Good news raises question over funding priorities
Push toward HIV prevention will be hard fight
Amid talk of an AIDS cure and the first decline in the rate of AIDS deaths, health officials are concerned that public misperception could lead to complacency and an eventual erosion of funding and support to fight the epidemic. At the same time, however, AIDS policy experts say the good news is forcing a much-needed dialogue over the need to shift research and surveillance priorities closer to prevention and early detection of infection.
"I am thrilled that the rates of mortality are going down. But we don’t have a clue as to whether the incidence of infection rates is going down as rapidly," notes Willard Cates Jr., MD, MPH, senior vice president for Family Health International, a nonprofit reproductive health research organization in Durham, NC, and former director of the division of STDs at the Centers for Disease Control and Prevention. "[Former CDC AIDS director] Jim Curran said many times that the greatest danger of AIDS is that it will be accepted as an ongoing epidemic and people will grow tired of it," Cates says.
A new Harris poll suggests attitudes toward the epidemic are already changing. Only about 10% of those surveyed were "very concerned" about contracting HIV about half the rate in 1991. The poll also found that only half of the people believed that AIDS was or would become an epidemic in this country, compared to 66% more than five years ago.
Echoing Curran’s concern, Sandra Thurman, in her first comments as the newly appointed director of the Office of National AIDS Policy, warned that new treatment advances were fueling the impression that the epidemic is over.
Funding parallels infection rates
The history of other infectious disease epidemics gives rise to the concern that lower infection rates are followed by lower funding and a reverse in gains. "If syphilis rates go down, so does funding, and as funding goes down for programs, syphilis rates go back up," Cates notes. Tuberculosis programs have experienced the same phenomenon, and TB officials also are concerned that the four-year decline in TB rates in the United States will bring back the complacency that fueled the epidemic during the last decade.
Thurman has set the tone of the new dialogue by arguing that science, not politics, should determine AIDS policy. In developing a new understanding of HIV pathogenesis, science has driven the recent push toward early detection and treatment of HIV as a way to both lengthen survival and decrease transmission. And now the push is coming up against the wall of fixed resources.
With no foreseeable increase for AIDS funding and the cost of new drugs eating up more federal and state dollars, AIDS programs are having to make difficult choices, says Mark Smith, MD, MPH, former chairman of the CDC’s Advisory Committee on HIV and president of the California Health Care Foundation in Oakland.
"More and more the issue will be, what is the appropriate mix of money spent on medical care and drugs in particular vs. palliative care and other social services," Smith tells AIDS Alert. "I think the next period will be one of trying to figure out the right balance even as treatment improves."
As an example, he mentions the dilemma faced by AIDS hospices, several of which have had to close because of the drop in AIDS mortality. The current system of AIDS care is based on the model of AIDS as a terminal disease. While that model is changing, "we can’t simply get rid of hospice care with the misguided impression that everyone is going to live now," he says.
The balance of resources for AIDS treatment vs. HIV prevention has always tilted in favor of treatment, and Smith, for one, has no illusions that new scientific developments will result in a major shift in funding. To the contrary, as AIDS programs beg, borrow, or steal to pay for new treatment regimens, prevention will have to fight harder to maintain the status quo. Indeed, the most recent report from the federal AIDS Drug Assistance Program working group estimates that cost of AIDS drugs in the United States for the next fiscal year will exceed $500 million, and that the current budget for the program, which provides treatment for uninsured patients, will be exhausted halfway through the year.
"If anything, the social forces backing treatment, which have always been stronger, are all the more strengthened by these developments," he says. "We saw the same thing with AZT many instances where people said exclusively, Let’s take this money we have been spending on prevention and spend it on AZT instead.’ Those involved in HIV prevention probably ought to use this occasion to take a hard, close look at how we are spending the current money as opposed to thinking this is an era in which we are going to get dramatic increases in funding."
Noting that HIV prevention research already is underfunded, Cates argues that a greater investment both nationally and internationally is needed for programs that can diagnose and treat people early in infection.
"To the extent to which we can promote either post-exposure prophylaxis or early viral confirmation of acute or early infection and get antiretroviral treatment to individuals as quickly as possible, that will have a two-fold effect of improving their prognosis, and also, we hope, of reducing transmission in that most crucial interval of primary infection," he says.
