News 2006

STATEMENT: National HIV Testing Day

Today is the 12th National HIV Testing Day. This annual campaign, led by the National Association of People with AIDS, urges us to recognize and act on one of the AIDS epidemics great truths: What we dont know can kill us. (Click here to find a testing site near you.)

The U.S. Centers for Disease Control and Prevention estimates that from a quarter to a third of the estimated 1.2 million Americans living with HIV today dont know they are infected. While broad race-specific data is not available, targeted studies suggest this is yet another challenge that disproportionately impacts African Americans. In one CDC study, nine out of 10 Black gay and bisexual men who tested positive didnt know they were infected.

The CDC, citing studies that show people who know they are HIV positive are likely to protect their sex and drug-using partners, has launched an aggressive HIV-testing campaign. In last week's edition of the agency's weekly national-health report, CDC announced that it distributed 790,310 rapid-test kits to 230 organizations in 37 states between late 2003 and the end of 2005. Nearly 400,000 HIV tests were conducted with those kits, leading to the discovery of 4,650 previously hidden infections.

Meanwhile, in Washington, D.C. -- where 82 percent of those living with HIV are Black -- local health officials have launched a massive campaign to get every resident aged 14 to 84 tested. The city plans to distribute 80,000 rapid-test kits to care providers and agencies serving people particularly at-risk for HIV by year's end.

The Institute applauds these efforts to get more people into testing and, thereby, into healthier lives.

However, as public health rightly ramps up testing outreach, it must do so with forethought, understanding that in many Black communities HIV remains a highly stigmatized disease. That means it is not nearly enough just to tell someone they are positive; testing must remain closely coupled with counseling so that people both know what it means to be positive or negative and get the help they need to live healthily with that knowledge.

The CDC's pending revisions to its HIV-testing guidelines are a cause of concern for Black America, because they limit our ability to get the most out of testing.

The guidelines, released for public comment in March, have the laudable goal of integrating HIV testing into regular medical care. They wisely urge care providers to offer HIV tests to all patients aged 13 to 64. But they also dangerously loosen the procedures for obtaining a patient's consent to be tested by getting rid of the need for written authorization. And while the new guidelines continue to stress the importance of counseling, they no longer require that counseling be linked to testing.

HIV literacy remains disturbingly low in many Black communities. Stigma remains depressingly high at least in part as a result of that information gap. As we push for more people to learn their status, we must not simultaneously abandon our commitment to education and support that has proven crucial in the past.

As important as getting tested for HIV is, a test alone is not prevention. When a patient gives active consent and discusses the details of HIV at the time a test is given, that person is more likely to understand what the results mean and more likely to take important steps toward learning to live with the virus, including changing sexual and drug-using behavior and seeking treatment. Communities that now have fluency and understanding of HIV owe it in part to the information they gained while accessing services in healthcare settings; those facing today's epidemic need and deserve the same help.

Additionally, experience worldwide has proven testing cannot succeed without access to treatment. In recent years, our already anemic commitment to providing treatment for all has further waned. Medicaid is withering from lack of resources and a dearth of ideas for meaningful reform. Uninsured people with AIDS linger on waiting lists for medications throughout the country. And free or subsidized-cost care providers nationwide report desperate resource shortages.

Whether it be counseling or treatment, when we encourage more people to learn their status, we must also ensure they are able to do something with the knowledge they gain. HIV testing is about accountability and responsibility; these are critical components in the fight against HIV/AIDS, for both individuals and governments.

Black AIDS Institute Report || June 2006

African-American Leaders issue national call to action and declaration of commitment to end AIDS epidemic in Black America

In Commemoration of 25th Anniversary of the First AIDS Diagnosis in United States, Black Leaders Release National Report with Recommendations to Mobilize Efforts

NEW YORK (June 5, 2006) – In commemoration of the 25th anniversary of the first diagnosed cases in America of what has become known as AIDS, Black Leaders from multiple sectors of the community – elected officials, civil rights, entertainment, media, and faith – issued a call to action and declaration of commitment to end the AIDS epidemic in Black America. This historic presentation of united leadership took place today in a press conference hosted by the New York-based Open Society Institute.

“In 2006, AIDS in America is a Black disease,” said Phill Wilson, Executive Director of the Black AIDS Institute. “The only way for AIDS to be over in America is for AIDS to be over in Black America, and the only way to stop AIDS in Black America is for Black people to take ownership of the disease and mount a mass Black mobilization.”

