The Cost of Living
Millions of Americans have been diagnosed with HIV and AIDS. An estimated 40,000 Americans are infected with the virus each year. Very few people living with HIV and AIDS are financially independent. Many depend on a network of agencies that provide services to assist and/or support their medical, housing, food and transportation needs.The agencies that provide services for those with HIV and AIDS rely on various forms of funding: federal, state, local and private donations. A majority of the money comes from the federal government. Recently several sources have reported that federal funding for agencies is stagnant and that federal HIV/AIDS spending is not keeping pace with the demand for services, putting a strain on financial resources available to HIV/AIDS patients.Advances in treatment are allowing most people affected by the virus to live longer. More people are contracting the virus than dying of it. Between 1995 and 1997 the nation's AIDS caseload expanded by 25 percent, even though AIDS-related deaths during the same period fell by more than 56 percent, according to the Catalyst newsletter.High-risk groups continue to become infected at an astronomical rate. African Americans and Hispanic Americans represent the majority of newly diagnosed cases of HIV/AIDS. According to the Centers for Disease Control and Prevention, African Americans and Hispanics are disproportionately affected by HIV/AIDS. An African American is eight times more likely to be diagnosed with AIDS -- and a Hispanic American almost four times as likely -- than a white American.HIV testing has become commonplace and more people are getting tested. It is estimated that more funding will be needed to provide HIV/AIDS services to the estimated 200,000-300,000 people who are HIV-positive but do not yet know that they are infected with the virus.The potential for a medical disaster is looming. There is a concern about patients living longer and needing services for a longer period of time, as well as the possible future explosion of new cases and limited funding."Back in the early '80s people did not live that long. Now with the new medication people are living much longer, which poses a new funding challenge," said Kathleen Cooper, executive director of the Good Samaritan Project, an organization that supports HIV positive people.The general public's complacent attitude toward HIV/AIDS presents a new set of challenges. People are less likely to donate to a disease that they erroneously perceive is cured. Another funding issue is that the face of those affected by HIV/AIDS is rapidly changing. Initially gay white men accounted for the majority of HIV/AIDS cases. Many were professionals with jobs that provided insurance. Now a large percentage of people being diagnosed have entry-level jobs with basic insurance. Many have no employment at all, which means more money is needed to provide basic services.FundingThere are several types of funding sources available for AIDS-related agencies: Ryan White Care Act, Housing Opportunities for People with AIDS (HOPWA), Centers for Disease Control and Prevention (CDC), the state general fund and the city general fund. The largest amount of money comes from the Ryan White Care Act which is a federally funded program created to distribute funds for HIV/AIDS services directly to metropolitan areas that have been especially hard hit by the epidemic.The Ryan White Care Act was named after an Indiana teenager who died from the disease in 1990 at the age of 18 just months before the federal legislation that bears his name became law. White, a hemophiliac diagnosed with AIDS at age 13, was prohibited from attending school by Indiana public school officials and spent the rest of his life fighting AIDS discrimination.Title I funding from the Ryan White Care Act provides metropolitan areas that have more than 2,000 cases of HIV/AIDS money for primary care. Title II money is allocated to all 50 states. Title III money is designated for federal health care providers. Sixteen cities received $275 million in the first year following the act's passage. 'On a wing and a prayer'Although many of the agencies that provide HIV/AIDS services are currently financially stable, many smaller organizations are on the opposite end of the spectrum. Funding for grassroots and community-based organizations has been limited.Marva Miller was diagnosed with HIV on Dec. 12, 1994. Three years ago, she started a grassroots advocacy organization, Woman on a Mission, which she now operates "on a wing and a prayer.""It's like pulling teeth to get people to sponsor our prevention workshop sessions," said Miller, who has traveled across the country speaking at conferences about HIV/AIDS issues.Woman on a Mission is an outreach organization for women who are infected with HIV. The fledgling organization is an information referral service that helps provides access to medications and health care. Miller's main focus is on prevention measures, and she wants to create an environment where women who are not infected can come and obtain information that will help decrease the spread of HIV, as well as other sexually transmitted diseases."In the African American community there is a huge distrust with the medical community," said Miller, "Until they have trust they are not going to be receptive to the information they need about HIV/AIDS. If we don't get a grip on this disease, black people are going to be extinct. We need money so we can get out into our community. I spend my own money and I'm living off of social security disability. I'm dedicated because I don't want to see any more people get infected."Drug moneyMedical treatment for those with HIV and AIDS can be expensive. The average cost of medication a year for a person diagnosed with AIDS is between $10,000 and $20,000. The routine is grueling. Patients must often take medicine 20-36 times a day, every day for the rest of their lives. The burden of paying for expensive medicine is the most serious problem and biggest factor in the shrinkage of money for HIV/AIDS patients.African Americans and Hispanics account for more than six out of 10 new AIDS cases. African Americans make up 13 percent of the U.S. population but account for 57 percent of all new HIV infections. However, a disproportionate share of resources for HIV prevention seems to be focused on gay white males."African Americans seek care much later than other cultures. By the time many finally seek help, they have already had the disease for five or 10 years," said AIDS activist Anthony Clark. "We need more money to market programs targeted specifically at African Americans and hiring more African Americans at agencies so that we can be the face that brings people in for treatment and care."The traditional AIDS infrastructure was created for white gay males," Clark said. "Now that more African Americans are getting infected than whites means that we have the right to say more funds should be allocated for programs for us.""The agencies in place now provide wonderful services but I don't think many African Americans feel comfortable," said Clark. "I think you would see a shift and more people willing to participate and seek help if we had organizations operated by our own."Preventing another crisisPrevention is viewed by many as the most critical component in the fight against the spread of HIV and AIDS. However, many prevention programs struggle to get funding or are often the first component of the budget to get cut because money must be used to deal with patients already infected. "Prevention is the number one concern because there are more people who are not infected than have HIV/AIDS," said Miller. "If we can prevent them from becoming infected, there will be more dollars available for people who have already contracted the disease."