of HIV-infected patients delaying or forgoing treatment, this is the first time researchers have probed the reasons for the delays. The issue is particularly relevant because of the development in recent years of antiretroviral drug therapy that can significantly delay the onset of AIDS symptoms and death.
"Our findings suggest it would be a mistake to put a lot of money into providing medicine alone," Cunningham said. "The success of getting people to follow these difficult medication regimes depends on the other challenges in their lives. We must also pay attention to the basic necessities of life if we want to keep them healthy."
Already there are national programs aimed at providing HIV-infected patients with their non-medical needs. The federal Ryan White Act was designed to address the needs of HIV-infected patients for medical care as well as more basic needs such as food, housing and transportation.
But Cunningham said the study suggests that more needs to be done to help HIV-infected patients with non-medical needs such as food, clothing, housing, transporation, home care and employment support.
Members of the research team were from RAND, the UCLA schools of public health and medicine, the San Francisco Department of Public Health, Brown University School of Medicine, Jefferson Medical College, Rutgers University Institute for Health, Critical Path AIDS Project in Philadelphia, and the Veterans Affairs San Diego Healthcare System.
The HIV Cost and Services Utilization Study is directed by physicians Martin F. Shapiro of RAND and UCLA and Samuel A. Bozzette of RAND, UC San Diego, and the Veterans Affairs San Diego Healthcare System.
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