HIV/AIDS - The Right To Know

The Right to Know:
HIV/AIDS and Health Literacy

It has been more than 27 years since we first learned that a specific virus, HIV (human immunodeficiency virus), was the causative agent of AIDS (acquired immune deficiency syndrome) and responsible for causing a worldwide pandemic; recently, Nobel prizes were awarded to French researchers, Luc Montagnier, Françoise Barré Sinoussi and Harald zur Hausen for their seminal work in the discovery of HIV. (Of note: Luc Montagnier has acknowledged the work of American, Robert Gallo for his work on HIV.)

According to the UN, approximately 33 million people are living with HIV and AIDS, and the number of new cases is growing, apparently at a greater rate than previously thought in both developing and the developed countries. For example, up until now it was believed that there were 40,000 new HIV infections annually in the US. But, based upon new blood tests which can differentiate between old and new infections, and more sophisticated statistical methods, current estimates from the Centers of Disease Control and Prevention (CDC) place the number at 55,000 (around 40% higher) and this seems to have been the case for the past several years. Using the new techniques, the New York City Department of Health and Mental Hygiene (NYC DOHMH) estimates that the number of those newly infected with HIV in New York City has been grossly underestimated; in 2006, the virus was shown to infect 4,800 persons, at a rate three times greater than the national rate.

Black and other ethnic minority members are disproportionately represented in new cases of HIV and AIDS; while only 13% of the US population is African American, they account for 50% of all new HIV cases, several times the rate seen in the white population; sixty-six percent of infants born with HIV in the US are black. Black women now represent 66% of new AIDS cases compared with 17% for white women, and 16% for Hispanic women. This represents a significant increase since 1987 when JAMA (The Journal of the American Medical Association) reported the incidence of HIV/AIDS in 1986 as 6.7% for all women in the US, 51% of whom were black, and 20% Hispanic.

In large US cities such as NYC, LA and SFA Blacks living with HIV and AIDS in NYC are 2 ½ times more likely to die from their disease than whites. While vulnerable groups of all races/ethnicities including the homeless, injection drug users (IDUs), and those who engage in unprotected sex remain subject to the ravages of HIV and AIDS, being Black puts them at even greater risk than their white counterparts. Moreover, despite the advent of HAART (highly active anti-retroviral therapy) in 1996, a range of co-morbidities continues to plague those living with HIV and AIDS such as liver disease (hepatitis B, and C), non-Hodgkin’s lymphoma, TB, mental illness, malignancy, malnutrition and alcoholism. In addition, socio-economic factors such as poverty, unemployment, stigmatization, undocumented immigrant status, language barriers, a history of incarceration, sexual preferences such as men who have sex with men (MSM), and lack of, or failure to access medical care and low health literacy put these populations at even greater risk of HIV and AIDS.

And, while low health literacy re HIV/AIDS is prevalent in vulnerable populations, it is found at all levels of income and education:

In the early 80s, I attempted to recruit a prominent, upper Eastside ob/gyn to speak at a meeting on “Women and AIDS.” Pointing out of his office window to a tree-lined street with its pricey townhouses, and idling limousines he allowed as how his patients ‘don’t get AIDS,’ and questioned why he should speak why at the meeting. At the time, it was erroneously believed that HIV infection was primarily contracted by homosexual men, and male and female sex workers through unprotected sex. We now know that blood and blood products can also carry HIV which can then be transmitted via transfusion or needle-stick injuries, or through maternal transmission, and that income and level of education, race/ethnicity and sexual preference are not barriers to HIV infection.

A decade later, I enrolled in a doctoral level biology course and was asked to write a paper on two ‘viruses’ chosen from a list that did not include HIV. When I questioned my instructor, he opined that ‘not enough’ was known about the virus, and, asked whether ‘HIV would be a more suitable topic for a sociology course.’ I could not understand his naivety, given that the seminal work isolating the HIV as the causative agent of AIDS, and the elucidation of the structure of HIV had already been accomplished.

Just a year ago, a man accused of raping and infecting three women with HIV used as his defense the ridiculous notion that HIV cannot be transmitted through vaginal sex. Though a preeminent scientist supported his claim, the Court ruled in favor of the three victims.

It is therefore a paradox that while NYC has the greatest number of new HIV/AIDS cases in the country, as well as the largest population of those living with HIV and AIDS, basic knowledge of the disease, its causes, diagnosis and remedies seems to elude us at every level of society.

Moreover, the epidemic is disproportionately affecting the black and other ethnic minority community members. In light of this, the take home message for those concerned with human rights, is to pay heed to a disease that is, in the main, preventable, but nonetheless increasing in prevalence, emerging into new geographic areas and populations (in the US, women of color comprise the fastest growing population), and for which there is no vaccine or known cure.

It is simply incomprehensible that almost 30 years into the HIV/AIDS pandemic that not enough has been done to stem the tide of new cases, and properly address the problem through health education on care and prevention of HIV/AIDS. In addition, we need a new national plan to increase awareness of this dreaded disease. However, our taxpayer dollars seem to be headed elsewhere when one considers that the numbers of African Americans in the US living with HIV and AIDS is greater than those living with the disease in seven of the PEPFAR (President’s Emergency Plan for AIDS Relief) nations; at the 17th International AIDS Conference recently held in Mexico City, black leaders from the US called for the US to create a ‘domestic PEPFAR’ program.

One way to fight HIV/AIDS illiteracy is by keeping abreast of HIV/AIDS related information, and spreading the word through health education and community outreach programs.

Cynthia Racer, MA, MPH,
Past President American Medical Writers Association
(Metro NY Chapter);
Member: American Public Health Association;
Society for Public Health Education.