In college, many of us were REM (the rock group, not the stage of sleep) fans, although, I must say I am quite fond of that as well. Eyes aflutter, loss of reflexes, and wild dreams run amok what’s not to like about REM sleep? Anyway, the quintessential college anthem for the 90’s was REM’s It’s the End of the World as We Know It (And I Feel Fine).
If you do not know the song, plug it into Pandora (or your music platform of choice) sometime. For obvious reasons relating to the turn of the millennium, it’s been a major New Year’s Eve party song. While attending this past year’s International AIDS Conference and other HIV-related meetings, that song has been my ear worm, playing and replaying in my head. Except, I often substitute in one word “it’s the end of AIDS as we know it” or so say Hilary, Bill, Kathleen, Obama and maybe even Lenny Bruce and Leonard Bernstein.
But perhaps we are experiencing the increasingly recognized phenomena of irrational exuberance, and undeniable successes (which no doubt should be celebrated), are perhaps prematurely settling a pair of rose-colored glasses over our eyes. Therein lays the crucial difference between hope and optimism. The Czechoslovakian playwright and political dissident Vaclav Havel captured this best when he observed, “Hope is definitely not the same thing as optimism. It is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out.” We are certain we want to live in a world without AIDS, and recent strides towards the goal should indeed fill us with hope that such a goal makes sense and is possible. The trick is to avoid the unbridled optimism that results in a laissez faire attitude towards our work and the belief that “things will just work out eventually”.
A world without AIDS. An AIDS-free generation. These are hopeful, but ominous phrases, given the epidemiological trajectory of other diseases. Very briefly in the grand scheme of things, due to effective vaccines and a better understanding of the disease, we lived in a world without Polio (in the West at least). Polio, once the scourge of our nation’s children, had for all intents and purposes been eradicated, but complacency, skepticism, and suspicion have led to its reemergence and persistence. Declarations of an impending AIDS-free generation are a declaration of the way things should be in a sane universe, and should bring hope to millions, but we should not let this give way to the sort of unbridled optimism that leads to loss of interest and the unfounded belief that the projected achievement of an AIDS-free generation means that we have the end of our work in our grasp. Diseases often have a social context, and as social contexts change, the course of diseases in the population can change. Modern sewage treatment and vaccines eradicated polio. A changing social context that made people suspicious of the standard course of vaccinations for children may have brought it back.
• In the United States, young people (aged 13 to 24) account for more than 25% of the 50,000 new HIV infections each year, and 60 % of these young people have no idea they are infected.
These numbers are somewhat startling in that the rate of infection in the United States has stayed pretty much the same. Further, our youth are getting hit hard by the epidemic. Yet, very low numbers of sexually active youth are getting tested for HIV. How can we end AIDS when the youth, our future, are getting infected and may not even have HIV in their consciousness?
• In 2009, Latinos in the US accounted for 20% (9,400) of new HIV infections while at that time representing approximately 16% of the total US population; the HIV infection rate among Latinos was nearly three times as high as that of whites (26.4 vs. 9.1 per 100,000 population).
• In 2011, the Centers for Disease Control and Prevention awarded $55 million over five years to 34 community-based organizations (CBOs) to expand HIV prevention services for young gay and bisexual men of color, transgender youth of color, and their partners. ONLY 4 of which specifically target Latinos.
To further compound the situation, Latinos, who comprise a big portion of the young population in the United States, are often on the margins of society, thus decreasing the chances of them receiving sexual education and HIV testing services.
Yet at the same time, everywhere we turn in the field, we are being told there is an end in sight. There is almost a sense of a mad dash for the finish line. Right now, 31 years into the epidemic, the US National Institutes of Health (NIH) are currently funding 5,865 HIV/AIDS related research clinical trials, of which 3,673 are in the United States. That’s more studies than the number of people at my college. With such a large number of studies being funded and undertaken, why aren’t we further in terms of progress?
In July 2010 the NIH reported the discovery of 3 HIV antibodies that can neutralize 91% of most of HIV strains. Thirty one years into the HIV/AIDS epidemic and we are still without a cure or a vaccine. Just this past week, The National Institute of Allergy and Infectious Diseases (NIAID), which is part of the National Institutes of Health, will stop administering injections in its HVTN 505 clinical trial of an investigational HIV vaccine regimen because a safety monitoring board found that the vaccine did not prevent HIV infection or reduce viral load (the amount of HIV in the blood) among vaccine recipients who became infected with HIV. HIV vaccine development has been a bumpy road since the start due to Economical and Ethical issues as well as lack of research coordination.
Why is there so much left to do in terms of ending the epidemic? Behavioral approaches have not proven scalable for high risk populations and high incidence areas, and for over a decade the major emphasis has been on the behavioral. However, we must note that the impact of HIV/AIDS is embedded, and often directly results from historical health disparities. Health disparities are often the result of multiple overlapping issues (not just individual beliefs or actions). That is where community based organizations, which are embedded in communities and reflect community members, are key to addressing the epidemic.
Recent research (specifically, the National Institute of Mental Health Project Accept) found that community-based interventions designed to make voluntary HIV testing and counseling more accessible, actually increase the number of people who know their HIV status, and prompt people—especially those at high risk for infection—to adopt safer sexual practices, according to results from an international trial. Another recent study out of Los Angeles, found that perceptions of HIV in one’s community predicts HIV testing (Shi, et al., 2012). Specifically, there was a 30% testing rate among those perceiving high seriousness versus an 18.8% testing rate among those perceiving low seriousness. Who helps increase that awareness and sense of seriousness? Oftentimes, it is the community based organization.
As the Affordable Care Act, the National HIV Strategy and the CDC’s High Impact Prevention Strategy move more services to a clinical setting, do not forget about the value and resources community based organizations bring to the table. If we hope to reach an AIDS Free generation, HIV Testing is paramount. You can’t stop the spread of a disease that many people might not know they have. An understanding of the value of clinical trials is paramount. An understanding and acceptance of the new biomedical strategies is paramount. Addressing health disparities is critical. We are talking about the availability, acceptability and accessibility to the latest strategies, and resources. The data shows community based organizations are needed to move forward. Don’t leave the community out of the relay, pass the baton on to them and let’s work to ensure people are aware of HIV, that people get tested and that people have access to care.
HIV/AIDS continues to impact our communities, and disproportionately our minorities and youth. We continue to work towards a world without AIDS. We hope for a world without AIDS, but we must remain vigilant and engaged. Even hope is not enough, for as Tony Calabrese observed, “If all you have is hope, it’s not enough. Hoping, wishing, praying without action is a waste of time. You will accomplish nothing by wishing it would happen. You must get off your butt and make it happen.”
For more information on the data presented herein, please go to: [http://www.cdc.gov/hiv/risk/racialethnic/hispaniclatinos/facts/index.html]
Written by Dr. Miriam Y. Vega