AIDS test consent at issue in Mass.
Federal push to ease rules could cost state
Massachusetts is resisting a year-old push by federal health authorities to make getting an HIV test as easy as being screened for cholesterol or diabetes, arguing that AIDS remains so freighted with social stigma that a test should not be done without a patient's specific written permission.
The state is one of 10 that continue to require written consent before an HIV test is performed, even though the US Centers for Disease Control and Prevention last year described such requirements as a barrier to testing. The CDC said the general consent that patients give for other medical screenings should cover the AIDS test as well.
It is estimated that one-quarter of the 1 million people infected with HIV in the United States are not aware they carry the virus, so they may be unknowingly spreading the disease.
Public health authorities in Massachusetts said they share the CDC's goal of making tests for acquired immune deficiency syndrome more routine, but believe they can accomplish that without lifting the written consent rule by conducting an additional 11,300 tests in community health centers, family planning clinics, and substance abuse treatment facilities over the next two years.
The decision to keep written consent as a requirement has potential financial implications. If Massachusetts identifies new cases of HIV more slowly than states that adopt more routine testing, it could cost the state federal dollars.
Dr. Julie Gerberding, director of the CDC, said in an interview that states have a strong incentive to identify patients early in their infection - for financial and medical reasons.
"We're now at a point where we just need to normalize this [testing] and do everything we can to get the undiagnosed people into treatment," said Gerberding, who once ran an AIDS testing service at San Francisco General Hospital.
For more than two decades, discrimination associated with AIDS compelled some states, including Massachusetts, to treat testing for the human immune deficiency virus as a special category of medical screening. The testing policy reflected the view that AIDS was singular, a lethal, sexually transmitted disease framed by cultural and medical complexities that distinguished it from other illnesses.
With the arrival of potent drug cocktails, AIDS has been transformed in the developed world into a chronic, manageable disease, with many patients having long lives. So the dispute over HIV testing has exposed a deeper divide about AIDS in America: Should it continue to be regarded as something exceptional, with policies, resources, and attention distinct from other conditions?
"We want the state to treat HIV like other communicable diseases," said Dr. B. Dale Magee, president of the Massachusetts Medical Society. "We can do tests on people for tuberculosis, for gonorrhea, for syphilis, and we do not have to obtain written informed consent. The state should treat HIV the same way."
But state officials and representatives of advocacy groups maintain that the stigma of AIDS still sears deeply and that Massachusetts should continue requiring written, informed consent - and the discussion it provokes - before a test.
"We are concerned that if some of the higher-risk people hear that HIV testing will be done without their consent, they may avoid going in for medical care at all," said state Public Health Commissioner John Auerbach, who was director of the state's HIV/AIDS Bureau in the 1990s. "That was some of the original fears in the early years of the epidemic."
Auerbach said he might reconsider his position if keeping the written consent law costs the state substantial amounts of money.
Last year, Congress changed the way it calculates federal money for AIDS services under the Ryan White Care Act, for the first time including in the funding formula patients who are infected with HIV but don't have symptoms. Massachusetts, which gets $19.5 million a year in federal AIDS funding, could lose out under that formula, though it is unclear by how much.
When Gerberding announced the AIDS testing recommendations last September, the policy shift represented one of the most sweeping attempts to slow the epidemic's march. The agency called for Americans ages 13 to 64 to be tested at least once for the virus.
The new policy was born of years of frustration. Disease specialists estimate that 250,000 Americans are infected with HIV but do not know it, and, over the past decade, there has been little success in reducing the number of people newly diagnosed with AIDS each year. It is not uncommon for people to carry the virus for 10 years or longer and not be aware they are infected.
When those people finally get diagnosed, the virus has done years' worth of destruction. About 40 percent of US patients who test positive for HIV develop AIDS within a year of their diagnosis.
"The HIV doctors are tired of feeling like they're working in a Third World country" where patients rapidly progress to AIDS, said Christine Lubinski, executive director of the HIV Medicine Association, an organization of AIDS specialists. "It's not just that there are tons of people walking around the US who are infected and don't know it and are transmitting to others. It's that people are presenting too ill to fully enjoy the benefits of life-saving medications."
AIDS specialists at the CDC determined that the best way to identify people infected with the virus - and at the same time to remove some of the stigma surrounding the disease - was to implement routine testing.
In the past, screenings had been largely confined to members of groups known to be at high risk for carrying HIV, such as gay men and injecting drug users. But by so narrowly targeting AIDS tests, CDC specialists said, cases were being missed - and doctors were hesitant to single patients out for testing.
The CDC's decision to recommend routine testing and the elimination of written consent drew significantly on the agency's experience with universal HIV testing for pregnant women, said Dr. Bernard M. Branson, an AIDS specialist at CDC. In the dozen years since expectant mothers have been widely tested, the number of babies being born with the virus has plummeted 95 percent, Branson said. At the same time, pregnant women have told interviewers they feel more at ease being tested if they know it is being offered to every woman.
The CDC guidelines stress that testing should be voluntary and that patients should be alerted that they will be screened for the disease, much as they would be told they were having their blood drawn for a cholesterol reading.
But Ben Klein, AIDS Law Project director at Gay & Lesbian Advocates & Defenders, said the guidelines fail to consider the realities of today's medical care.
"For doctors who are overworked and in busy healthcare settings . . . there's going to barely be a discussion," Klein said. "What has been really important about written informed consent is it's really not about the testing process alone. It's the beginning of a process and a relationship between the doctor and the patient that goes beyond testing."
Since the CDC made its recommendation last year, states have responded in a variety of ways. About a dozen have passed laws to come into compliance with the federal recommendations.
"We're all working for the same thing. We all recognize the goal of this is to get more people tested," said Murray Penner, an official with the National Alliance of State and Territorial AIDS Directors. "But what works in one state may not work in another."
Smith can be reached at stsmith@globe.com. 