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.
CDC and others speculate that this late-stage diagnosis is in part owing to blacks’ limited access to preventive health care. And that limited access to care, broadly, is itself likely an additional factor driving the racial disparity in deaths.
Study after study has shown black Americans overall to have less access to quality care than their peers. More than one in five blacks lacked health insurance in 2006, twice the rate among whites. This unequal health care system produces starkly unequal results, across the board. From diabetes to heart disease to prenatal care, blacks fare far worse with preventable, treatable diseases than any other racial or ethnic group. And as a result, life expectancy for black Americans is on par with the Gaza Strip, and lower than that of countries like Algeria and Sri Lanka.
Making up Lost Time
HIV-positive blacks who do find care and treatment are far more likely to get it through a public program, such as Medicaid, Medicare of the AIDS Drug Assistance Program. One study found that two thirds of blacks in treatment for HIV rely upon public insurance programs.
Indeed, a close look at the clients who rely upon programs funded by the Ryan White CARE Act is telling.
The CARE Act is the primary vehicle Congress uses to direct AIDS funds to state and local governments, who then augment the resources and disperse them to local-level efforts. The CARE Act funds things ranging from community-based clinics to the AIDS Drug Assistance Program, which purchases medications for people who don’t qualify for Medicaid but are nonetheless uninsured or inadequately insured.
In 2006, 59 percent of CARE Act clients were people of color. Nearly a third of people with AIDS getting treatment that year paid for it with ADAP, and 60 percent of those people were of color.
But these public health care systems face enormous budgetary pressures today. Even before the economic collapse of 2008 gripped state budgets nationwide, both Medicaid and CARE Act programs had been on a multi-year slide to insolvency. ADAP systems—administered at the state level—face budget shortfalls every year, leading to waiting lists and service cuts. As recently as 2007, at least four people died while lingering on the waiting list for service in South Carolina.
Today, ADAP is on more stable ground, after Congress pumped emergency funding into the program. In the current fiscal year, it’s one of few AIDS programs to have received additional resources. The Medicare prescription drug benefit has also helped to offset ADAP expenses. But these piecemeal responses are not likely enough to prevent the crisis from returning. And beyond ADAP, local level CARE Act programs around the country have been reporting resource shortages for years, forcing them to cut back on services.
The difficult reality is that even as the epidemic has grown larger than ever—and, thus, the demands on the AIDS care and treatment safety net greater than ever—funding has ceased to increase. And, as with HIV prevention funding, in many cases resources for AIDS care and treatment have shrunk during the Bush years—and in real dollar terms have certainly done so.
Medicaid, Medicare and Social Security are mandatory items in the U.S. budget, and federal funding for them must rise and fall according to a set formula. Together, they account for roughly half of the U.S. domestic AIDS budget. The rest is discretionary, decided upon by Congress and the White House each year—and they’ve decided not to spend. Between 2004 and 2008, the discretionary domestic AIDS budget remained virtually flat, while global spending increased by more than 20 percent annually.
Meanwhile, the CARE Act awaits—and needs—significant reforms.
The program must be reauthorized every five years, and was due for its regular reevaluation in 2005. But a bitter geographic feud has delayed the process. Southern states and their congressional representatives have argued that the existing formula for dividing up the money is unfair because it bias’ older, urban epidemics in places like New York City and San Francisco. Lawmakers and advocates in those places have pushed back, arguing that they face problems of their own and should not be penalized for having dealt with them for decades. A compromise bill reauthorized the program for three years and set in motion a process for an orderly, comprehensive review, led by Sen. Ted Kennedy’s office.
In Tom Daschle’s confirmation hearings, two Republican senators—North Carolina’s Richard Burr and Oklahoma’s Tom Coburn—asked Daschle to commit that federal dollars would “follow the epidemic.” That means directing more money to Black communities, sure, but the geographic jab could not be missed either.
“Do you agree with me,” Burr asked during his questioning, “that the funding should follow those that are infected with HIV?”
“While I think there are differences with regard to how the overall funding ought to be calculated,” Daschle responded, “I generally believe that that direction in funding is appropriate and ought to be respected.”
Obama has vowed to deal with all of these AIDS treatment and care challenges through his broader health system reforms. He argues his plan will achieve universal health coverage in America. The details will be hashed out over the coming months, but the broad idea is to build a public program to compete with existing private insurers.
So what will Obama’s new public insurance program look like? During the campaign, he outlined a few broad principles:
*Employers will have to either offer insurance or contribute to the program;
*The public plan will be on par with that offered through the Federal Employees Health Benefits Program, which insures members of Congress;
*The public plan will be portable—or, not tied to any employer;
*He will create a National Health Insurance Exchange, which will act as a clearinghouse for people to buy the public or any private plan. The Exchange will also serve as a quality-control watchdog for those plans.
Two features are most specifically relevant for people living with HIV and AIDS:
*People who can’t afford the public plan but don’t qualify for Medicaid will receive a subsidy they can use toward buying either public or private coverage—and Obama vows to expand Medicaid, including to allow people who are living with HIV but not yet disabled to qualify;
*No plan, public or private, will be able to deny coverage based on preexisting conditions;
But the most important commitment Obama has made to making sure everyone living with HIV/AIDS has access to care is the same one that matters for his prevention goals, too. He has vowed to draft and begin implementing America’s first-ever national strategy on AIDS.
It’s hard to believe, but 27 years into this epidemic, the federal government has never sat down and developed an overarching plan for how it will use its AIDS resources—a task that we wisely demand any nation receiving foreign assistance for HIV work first complete. No surprise then that, billions of dollars later, we’re still watching the epidemic grow and people die despite the breakthroughs we’ve made in treatment science.
In its October 2007 AIDS platform, the Obama campaign pledged that “in the first year of his presidency, he will develop and begin to implement a comprehensive HIV/AIDS strategy that includes all federal agencies.” The platform further specified that Obama’s strategy will include “measurable goals, timelines and accountability mechanisms.”
It will be easy for both the Obama administration and the Black community to allow this pledge to languish on the back burner. The new administration and Congress face massive, historic challenges, to be sure—a global economic collapse, war on multiple fronts, a broader debate over health reform. The unfortunate reality is they must deal with all of these challenges simultaneously, and that includes addressing HIV/AIDS. The problem has grown more urgent, more complex and more expensive as we’ve allowed it to become a decreasing priority over the past decade. Simply put, it is one more issue that we cannot afford to allow Barack Obama to ignore.