By Shari Margolese
HIV has been a serious health concern for Americans for over 30 years.
And yet only about 45 percent of Americans have ever had an HIV test.
Since HIV testing became available in the late 1980s, almost 1.8 million people in the United States have tested positive for the virus, and each year, there are about 50,000 new infections. As of 2011, the Centers for Disease Control (CDC) reports that there are more than 1 million people living with HIV in the United States.
Surprisingly, about one in six is unaware that he or she is HIV positive. The less surprising fact is that about half of new HIV infections are attributed to those who do not know their status.
The CDC recommends all Americans between the ages of 13 and 64 be tested for HIV as part of routine health care. According to Dr. Stacey Rizza, chair of the HIV clinic at the Mayo Clinic in Rochester, Minn., every person should have at least one HIV test in his or her lifetime.
The CDC recommends that all women who are pregnant or planning pregnancy be tested for HIV, and women in high-incidence areas or populations may wish to consider testing again in the third trimester.
Ideally, all patients who enter a health care setting should be asked if they have ever been tested for HIV, and if not, they should be offered testing. The CDC recommends annual testing for people who engage in unprotected sex or share needles and further recommends that sexually active gay and bisexual men may benefit from more frequent testing (every 3 to 6 months).
There are many reasons to consider having an HIV test. Research has shown that early diagnosis and treatment can improve health, extend life and help to prevent the further spread of HIV. People who are diagnosed early can find proper care and access life-saving treatment before HIV has a chance to cause irreparable damage to the immune system. In fact, exciting new research has shown that people with HIV who take their medication regularly can now hope to live full and healthy lives; they can also reduce the risk of transmitting HIV by as much as 96 percent.
Research has also shown that people who know their status are likely to take precautions to prevent the spread of HIV.
Why Aren't People Getting Tested?
Despite the benefits to knowing one's HIV status, many barriers exist to getting tested. According to Dr. Rizza, her research has shown that health care providers in the United States have “not done a very good job” of following CDC testing recommendations. Only about 60 percent of health care providers in the United States have offered HIV testing to their patients. Many physicians continue to offer testing based on risk factors rather than offering routine testing to all patients as recommended.
Naina Khanna, executive director of the Positive Women’s Network-USA and a woman living with HIV, strongly believes that testing should be universally offered and covered by insurance.
“Either women, or their providers, don’t think they are at risk,” she says. "I was discouraged from testing twice because they were using a risk-based testing strategy.” According to Khanna, many women get tested late in their HIV infection and many are never offered a test.
According to Dr. Rizza, many physicians are uninformed or misinformed about HIV testing recommendations. One of the most common misconceptions regarding HIV testing is that physicians must take time to have a patient sign a consent form. The truth is that most states actually no longer require written consent for HIV testing and a verbal consent is satisfactory.
Another barrier to increased testing is the lack of coordinated mechanisms in health care settings to test for HIV. Dr. Rizza's research highlights the importance of ensuring that all health care settings and physicians are aware of the CDC recommendations and implementing procedures so more people will have regular access to testing, recommendations for prevention and treatment.
Life After An HIV Diagnosis
Cristina Pena is living proof that there is life after an HIV diagnosis. The energetic 29-year-old, who is about to complete her master’s degree in health policy from University of California at Berkeley, was born HIV positive. As an ambassador for the Greater than AIDS Empowered campaign, she hopes to encourage women to take control of their own health and get tested.
“We need to turn testing into something that is a routine part of our lives, like going to the dentist or [women’s heath] appointments,” says Pena. She continues: “Of course, it’s best to protect yourself against HIV, but your life doesn’t have to end if you have an HIV diagnosis. It is important to know that there are many resources available to help you if you do test positive.”
Pena admits that a life without HIV would be easier, but adds: “I love my life. Yes, HIV makes things more complicated but regardless we can still have fulfilling and rewarding lives. We can go to school, have careers and families. Living with HIV should not remain as silent as it has.”
Breaking Down Barriers
While research on patient acceptance of HIV testing varies, some data suggests that patients may feel uncomfortable asking for or taking an HIV test. Many patients fear stigma associated with the disease if they test positive and worry that frequent tests may affect their insurance rating.
There is also a large group of patients that do indeed want to be tested for HIV; however, they believe they received a test as part of routine care when, in fact, they have not.
