Despite national guidelines, private insurers, ER, federal and state agencies fail to routinely test for HIV

November 20, 2008

WASHINGTON, DC (November 20, 2008)-- While the U.S. AIDS epidemic simmers largely unnoticed by most Americans, a failure to widely implement routine HIV testing continues to fuel its spread, HIV researchers and experts said today. Almost 60,000 Americans were infected with HIV last year, and, nationwide, 50-to-70 percent of new sexually transmitted infections are spread by people who do not know they are infected. Guidelines issued two years ago by the U.S. Centers for Disease Control and Prevention (CDC) recommend that all Americans ages 13-64 be routinely tested in all healthcare settings. Now, data show that although such testing could save years of healthy life and limit the spread of HIV, they are largely not being implemented.

"With HIV, ignorance is not bliss. Those who are unaware of their infection cannot seek treatment, and are at least three times more likely to transmit the virus," said Dr. Veronica Miller, director of the Forum for Collaborative HIV Research. "Two years after the CDC recommended routine testing, initial successes show its potentially powerful impact, but major barriers keep it from being the national norm."

The Forum for Collaborative HIV Research convened a national summit on November 19-21, at which some 300 leading HIV researchers, health care providers, and policymakers shared new data on the advances and barriers to early, routine HIV testing, considered a key to slowing the US epidemic which now encompasses more than 1.1 million Americans living with HIV.

New Testing Data Show Missed Opportunity as HIV Spreads in U.S. New data show that prior to 2006, Emergency Rooms (ERs) tested patients for HIV at a rate of just 3.2 per 1,000 visits (or .32 percent). Of 2.8 million ER tests performed over 12 years, six percent were HIV positive - much higher than the national average of 0.17 percent of AIDS cases in the general U.S. population. Since then, the situation has improved only minimally, with some 50 to 100 out of 5,000 ERs nationwide routinely testing for HIV, according to Dr. Richard Rothman at the Johns Hopkins University Department of Emergency Medicine.

It is not only ER patients, which include large numbers of uninsured, but also those with full medical coverage from private insurance companies who are not getting tested, according to several studies. One study found that only 4.9 percent of plan members with a serious illness suggestive of AIDS were tested for HIV. The results came from a review of insurance claims for eight health plans in 2006, with a total of 7.8 million insured individuals.

A related study found that just 36 percent of members seeking treatment for sexually transmitted diseases--a high-risk group--were tested. A third study found that although drug treatment can prevent mother-to-child transmission of HIV, up to 41 percent of pregnant women were not tested for HIV, with rates varying by insurance plan.

And, although the prevalence of HIV among prison inmates is more than two and a half times that of the general U.S. population, most state and federal correctional facilities do not routinely test for HIV, instead testing based on perceived risk.

Veterans also have extremely high HIV prevalence. Existing VA regulations require written informed consent and documented pre- and post-test counselling. A recent nationwide study of VA hospitals showed that under these regulations, fewer than 10 percent of inpatients and fewer than 5 percent of outpatients were tested during the year ending Sept. 30, 2006.

But VA's testing regulations will soon change, according to Dr. Ronald Valdiserri, head of the Public Health Strategic Health Care Group at the Department of Veterans Affairs (VA). In October, President Bush signed a law that lays the basis for the VA to revise its regulations, thereby eliminating outdated HIV testing signature consent requirements, and the VA is working to revise its internal guidelines accordingly.

"The healthcare system is routinely missing critical opportunities to identify and treat HIV-infected individuals--in emergency rooms, doctors' offices, veteran's hospitals and prisons," said conference co-chair Dr. Ken Mayer, Director of the Brown University AIDS Program. "As a result, many patients are not tested until late in the disease, even when there are clear indicators of infection."

Late to Test, Early to Die

"The whole point of routine testing is to stop transmission and late entry to care," Miller said. "But new data show that late entry to care is a more serious problem than previously known and is costing years of healthy life."

Data show rates of late testing that are over 50 percent in many populations, rather than the prior national estimate of 40 percent. "Late testers" are those who develop HIV within a year of diagnosis--or are already sick with AIDS when diagnosed. This means their infection had progressed undetected for up to a decade.