Over a million Americans are living with HIV today – nearly half of them are Black. Yet, national policymakers have lost focus. Federal funding for domestic AIDS care programs has remained largely flat since 2001. Approximately 54% of the new HIV/AIDS cases diagnosed in the U.S. are Black. Among women, Blacks account for two-thirds of all new infections. And recent Centers for Disease Control and Prevention studies estimate nearly half of all Black gay and bisexual men in some of America's urban centers are already infected.

“For Black America, the moment of truth has arrived,” said actor Danny Glover, a long-time AIDS activists and humanitarian, “If we are to survive the AIDS epidemic, we are going to have to gather all of our resources and marshal them for the political struggles that lay ahead.”

With that mandate in mind, the gathered leaders are calling on all sectors of Black America – from individuals to political, religious and cultural leaders – to commit to taking action against HIV/AIDS by engaging in a coordinated campaign to renew national commitment and focus around the issue. “We’re calling on all major Black organizations to make fighting AIDS a top priority by setting concrete measurable goals and real deadlines,” added Glover.

Along with Glover, other key figures also lending support to the effort at today’s press conference included Bruce Gordon, President – NAACP; Rachel Guglielmo, Project Director – Public Health Watch, Open Society Institute; Congressman Charles Rangel (D-New York); Kelli Richardson Lawson, Executive Vice President – Corporate Marketing, BET Networks; Rev. Edwin Sanders, Metropolitan Interdenominational Church; Dr. Gregory Robeson Smith, Mother AME Zion Church; Donald Bowen, Senior Vice President – Programs, National Urban League; Congressional Delegate Donna M. Christenson (D-U. S. Virgin Islands); George Curry, Editor-in-Chief, National Newspaper Publishers Association (NNPA); Keith Boykin, Host – BET J Network Talk Show “My Two Cents”; Jerry Lopes, President – Program Operations & Affiliations, American Urban Radio Networks; Sandra Goodridge, Director – Health Quality of Life Programs, National Urban League; and Pernessa Seele, AIDS Activist and Founder – Balm in Gilead.

From the Black Press

By George Curry

WASHINGTON (NNPA) – Intellectually, Phill Wilson had it all figured out. As a Black, gay man living in Los Angeles during the 1980s, he presumed that he had contracted AIDS. Wilson and other anti-AIDS activists glossed over the issue by telling one another: Assume you have AIDS and behave accordingly.

But Wilson, an AIDS counselor with several government agencies, would learn for sure that he had contracted HIV when, at the age of 27, he decided to get tested.

“I thought I should take the test so that when I talked to people, I could tell them what it was like to take the test,” recounts Wilson, now executive director of the Black AIDS Institute in Los Angeles. “I took the test, I assumed that I was positive, and I thought I would go on the way I had been going and I would be a better counselor or advocate for having taken the test.”

In real life, it wouldn’t be that simple. He would be right about being HIV-positive, but wrong about how he would react to the news.

“I remember leaving the testing facility and just being stunned, not quite knowing why I was stunned,” Wilson says. “I remember getting into my car and having a panic attack, just thinking: ‘I am going to die.’ And it felt like I was going to die then and there. I sat there in the parking lot for a half-hour, crying.”

It didn’t help that Wilson had seen how AIDS ravages the body and those images flickered before him.

“There were all these horrible images of people I had seen die,” he remembers. “That was going to be me.”

But it wasn’t.

“I found out that I was HIV-positive at 27 and I didn’t think 30 was an option,” says Wilson, who has full-blown AIDS. “So, to be 50 is amazing.”

Phill Wilson is an amazing person. He’s throwing a big birthday bash this Saturday in Los Angeles. And it’s not your typical birthday party.

“I don’t know what the traditional gift is for someone on their 50th birthday – let alone surviving for a quarter century with a life-threatening disease – but I do know what I want,” he said in the letter of invitation. “As you know, I have dedicated my life to the eradication of HIV/AIDS, particularly in Black communities. So as a birthday present to myself, I’ve committed to raising $250,000 for the AIDS organization nearest and dearest to my heart, the Black AIDS Institute.”

The Black AIDS Institute, founded in 1999 by Wilson, is the only HIV/AIDS think tank that focuses exclusively on AIDS among African-Americans. And its birth came out of a near-death experience.

