9. Health Care Access: Myths and Medicaid Messes
The average quality of U.S. health care ranks a lousy 37th in the world, according to a report by the World Health Organization. It's a national shame that many black Americans have access to health care below even that level.
Longstanding neglect -- and, occasionally, outright abuse -- of African-Americans by both public and private medical systems have contributed enormously to the spread of HIV. In turn, longstanding suspicion -- and, occasionally, irrational paranoia -- of the healthcare system by African Americans has only exacerbated a vicious cycle.
In 2004, 56 percent of all "late testers" -- people diagnosed with AIDS within one year of an HIV diagnosis -- were African American. This fact testifies to the human toll of this pattern of neglect and suspicion. That's why U.S. Representative Barbara Lee believes, "We have to fight to get a seat at the table, to get clinics and hospitals in our communities, to get doctors and nurses that look like us and speak like us, and to get AIDS funding like the Minority HIV/AIDS Initiative."
At the forefront of this fight are two doctor-led groups. Integrated Minority AIDS Network, Inc., a coalition of African-American HIV specialists, educates clinicians and other providers in minority communities about HIV issues that are specific to African Americans. Meanwhile, the Black Clinical Research Consortium studies how HIV and its meds affect black Americans, and advocates for increased participation by African Americans in clinical trials of experimental meds.
Women Alive's Carrie Broadus points out that, since most AIDS research has been conducted on white gay men, women of color face a double challenge. "We must address current bias against women of color within the HIV healthcare system by acknowledging historical discrimination in research, and cultural and gender biases that impede expanding HIV-positive women's access to clinical trials and new medications," she says. This is equally true for African-American transgender people, who may have the highest HIV rates in the U.S. and face a complex tangle of medical issues and medical stigma.
Of course, advocates point out that, while access to a doctor and to HIV medications are necessary, those steps are not sufficient by themselves. The practical and emotional requirements of daily life must also be met in order for African Americans with HIV to succeed at sticking to their HIV treatment regimens, and to cope with the many other complexities of managing their disease. Housing, nutrition, transportation, child care, mental health counseling, drug and alcohol detox -- the list is long, the cost is high, and the willingness of the U.S. government to foot the bill for those who cannot themselves afford it is wearing thin.
In addition to President Bush's projected federal cutbacks in AIDS services, his recently enacted Medicaid reforms are having a dire effect on blacks with HIV -- a whopping two-thirds of whom depend on public funds for their treatment and care. One result of the new rules is that states may now charge co-pays for lifesaving drugs that can reach as much as several hundred dollars. The Congressional Budget Office has criticized Bush's plan because they say it is likely to discourage many people from even applying for Medicaid. With their virus untreated, HIVers may get sick and even die at much faster rates, resulting in soaring rates of hospitalizations and medical costs that far exceed the original amount that was needed to provide adequate care and treatment.
What you can do: To keep the shameful prospect of two very different HIV epidemics -- a chronic manageable disease for America's haves and a death sentence for the have-nots -- from becoming a reality, support elected officials and candidates who prioritize HIV/AIDS issues.
The Congressional Black Caucus has placed equal access to health care at the top of their agenda this year. Call them at 202-226-9776 and demand that they fight for legislation that protects money for HIV/AIDS, whether it's Medicaid, the Ryan White CARE Act, federal HIV research or HIV prevention.
Dr. Louis Sullivan
And when it comes to the African-American community's own mistrust and myths, speak out about your own experience. As Dr. Louis Sullivan says, "It's a situation in which very realistic and appropriate anxieties about actually testing positive or experiencing side effects are exacerbated by this generalized mistrust that, 'the testing centers give you AIDS' or, 'the drugs make you sicker than the disease.' ... But I do think as more and more African Americans have good experiences with testing and treatment, reality will put these fears to rest."
One reality check: Most of the HIVers in our Profiles in Courage section have white doctors -- and say they believe they are getting the best care possible.