A group of physicians in Seattle already has begun debating the merits of using combination antiretroviral drugs as a "morning after" treatment for victims of sexual assault and accidental exposure to HIV through sex and drug use. Post-exposure prophylaxis already has been provided to two Washington state women raped by HIV-infected men.
In a recent review of sexual transmission of HIV, researchers at the University of North Carolina in Chapel Hill conclude that "breaking the chain of transmission during the period of primary and early infection is potentially the most effective intervention. Furthermore, the early detection of infection affords an opportunity for antiretroviral therapy to reduce viral burden, which may both improve the prognosis and reduce infectiousness."1
The review authors also point out that new approaches are needed for early detection of infection, such as promoting HIV home testing, using viral-load testing to detect primary infection before patients have seroconverted, and educating physicians about primary infection symptoms.
Renewing old debate over HIV reporting
While the possible advantages of treating during the acute infection phase are intriguing, Smith points out that the nature of HIV, with its long asymptomatic period and pressures of denial, puts heavy constraints on the number of primary infection cases that will be identified. Yet there are epidemiological reasons for trying to get closer to the front end of the epidemic, especially as the rate of AIDS cases declines and the epidemic may falsely appear to be waning, says Patricia Flemming, PhD, assistant director of AIDS surveillance for the CDC.
"What has kept the epidemic on the radar screen in terms of resources for patient care, Ryan White money, Medicaid, has been the shape of the AIDS curve. We are now looking at a slowing of the rate of increase of AIDS and declines in deaths pretty much across the board," she says. "As the new treatments affect the numbers of new AIDS cases, it will look spuriously as though the epidemic is on the decline. We really have to think about counting HIV better and working together to establish ways to monitor the prevalence of HIV."
That discussion has heated up with the HIV Prevention Act, a new federal bill that would require states to report HIV cases by name and initiate contact tracing of partners. The act, which has won support from the American Medical Association, has stirred up the debate over the need for confidentiality vs. the public health benefit of early detection of HIV. Critics of the bill argue that HIV name reporting will encourage people to avoid testing and treatment for fear of confidentiality breaches.
Whether or not the bill passes, Flemming says a growing coalition of government agencies, health departments, and advocacy groups are recognizing that the existing surveillance system must change to reflect the imperative for monitoring HIV prevalence, which, unlike AIDS surveillance, creates an epidemiological profile of where and among whom infection is occurring today.
"It is going to be an important year ahead of us," she says. "Regardless and independent of the [Patient Safety] bill, we all know we want to collect this information so relevant data can be provided for decision making."
Currently, 26 states report HIV infection by name and several others are considering adopting an HIV reporting system. Two states, Maryland and Texas, are experimenting with a reporting system that uses a "unique identifier," rather than a patient’s name, to assure confidentiality. A unique identifier system has serious limitations because it is difficult to trace a case back to a provider in order to gather the kind of information surveillance systems are now seeking, such as mode of transmission, risk factors, and what type of treatment is being offered.
This summer, the CDC will release results of a nine-state study undertaken at UCLA that will evaluate whether concerns about confidentiality breaches and testing avoidance are justified. The study has interviewed HIV patients in HIV name-reporting states on their experience with testing, counseling, and treatment, as well as on home HIV testing, Flemming adds.
At the same time, the CDC will have completed a pilot project in three states in which it will collect supplemental information beyond what is required in the CDC’s HIV case reporting form. Information will include a patient’s viral load and treatment regimen. Until now, the CDC has gathered this type of clinical information only from patients enrolled in clinical trials, who therefore are already under care.
"We wanted to go to a real-world surveillance system and look at how widespread treatment is in people newly coming into the surveillance system," she adds.
Is testing and screening structure inefficient?
As the care of patients moves closer to the time of initial infection, Smith says it makes sense to question whether the traditional division between HIV testing and treatment still makes sense either from a clinical or financial standpoint. Until two years ago, Congress required a portion of HIV prevention funding to be spent on counseling and testing. This apartheid was established for complex social, political, and economic reasons, and won’t be easily dismantled because there will be losers and winners, he adds.
"By setting up and maintaining a system that separates the testing from the care, we were creating a bunch of problems that we have then had to spend more money trying to solve," he says. "We test people across town in a facility that has no medical treatment capacity, and then we fund someone whose full-time job is to try to call around and figure out where they can make you a doctor’s appointment. No wonder people don’t come back for their results."