Cynthia Gordy is The Root's Washington reporter.
This month marks the 30th anniversary of the first reported cases of HIV/AIDS in the United States, an occasion that has prompted reflection on advances made in fighting the epidemic. Antiretroviral drug treatments have transformed the virus in this country from a fatal disease to a manageable chronic condition. HIV transmission to newborns has been virtually eliminated. The national infection rate has declined by 60 percent.
Of course, the epidemic continues despite the successes — especially among African Americans, who account for nearly half of the nation's new HIV infections. And recent economic challenges actually threaten to roll back decades of progress, as cash-strapped states reduce access to lifesaving medicine for thousands of HIV patients.
Facing budget shortfalls, 17 states have scaled back AIDS Drug Assistance Programs (ADAPs), which help about 174,000 poor or uninsured patients pay for expensive HIV medication. Through lowered income-eligibility thresholds or direct funding cuts, HIV-positive people have been thrown off insurance rolls, and a record high of 8,111 are on waiting lists (pdf) for antiretrovirals and other drugs. The actual need is likely greater, since some states have eliminated waiting lists altogether.
The federal government pays for most of ADAP funding, supplemented by states. But the contributions have not kept pace with a demand that has only increased with rising unemployment as more Americans lose their health insurance. AIDS activists say that while they understand the challenge of both federal and state budget constraints, medication that thousands depend on to stay alive is a terrible place to look for savings.
"The budget is not just a fiscal document but a moral document," Raphael Warnock, senior pastor of Atlanta's Ebenezer Baptist Church and chair of the Black Leadership Commission on AIDS of Metro Atlanta, told The Root. "It is a statement about what we the people view as important, and who we think is unimportant. Too often our deficits are balanced on the backs of those who can least afford it."
The Funding Fight
Spilling with 1,599 people, the ADAP waiting list of Warnock's state of Georgia is the second-longest waiting list in the country. He and other local activists find it particularly galling, then, that the state recently cut $100,000 from its program.
Officials from the Georgia Department of Community Health say that they're doing the best they can with insufficient federal funding to help them cover newly eligible patients. With the average cocktail of HIV/AIDS drugs costing $12,000 a year per person, it's a tall order for a cash-strapped state.
To help bridge the wide coverage gap, Georgia is relying on charity programs in which pharmaceutical companies donate medication. The majority of people on Georgia's waiting list are being served by them, but it's an unreliable, quick fix, which depends on whatever donations they can get.
Florida, which has the nation's longest ADAP waiting list at 3,520, is also leaning on assistance from pharmaceutical companies to cover most of their frozen-out patients. As a possible solution for trimming their list, state officials are considering cutting in half the income eligibility for their program, to $21,780 or less. The decision is still pending. "We are currently covering as many patients as we can with the funds that are available," Jessica Hammonds, press secretary for the Florida Department of Health, told The Root.
The federal government likewise insists that it is aggressively responding to the ADAP funding crisis. This week the Health Resources and Services Administration, which administers the programs, announced that it's making an additional $50 million available this year to help states take people off waiting lists.
"But ADAP is one small part of our overall national response to HIV," Jeffrey Crowley, director of the White House Office of National AIDS Policy, told The Root. Explaining that most funding for HIV/AIDS care comes from Medicaid and Medicare, he pointed out that, under the Affordable Care Act, in 2014 Medicaid will expand to all adults with incomes below 133 percent of the poverty level. "That will take a lot of pressure off these programs. We're really trying to manage a short-term challenge."
And what about people who can't wait three years for treatment? The Centers for Medicare and Medicaid Services recently announced a new "fast track" option to help states accelerate their Medicaid expansion, specifically for HIV/AIDS patients, now.
Pushback From the Pulpit
Claims from both federal and state officials that they're doing everything they can under tough economic times are ringing hollow to skeptics who point out that poor black folks are disparately affected.
"In the 1980s when it was seen as a gay white man's disease, monies were piled up on top of monies to fight it," James Favorite, pastor of Beulah Baptist Institutional Church in Tampa, Fla., and chair of the Black Leadership Commission on AIDS of Tampa Bay. "Now that it's epidemic in the African-American community, it's not in the budget."
Pastor Warnock concurs that demographics are a factor in the cutbacks. "There's no question that if there was a preventable virus that was the number one killer of white women of childbearing age, then we'd be having a much different response," he said, adding that HIV stigma linked to sexual orientation and class further contributes to the dynamic.
Favorite and Warnock are both members of the National Black Leadership Commission on AIDS, a nonprofit designed to educate and mobilize local black communities around HIV/AIDS. On the issue of ADAP funding, the organization argues that the government's failure to sufficiently support the program is not only morally outrageous but also illogical from public health and economic angles.
A recent clinical trial released by the National Institutes of Health found that HIV-positive people who received early treatment reduced their risk of passing the disease on by 96 percent. Furthermore, while HIV medications are expensive, the cost to taxpayers rises astronomically if untreated patients require frequent hospitalizations.
NBLCA also helped develop the National Black Clergy for the Elimination of HIV/AIDS Act, which would shore up more funding for prevention, testing and treatment in African-American communities. Rep. Charles Rangel (D-N.Y.) and Sen. Kirsten Gillibrand (D-N.Y.) introduced the bill in April, and it now has 23 co-sponsors.
"We're very serious," said Warnock, who, along with other black clergy members around the country, is lobbying Congress. "If we can spend $2 billion a week in Afghanistan with no obvious end in sight, we should be able to fight a war against HIV/AIDS."
In the meantime, black church leaders nationwide are meeting with local legislators on ADAP cuts, and continuing to engage their congregations about everything from the importance of knowing their status to collecting offerings for care organizations. With the disease's ties to sexuality, it is work that hasn't always meshed easily with the pulpit.
"We've had some pushback from other pastors who say that we really shouldn't be involved in this," said Favorite, who became an AIDS activist four years ago upon seeing the disease's devastation in his community. "Primarily it's because they don't understand what's happening."
Warnock also got involved after taking notice of the high AIDS rate in his church community at the time. Blase attitudes over the recent budget cuts, he said, also reflect a general misperception that the epidemic is under control. "In some ways, the successes in treatment that we've seen over the past 30 years are creating a new set of problems," he said. "Because we don't see the emaciated bodies that we saw in the 1980s and early '90s, people have become very relaxed. But this virus is very much with us."