New studies highlight racial disparity, treatment access among HIV patients
November 1, 2002
Differences chiefly due to economic disparity
The good news from some of the latest research into the differences between minority and white HIV patients and access to HIV treatment is that there were not huge disparities within HIV programs. On the other hand? "When you sum it up across states and programs, you get disparities," says Stephen F. Morin, PhD, professor of medicine at the University of California-San Francisco (UCSF), AIDS Research Institute. "So it’s a complicated picture, and there’s a huge difference in how people receive care through Medicaid and the AIDS Drug Assistance Program (ADAP)," Morin adds. "African-Americans are far more likely to receive access to antiretrovirals through Medicaid, and people on Medicaid are less likely to be on optimum therapy than people in ADAP," he says.
Research presented at the recent 2002 Ryan White Comprehensive AIDS Resources Emergency conference, sponsored by the Health Resources and Services Administration (HRSA) of Rockville, MD, indicated that differences in household income and disability status led to proportionately more African-Americans in Medicaid programs than are whites and Latinos. Studies also showed a greater proportion of Latinos in ADAP programs than in Medicaid, a difference that investigators attributed partly to the fact that Medicaid programs require a residency test for enrollees and ADAPs do not.1
However, while Medicaid programs in many states tend to provide less optimal medication coverage for the HIV-infected person than ADAPs, that doesn’t mean necessarily that ADAPs provide better access to HIV care, notes T. Anne Richards, MA, a research specialist with the UCSF Department of Medicine. "The main issue with ADAP is a lack of comprehensive services or limited comprehensive services," Richards says. "ADAP does a great job of filling the gap, and everyone at every single clinic we studied said they were so grateful for what ADAP provided," she adds. "But there also were those patients who didn’t have a disability or AIDS diagnosis, and so how do they go about dealing with their other medical needs?"
In the Texas HIV clinics that were studied, there were huge system barriers, such as services that were spread out geographically, making it difficult for poor and working-class clients to take advantage of all that was offered. And in some cases, there were no Spanish-speaking providers on hand, so Hispanic patients might have to rely on less reliable translation services, Richards says. The third system barrier was a $5 copay requirement for prescriptions made through ADAP, which is an enormous financial barrier for the low-income HIV clients who often had to pay that copay on three or four medications, Richards says.
Policies vary by state
Perhaps the biggest problem with the current Medicaid/ADAP safety net for uninsured and poverty-level people infected with HIV is that their access to care is largely dependent upon their state of residence and whether they were tested for HIV soon after becoming infected, the research shows.2
Some states have stringent Medicaid requirements in which enrollees must have an AIDS-defining illness or a disability before they qualify for HIV medications and services. And in some states and communities, minorities are less likely to learn their HIV status until after they begin to experience symptoms, Richards says. "In an African-American clinic in rural Florida, many people didn’t want to know their HIV status because there was so much stigma attached to it," Richards recalls. But in a New York urban clinic, African-Americans were as likely to be tested early as whites because this was an area where the disease had been around for a long time, perhaps lessening the stigma attached to it, Richards adds. Another reason minorities often begin HIV treatment later than whites is because of a lack of trust in government and a suspicion of HIV drugs, investigators surmise.2
This issue of early testing and access first became a public health concern in 2000 during the Ryan White reauthorization, says Scott Brawley, MSW, director of public policy for AIDS Action, an advocacy group in Washington, DC. "The underlying theme over the past 2½ years for all Ryan White Care Act programs has been to bring people into care sooner," Brawley says.
HRSA’s interest in the issue of disparity in HIV care initially was prompted by concerns raised by the Congressional Black Caucus after some earlier national statistics indicated that African-Americans were less likely to participate in ADAPs than other racial groups, Morin says. "The only way you can find out what’s going on is to do state-based case studies because the aggregate national data are all confounded by states setting criteria for both Medicaid and ADAP," Morin explains. "So we had to go into state records to find out exactly what is going on."
Investigators in California, New York, and Texas began to study the issue by closely examining the reimbursement claims and AIDS surveillance data and interviewing administrators and others in those three states, as well as in Florida.1,2,3,4 Their findings showed that racial disparities exist in the utilization of antiretrovirals, but this was only a small part of the picture.
Researchers also found that many clinicians, clinics, and states were taking positive steps toward reducing these disparities and improving early HIV testing and care among minority groups.4 For example, New York has an excellent Medi-caid system that provides financial incentives to specialty providers, so they are motivated to treat low-income patients with HIV infection, Morin points out. New York’s Medicaid program does not require enrollees to have a disability or advanced illness before they may participate, and this means that patients are treated earlier in the course of their infection, he adds.
In New York, there are proportionately more African-Americans enrolled in Medicaid due to a lower socioeconomic status overall, says Guthrie S. Birkhead, MD, MPH, director of the New York State Department of Health, AIDS Institute in Albany.
However, this doesn’t mean that African-Americans in that state receive less optimal care, Birkhead says. "Medicaid provides a range of services that include hospital care, intensive case management, and other services," he says. "We have AIDS-designated hospitals and enhanced fees for physicians who sign up to care for AIDS patients, and that has enabled us to develop a clinical infrastructure to provide HIV services." The next step is for the New York Medicaid program to move toward a managed care model for HIV patients, creating an environment in which patient care is coordinated, Birkhead adds.
While New York’s program might be a model for Medicaid, the reality is that in many states the poor people who qualify for Medicaid economically must be very sick before they are eligible for antiretroviral drugs, Brawley says. "Medicaid has categorical eligibility requirements of single mothers, poverty level, and children on Medicaid. HIV in some states is a categorical option, but not a required option," he says.
This is why AIDS Action and other national HIV advocacy groups have been pushing for national legislation that would remove barriers to early treatment for HIV-infected people through Medicaid. U.S. Rep. Nancy Pelosi (D-CA) and others in Congress have sponsored a bill called the Early Treatment for HIV Act of 2001, which would enable more HIV-infected poor people to receive antiretrovirals and HIV treatment before their disease progressed to illness, Brawley says.
However, the bill has been stalled in the House subcommittee on health shortly after it was introduced in June 2001. Also, 2002 has not been a good year for a bill that would cost states more money, he notes. "Now states are facing such extreme shortfalls," Brawley says. "Some states [such as] North Carolina and Tennessee say they can’t bring more people into Medicaid programs."
References
1. Kahn JG, Zhang X, Cross LT, et al. Access to and use of HIV antiretroviral therapy: Variation by race/ethnicity in two public insurance programs in the U.S. Public Health Rep 2002; 117(3). In production.
2. Morin SF, Sengupta S, Cozen M, et al. Responding to racial and ethnic disparities in use of HIV drugs: Analysis of state policies. Public Health Rep 2002; 118(3). In production.
3. Palacio H, Kahn JG, Richards TA, et al. Effect of race and/or ethnicity in use of antiretrovirals and prophylaxis for opportunistic infection: A review of the literature. Public Health Rep 2002; 117(3). In production.
4. Richards TA, Palacio H, Kahn JG, et al. The HIV care continuum in publicly funded clinics. Public Health Rep 2002; 117(3). In production.
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