The State of Treatment


One thing is clear about the new Congress and the Obama administration: They agree on the fact that health care reform, broadly, must be among the first policy challenges tackled in 2009. Indeed, the first nomination hearing the new Congress held upon convening in January was for Tom Daschle, Obama’s choice to lead the Department of Health and Human Services, as well as his newly created White House Office of Health Reform. Daschle has emphasized that he believes the Clinton-era reform effort failed primarily because the administration waited too long to roll it out, and he’s vowed not to repeat the mistake.

It’s similarly certain that the national debate over what our new health care system looks like will be a grueling one. So much so that, in early January, Obama’s transition team began floating CNN personality Sanjay Gupta as a candidate for surgeon general—bringing a celebrity voice and skilled television communicator to the team. The question remains, however, whether whatever system emerges from the fight will be one that is prepared to deal with the increasingly complex and steadily worsening AIDS epidemic.

Over the past 12 years, America’s combined successes and failures in responding to the AIDS epidemic have put the country on track for a major treatment access crisis. On one hand, the phenomenal success of antiretroviral drugs has kept people alive. The AIDS death rate in America plummeted 70 percent in just two years when combination therapy hit the market. Today, people living with HIV and AIDS have 28 meds in five drug classes from which they can build treatment regimens. More options are still on the way.

But the drugs are not a cure, and that means there are also more people in need of ongoing, lifelong care and treatment today than ever before. Many of them, particularly those who are black, do not have adequate private health insurance to cover the massive costs of that care. The federal program that supports care and treatment costs for low-income people with HIV/AIDS had more than half a million clients in 2006 and paid for meds for just under a third of people with AIDS getting treatment. Medicaid and Medicare cover about half of people in treatment.

States share the costs of these public care systems with the federal government—and carry a significant portion of the financial burden. That’s bad news in the current economy. As governors and state legislators scramble to deal with exploding budget deficits, AIDS programs are as likely as any other to face serious budget cuts. This, just as more people lose private insurance and turn to the public system. In many states, particularly in the South, AIDS programs are likely to be among the most vulnerable. Yet, the already tattered AIDS safety net—which has been severely neglected over the past eight years—can hardly afford that financial instability.

Death in Black America

In 2006, the latest year for which data is available, 7,426 black Americans died from AIDS. That number represents a meaningful improvement over the previous year—a decline of 1,253 deaths. That’s in keeping with the trend of steadily declining annual deaths that began more than a decade ago, with the arrival of combination therapy.

But despite the improvement in numbers, black Americans continue to represent a far outsized proportion of deaths each year. In 2006, blacks accounted for just over half of all AIDS deaths, though we represent just 12 percent of the population. The racial disparity in AIDS deaths is the countering trend to the gradually decreasing number of annual deaths: Blacks have accounted for roughly half of annual deaths ever since combination therapy hit the market in the mid-1990s, and have represented a steadily increasing share of deaths since the epidemic’s start.

Similarly, southern states—which have larger black populations and rapidly intensifying epidemics—have hosted a steadily increasing share of deaths since the treatment revolution of the mid-to-late 1990s. In 2005, more than four in 10 AIDS deaths occurred in the South.

Researchers have explored many reasons for the racial disparity in AIDS deaths, and there are many more we don’t yet know or understand. But one contributing factor that seems certain is the fact that blacks are less likely to learn about their HIV infection before they get sick and, thus, before the infection reaches an advanced stage. The HIV therapies that have kept patients alive for the last 12 years depend upon halting the virus’ progress before it has dug too deeply into the body to reverse.

HIV testing numbers can be deceptive. Black Americans are significantly more likely to report having been tested recently than other racial and ethnic groups. But at the same time, a far larger share of Black Americans is likely to be HIV positive—which means a far larger share of positive Blacks haven’t been tested. The CDC estimates more than half of HIV positive blacks are undiagnosed. Black gay and bisexual men are particularly likely to discover their infections only after it has reached advanced stages.