"As individual institutions begin to screen for HIV, they are starting to catch the men and women who have fallen into the crevasses of the health system," Miller said.

In one ER, 93 percent of new cases had full-blown AIDS at the time of diagnosis; in another ER, 56 percent of patients had AIDS. A study of prisoners in South Carolina found that 59 percent were late testers, and in the VA Medical Center in Washington, DC, 100 percent of newly diagnosed veterans identified during the study were already severely ill with AIDS.

Furthermore, a recent study underscored the value of early, routine testing, showing that patients who started treatment earlier--when CD4 cell counts were below 500 rather than 350--had a marked benefit: a 70 percent improved chance of survival in each year that follows.

Barriers to Routine Testing

"When it comes to HIV testing, the health care system is stuck in the past," said Summit co-chair Dr. John G. Bartlett, of The Johns Hopkins University. "HIV testing started in 1985 when there was no treatment, a morbid death, an unrealistic fear of contagion and terrible stigma. Substantial barriers were developed to assure patients knew the consequences of testing. Now HIV is treatable, we have a test that takes minutes and costs ten dollars. Individuals benefit enormously from treatment, as does society."

Ongoing barriers to testing include obstructive policies by federal agencies and some states; a lack of funding, information, and trained staff; and the lack of a national reimbursement system for federal agencies. In addition, the people responsible for administering the test are not necessarily aware of the new guidelines and do not always support them.

For example, although numerous studies document that well over half of ER patients support routine testing, surveys of ER staff often show a majority oppose it. A survey of Emergency Department professionals from 40 institutions show the top two barriers as an increased burden on ER staff and lack of funding.

Individual Successes Point the Way Forward

Despite the barriers, Summit presenters described successes across a number of health care settings and jurisdictions.

A voluntary rapid HIV testing program in New York City jails increased testing from 6,500 to 25,000 inmates between 2004 and 2006. About 30 percent of men and 23 percent of the women who tested positive were previously undiagnosed. Of these, 90 percent were neither men who have sex with men (MSM) nor intravenous drug users, demonstrating the limited effectiveness of only testing those in high-risk groups.

ERs have experimented with ways to integrate testing in to the hectic pace of work. One Chicago hospital, for example, staffed its ER with two health educators, offering rapid testing to patients admitted for medical services. Over 15 months, nearly 2000 patients were tested, and 15 (0.8) percent were confirmed HIV-positive. All were linked to care, although one late-testing patient died during hospitalization.

City-wide testing campaigns in Oakland, California, Washington, DC, and New York City, have made significant progress, as have state-wide efforts in Florida and North Carolina. Innovative programs are reaching high-risk populations: In New Orleans, health workers have gone into bars and bath houses to test MSM, and mobile testing vans have reached Latino immigrant communities in the same city. Meanwhile, door-to-door testing in North Carolina, New York City and Pennsylvania has increased diagnosis.

In Washington, D.C., one group, Metro TeenAIDS, frequently goes to college campuses to persuade students to learn about their status. One of those involved in the effort is Chris Barnhill, 21, who tested positive when he was 16. He had been infected at birth, but didn't know it until he took the test.

"If I hadn't gotten tested, I would have gotten sicker and sicker,'' he said. "I wouldn't have known what was going on. I would have found out on my deathbed that I had AIDS, when it would be too late.''

State policies are also changing. While laws in 10 states remain incompatible with CDC guidelines, since 2006, at least 16 states have passed legislation conforming more closely to them.

"Model programs have demonstrated what is possible," Mayer said. "Now, it is time to move from isolated successes to a national movement. The barriers must be removed."
The Forum for Collaborative HIV Research is an independent public-private partnership whose mission is to facilitate discussion on emerging issues in HIV clinical research and the transfer of research results into care. It is comprised of international experts from government agencies, pharmaceutical companies, academia, advocacy and community organizations, and private foundations. The Forum is housed in the Department of Prevention and Community Health at The George Washington University School of Public Health and Health Services. For further information, visit:

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Forum for Collaborative HIV Research

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