And who could blame them? Little more than a decade ago, modern medicine offered barely any reliable treatments for people with advanced HIV disease. Despite a handful of experimental medications -- including a toxic new drug called AZT -- and treatments for opportunistic infections such as bacterial and fungal pathogens, rare cancers, and blinding microbes, doctors could not effectively control a torrent of HIV replication, which slowly but effectively destroyed the immune system of virtually everyone it infected.
When saving lives became elusive, AIDS workers, doctors, and volunteers strived to helped people die with dignity.
All that changed in 1996. For hundreds of thousands of people living with HIV/AIDS in the Western Hemisphere (and elsewhere in instances of personal wealth, charity, and government action), powerful, new drug combinations began to stop death in its tracks. Initially lauded as "the end of AIDS," combination therapies, along with revolutionary new ways to diagnose and measure HIV, are nothing short of a modern miracle. In the last decade, big pharma and government scientists have developed more than 20 antiretroviral agents and dozens of sensitive, new diagnostic tools to detect even trace amounts of HIV and effectively monitor its presence in the blood.
People living with HIV/AIDS who stand to benefit from these rapid medical advances have rallied industry, their governments, and anyone else who would listen in order to counter the status quo and save their lives.
But, to the dismay of many, prioritizing medical care is a far cry from actually guaranteeing healthcare for all who need it. Moreover, the push toward medical interventions is casting doubts upon the relative importance of government-offered support services and long-cherished patient rights, such as medical privacy, counseling, and informed, written consent to testing.
The stakes are especially high this year because pressure on the program has never been greater. At least 1.1 million people are living with HIV/AIDS in the U.S. -- more than ever before. According to the Institute of Medicine, only about half of the nation's HIV-positive population receives regular healthcare services. Factors such as poverty, lack of insurance, depression, housing instability, homelessness, substance abuse, and other chronic medical conditions, such as hepatitis, affect large numbers of CARE Act clients. Meanwhile, federal funding available to the CARE Act has steadily declined over the past five years, with the exception of ADAP. But even ADAP remains woefully under-funded with nearly 1,000 clients in nine states languishing on waiting lists. At least nine other states have needed to institute cost-containment measures.
With conventional wisdom on Capitol Hill predicting even leaner funding years ahead, in-fighting has erupted among some HIV/AIDS advocates, with rivalries forged along rural vs. urban interests, state vs. city interests, medical providers vs. support service providers, etc.
Recommendations released in 2005 by the Bush administration call for a concentration of CARE Act funds (75%) on "core medical services," ostensibly signaling waning support for critical transportation, housing, case management, and other nonmedical services. The plan would diminish the role of consumer input by making Title I planning councils optional, and would deduct funding from states with Title I cities in order to boost Title II grants to less populous states. The plan seems to presume that the CARE Act is already adequately funded but that dollars are overly concentrated in big states. At the very least, the plan predicts no significant funding increases in years to come. In February 2006, U.S. Senator Tom Coburn, MD (R-OK), introduced legislation codifying the administration's plan into legislative language.
Thankfully, a less draconian proposal has emerged from a delicate negotiation brokered by a bipartisan group of House and Senate members who control health legislation. House and Senate votes on this bill are expected by August or September, with a final draft going to President Bush by the end of 2006.
Clients of CARE Act services will notice differences in the program by the end of 2007. The new law will require local and federal officials to concentrate CARE Act funding on "core medical services," which will undoubtedly shrink the availability of funds available for support services, such as food and legal. Planning councils will be required in only 20 cities with the largest HIV/AIDS epidemics (51 councils exist currently).
Less populous states, including states that currently have ADAP waiting lists, should receive desperately needed funding increases, which is the good news. Without significant new funding (highly unlikely), other jurisdictions will shoulder funding reductions. In fact, the bill caps annual funding increases for the CARE Act at no more than 4%, well below the rate of medical inflation.
In addition, all states will be required to provide a minimum list of antiretroviral medications to clients as part of their ADAPs. Without assurances adequate funding will follow, states and local communities will likely be forced to ration healthcare, including access to drugs, and significantly scale back support services.
The routine offer of HIV testing, as part of a basic healthcare visit, is a laudable goal and one that has been widely endorsed by community groups and advocates for years.
Of concern to advocates, however, are recommendations to forego pre-test counseling and informed written consent to HIV testing. The CDC will instead recommend that providers include HIV testing in their standard consents for healthcare or obtain oral consent to testing. Many of the nation's physicians who specialize in HIV medicine are likely to adopt the recommendations in responsible ways by expediting counseling and consent, and assuring that everyone tested is aware they are being tested and afforded an explicit chance to decline. One fear, of course, is the opportunity for abuses, particularly among healthcare providers without sensitivity to HIV issues who may not bother or care if people know they are being tested for HIV.
CDC argues that routine, uninformed testing procedures are needed to overcome barriers to testing acceptance. Officials also say routine offers of testing will lessen the stigma surrounding HIV.
One can easily imagine more people being tested if counseling and informed consent were eliminated. It's not clear that talking about HIV or eliciting consent inhibits anyone from accepting testing, but both requirements may likely inhibit some healthcare providers from offering it. In fact, informed written consent and pre-test counseling is required in many states by law or regulation.
While routine testing may likely decrease stigma associated with HIV testing, persistent HIV/AIDS stigma -- unfortunately -- is likely to prevail for some time to come. In addition, stigmatizing attitudes, behaviors, and beliefs feed on ignorance and misinformation. Failure to educate people on the basics of HIV/AIDS -- including the fact that HIV is not transmitted through casual contact -- may expand instead of contract stigma in our society.
Ironically, as the CDC recommends less HIV/AIDS talk in healthcare settings it is expanding the battery of questions HIV prevention providers are required to ask and record every time they interact with a client.
A controversial new system called Program Evaluation and Monitoring System (PEMS) is being implemented to track minute details about the sex and drug use histories of clients served by HIV prevention organizations. For people living with HIV, who may receive counseling on disclosing HIV status and adopting risk-reduction behaviors, answering such sensitive questions carries the added risk of self incrimination. Sexual contact without disclosure is a criminal offense in many states; provider charts could be subpoenaed in criminal proceedings.
The CDC has also prevailed in requiring states to adopt name-based HIV surveillance systems or risk losing millions in federal funds, including CARE Act funds. Alternate code-based systems, developed to give clients added assurances to accept HIV testing, have been maligned by CDC as cumbersome and ineffective.
Unfortunately, people continue to lose their jobs, housing, and support networks from authorized and unauthorized disclosures of HIV status. Because of persistent stigma, HIV remains as much a social disease as a medical condition. Our global responses to HIV must remain comprehensive and tailored to address both the social and physical manifestations of the pandemic -- and continue to involve people living with and at-risk for HIV in every facet of a united response.
A real plan to fully cover the care, treatment, and support service needs of people living with HIV/AIDS would go a long way in reducing stigma and reversing the course of the pandemic.