AIDS in America
by Lauren Hasek
On December 1, 2011, the University of Pittsburgh honored World AIDS Day by offering free, confidential HIV testing to its students. Few showed up. A campaign targeted at global awareness and public health was stifled largely by fear and taboo. HIV testing in a university setting can be a powerful tool for breaking down social barriers if students recognize the importance in participating. Low turnout for this program is just one of many examples of the role stigma plays as one of the greatest obstacles in the way of raising awareness, a key component to stemming the spread of HIV/AIDS in the U.S. This article offers a brief introduction into how stigma has influenced the socio-political and medical progression of the HIV/AIDS epidemic in America.
The first cases of HIV/AIDS were diagnosed in the U.S. in June 1981. By 1987, the Department of Health and Human Services had banned any person with HIV from entering the U.S., designating it as a “dangerous contagious disease.” With this ban, the U.S. became one of only a dozen countries to make positive diagnosis a legal inadmissibility for immigration. Despite leading the world in its dedication to stemming the global AIDS pandemic, the U.S. had instituted a ban that represented a huge loss for human rights activists and a step back for global HIV policy.
In 1991, an attempt spearheaded by former President George H.W. Bush and the HHS to reverse this decision failed in Congress due to strong Republican opposition that argued severe public health risk and encouragement of homosexuality. While both the Centers for Disease Control and Prevention, and HHS, endorsed removing HIV from the list of “dangerous contagious diseases,” clinically unfounded misconceptions about transmission and its association with homosexuality allowed the ruling to stand.
In 2008, with hopes that lifting the ban would be a step towards ending the stigma against people with HIV/AIDS, former President George W. Bush initiated the bipartisan effort that would ultimately reverse the ruling. In 2010, President Barack Obama successfully lifted the 22-year ban, stating it was “rooted in fear rather than fact.” While the legislation was a huge symbolic success against HIV stigma, disconnect between the American public and awareness of the disease meant the lifting of the ban went all but unnoticed outside the realm of healthcare and human rights activists.
In 2012, the XIX International AIDS Conference (which has been held every two years since the onset of the global epidemic) was held in Washington, D.C., to celebrate the lifting of the ban. As the forum for the most recent developments in education, research, and policy, the conference played a key role in shaping international responses.
Holding the event in Washington, D.C., was also significant: not only was it the site of the new legislation, but there, 3.2 percent of adults between the ages of 15 and 49 are positive for HIV. This is the highest prevalence in the U.S., and notably a higher rate than the Democratic Republic of Congo, Ghana, Rwanda, Ethiopia and 28 other African nations.
The disease disproportionately affects men who have sex with men (who account for approximately three-fourths of male diagnosis), low-income urban populations, and African-American communities. These trends are preserved among the 1.2 million Americans currently living with HIV. By state, New York, Florida and New Jersey have the largest number of persons living with a positive diagnosis. African Americans account for 40 percent of AIDS-related deaths. Despite decreased death rates in some ethnicities, low access to health care in Hispanic/Latino communities has caused the impact of HIV to remain constant. Prevalence in the country’s poorest urban neighborhoods is more than four times the national average.
The demographics of the epidemic further complicate treatment. On a national level, the burden of the disease continues to tax a fragile health care system. The Organization for Economic Co-operation and Development ranks the U.S. fourth in the developed world in terms of socio-economic inequality. The gap between rich and poor continues to widen due to a scarcity of jobs and rising prices, particularly of food and health care. In a country where HIV/AIDS disproportionately affects urban African Americans and Hispanics, who statistically are most likely to have a disadvantaged socio-economic status, the disease will continue to spread regardless of monumental advancements in treatment and prevention.
Human immunodeficiency virus, or HIV, is a slowly replicating retrovirus transmitted through direct exposure to infected bodily fluids, including blood, semen, and breast milk. The virus targets helper T cells, macrophages, and dendritic cells for destruction. CD4 cells are a type of helper T cells largely responsible for cell-mediated immunity. Acquired immunodeficiency syndrome, AIDS, marks the point at which the HIV virus causes a marked reduction in CD4 (T) cells. AIDS defines notable impairment of immune system function and increased susceptibility to life-threatening opportunistic infections and viral-induced cancers. Without treatment, HIV progresses to AIDS within approximately 10 years of infection.
Just prior to the start of last summer’s conference, the Food and Drug Administration approved Truvada, a pill proven to effectively lower the risk of HIV infection by 42 percent in men who have sex with men, and 75 percent in heterosexual couples. The risk of transmission in the former is estimated to be 18 times higher than the latter, attributed largely to increased abrasions. Truvada has been used in the U.S. since 2004 to prevent HIV-positive patients from infecting their sexual partners, but the recent approval is a once-daily pill for healthy people who are at high risk of contracting HIV through sex. The mechanism of treatment involves blocking HIV-1 reverse transcriptase, the enzyme necessary for the virus to replicate, thus reducing the ability of HIV to take hold in healthy immune system cells. At nearly $14,000 a year, Truvada may become a luxury drug, out of reach for those in low-income urban areas that need it most. With the restructuring of Medicare or Medicaid, it is uncertain if state or national programs will cover treatment
Access to even the most basic health care remains a challenge across the U.S., particularly for HIV-positive individuals. Only a third of those tested positive have any form of health coverage and less than one-fifth have private health insurance. Consequently, approximately a third of patients known to have a positive status are not in care. Medicaid currently provides antiretroviral treatment free of charge, but only after an official diagnosis of AIDS. Early treatment delays disease progression by reducing viral load, which improves quality of life and reduces the likelihood of transmission. Although passage of the Affordable Care Act extends Medicaid eligibility to cover individuals with pre-existing conditions or chronic illness, its passage will not abolish the existing restriction on antiretroviral treatment.
Attempts to change social acceptance of the disease and improve outcomes of those infected have come primarily through understated policies. In 2006, the CDC recommended an “opt-out” approach to HIV testing, in hopes of reducing stigma and increasing screening. These new guidelines suggest an HIV test should be performed for all patients 13-64 years of age unless the patient specifically declines. This places the burden of refusal on the patient and removes the process of separate, written consent to receive the test.
This was an update to previous recommendations that only encouraged testing for “at risk” populations. Studies since the updated recommendations have found that many healthcare facilities are not implementing the guidelines, and those that do often see more than 75 percent of patients declining to be tested. Poor involvement in “opt-out” testing and programs such as Pitt’s free testing on World AIDS Day further highlight the power of stigma as a barrier to reducing transmission.
The face of HIV/AIDS in America is changing rapidly as new treatments are allowing patients to live longer, healthier lives. While the lifting of the travel ban marked a significant human rights victory, the HIV positive community in the U.S. remains poorly understood. The threat of HIV infection in America is often disregarded, perceived as an exotic disease, or as one restricted to select populations and the sexually promiscuous. In a country with a minute national prevalence (0.6 percent), education programs have remained basic, allowing stigma and fear to shape misconceptions. While the setting of the 2012 International AIDS Conference attracted much-needed attention to the “homegrown epidemic,” further reduction of discrimination is highly dependent on spreading awareness of the disease and its presence in the U.S.