“In 1996, I got very, very sick,” Wilson says. “My doctor basically had given me a matter of days to live. I was unconscious and I was in intensive care at Kaiser Permante. Everyone thought that I was going to die. When I came out of that, I could not work like I had been working, which is basically how I work today,” the workaholic explains.

“By 1999, there had been a lot of progress made in the Latino community and among women, but there had been very little progress made in mobilizing traditional Black institutions. It was clear to me that the only way to stop this epidemic in Black America was for our institutions to take ownership of the disease.”

More than anyone else, Phill Wilson has energized and mobilized the Black community, calling out gays and straights, encouraging Black churches to become more active, getting the Black Press to devote more coverage to AIDS, and persuading national civil rights leaders to take a more active role in fighting the epidemic.

“It’s amazing the changes that have been happening in areas that we’ve been working,” Wilson said. “Over the past three years, our work with the Black media has been remarkable; we finally made a huge breakthrough with civil rights organizations, we’ve had an increase in the number of celebrities taking on HIV and AIDS and we have a very engaged college program.”

By Kai Wright

The U.S. Centers for Disease Control and Prevention is in the final stages of revising federal guidelines for the HIV testing process, aiming to "normalize" HIV testing by streamlining the process of gaining consent to test and doing away with recommendation that testing include counseling.

In a March 8 letter, published by Housing Works' AIDS Issues Update, Bernard Branson of the CDC's Division of HIV/AIDS Prevention solicits public comment on the proposed changes by March 29. A public comment period is the standard final step before federal regulatory changes take effect. (Click here to read the letter)

The new CDC guidelines would significantly streamline the HIV testing process in an effort to get more people tested. (Click here to read proposed guidelines.) The agency estimates a quarter to a third of the over one million Americans believed to be HIV positive today don’t know they are infected.

“The overarching goal is to maximize opportunities for those persons who are currently unaware of their HIV infection to learn their HIV status earlier,” Branson writes in his letter requesting public comment. He cites studies that show “with current HIV testing practices, many persons with unsuspected HIV infection currently access health care services, but because they are not tested, their infection goes undiagnosed.”

To combat that fact, the new guidelines would urge that HIV testing become an “opt-out” process in all health care settings – meaning, all patients should automatically be tested unless they specifically ask not to be. The tests should also become a standard part of the bevy of prenatal tests given to pregnant women.

The guidelines would still urge that patients be notified about the test before hand, so that they may have the chance to turn it down. However, it would no longer be necessary to obtain written consent to conduct an HIV test.

Additionally, the guidelines would no longer tie HIV testing with counseling about the virus. Currently, the agency recommends that anyone getting an HIV test first undergo brief HIV prevention counseling sessions, which determine the person’s risk, offer prevention information and discuss the meaning of the test’s outcome. While the CDC would continue to urge that patients have access to such counseling, it would no longer recommend that it be linked to the testing process.

The CDC’s recommendations are not legally binding upon state and local laws and regulations, but they heavily influence how local officials design their rules, in part because of the implicit threat of jeopardizing federal funding by failing to comply. Some states have already begun altering their procedures. Most notably, New York is currently considering many of the same proposals, with health officials from the administration of New York City Mayor Mike Bloomberg aggressively pushing new state laws mirroring the CDC’s proposed new guidelines.

But critics argue that consent and counseling requirements are key safeguards in the testing process. Stigma surrounding HIV remains strong in many Black communities in particular, and those that have opposed streamlining the consent process fear it will actually drive people away from testing. Moreover, they argue, counseling serves not only to prepare patients for the test results, but also to educate them about the basics of HIV prevention and treatment. Particularly among African Americans, HIV literacy remains dangerously low. The National Association of People With AIDS’ Paul Feldman told Housing Works’ AIDS Issues Update that changing the guidelines “misses a golden opportunity" to fix that problem.

“HIV continues to be highly stigmatized,” says Feldman. “An HIV test is not like a basic blood count or other lab tests. The results can be life-changing, and people need to know what they're getting themselves into. A general consent that you sign at the front desk on the way into the hospital or doctor's office does not do the job.”

Branson takes these arguments on in his March 8 letter, stating that CDC “anticipates that normalizing HIV screening in health care settings will help to eliminate the stigma associated with HIV testing.”

The CDC requests anyone wishing to submit comments on the proposed new guidelines email the agency at This email address is being protected from spambots. You need JavaScript enabled to view it.. All comments must be submitted by March 29.