Darryl Cannady, executive director of South Central Development Center in Bluefield, W.V., offers rapid HIV testing as part of his regular programming. However, there are many barriers to reaching the community.
“There is a stigma attached to HIV and sex in general in rural areas,” says Cannady. “Without education people don’t know they are at risk.” Cannady says that “limited and non-existent” resources for HIV education make it difficult to engage in meaningful grassroots outreach to residents and health care providers to dispel existing myths about HIV.
Over the years, the United States has had some success with a number of testing initiatives that aim to reduce the number of people who are unaware of their status.
According to a recent CDC analysis, the proportion of adults who had ever been tested for HIV increased from 37 percent in 2000 to 45 percent in 2010. Although more Americans than ever before are getting HIV tests, the number of new diagnoses has remained relatively unchanged.
Khanna is hoping that the move to routine testing, which has allowed reimbursement for HIV testing, will help to improve the number of people choosing to have an HIV test. Additionally, linkage to care will likely be improved through the Affordable Care Act and provision of health insurance to people who have not qualified in the past.
In addition to government testing initiatives, community-based grassroots organizations and private industry also organize, sponsor and support HIV testing. One such program is the Greater than AIDS “I Got Tested” campaign, a program of the Kaiser Family Foundation and the Black AIDS Institute. According to Tina Hoff, the Kaiser Family Foundation’s director of health communications and media partnerships, this education and testing campaign is “all about unity.”
“I Got Tested” offers local communities an opportunity to be part of a broad, national campaign for HIV awareness and testing. As part of the effort, Greater Than AIDS and Walgreens are teaming up with health departments and local AIDS organizations to provide FREE HIV testing at more than 250 Walgreens stores from June 26 to June 28 to coincide with National HIV Testing Day on June 27.
Greater Than AIDS partnership with Walgreens began in 2011 and has continued to grow significantly each year.
“In the first year, we were in nine cities, 24 stores and we performed more than 800 tests,” says Hoff. “This year, we will be in at least 100 cities, 250 stores and we hope to conduct 8,000 tests.”
“Tests are provided free of charge by trained and certified testers,” she continues. “We ensure that each store has a suitable space to perform confidential testing and counselling.”
Providing tests in the local community drug store helps to normalize HIV testing. For Hoff, it is not just about the number of tests performed but more about the number of people that can be reached to help reduce stigma and plant a seed for future testing.
The Final Word: Know Your Status
Derrick Jordan agrees. Now 37, Jordan lost one of his best friends to AIDS at the young age of 19.
“We didn’t find out until after he became sick,” says Jordan. “About four months later he died and I was carrying his casket.” It was this defining moment in Jordan’s life that led him to become an ambassador for the “I Got Tested” campaign. Jordan says that HIV should be an “open topic” and that people shouldn’t be afraid to talk about sex.
According to Jordan, most friends from his home state of Mississippi don’t get tested.
“I think it is fear,” he says. “It is easier to live under the auspices that they are OK.”
He adds that stigma is also a barrier to testing: “Ten years ago they just automatically assumed you were gay, or on the DL (down low) and that, in and of itself, is a taboo.”
Jordan has been tested five times since his friend died.
“I had a test last December,” he says. “I was scared to see my own results, but I did it. And the next time I might be scared again, but I don’t think that fear should keep you from getting tested. “
In his new home of Atlanta, he says, “the atmosphere is different and gay life is celebrated, not frowned upon.” Jordan believes that this acceptance has led more people, regardless of sexual orientation, to get tested.
As for his role as an “I Got Tested” ambassador, he says, “Some people see my face on the posters and assume I have HIV or that I am gay.”
While it bothered him at first that people would make incorrect assumptions about his HIV status or sexuality, Jordan addresses the issue with confidence:
“I have been tested and I know that I don’t have HIV. Do you know your status?”
CDC National AIDS Hotline:
1-800-243-7889 (TTY/deaf access)
This article has been updated to reflect that Dr. Stacey Rizza is based in Rochester, Minn., not Rochester, N.Y. A previous version of this article misstated the name of the Positive Women's Network-USA as the U.S. Positive Women's Network. Language has also been amended to clarify Khanna's position on universal HIV testing.