Last year, I was dying. Unbeknownst to me, my immune system was degrading on a daily basis and succumbing to the wily, and deadly, talent of HIV to adapt, infect my immune system cells, and produce more of itself through manipulating my own immune response, honed after hundreds of thousands of years of human evolution. This fatal irony, that HIV is able to pervert the function of the body’s immune system in order to survive itself, is what led to an entire generation of good men and women to die unnecessarily. And, HIV’s most pernicious fact is that it will wait for the right opportunity to kill me. If I do not adhere to my medication one hundred percent of the time, I risk giving HIV the opportunity to take advantage of my personal irresponsibility in relation to my medication to grow itself, produce more of itself, and kill more of me. Thankfully, the folks at Philadelphia FIGHT, and other organizations, know these facts. In fact, without their hard work and selfless dedication to Philadelphians living with HIV/AIDS, I would be dead or dying right now.
Last year, I knew I was HIV+. Yet, because of the years of internal self-stigmatization, because of messages muddled by otherwise well-meaning organizations like the Gay Men’s Health Crisis, and because of, candidly, my own personal irresponsibility and poor life decisions, I rolled the dice regarding my health. After all, I was a strong, robust, athletic man who would defiantly walk around Center City with an unwarranted self-confidence, going from place to place laughing and making others laugh. I was not the gaunt figure paraded out of the virologic closet so many fear-based campaigns rely on.
This is, perhaps, the most dangerous part of HIV stigmatization: the conflation of HIV/AIDS with appearance, outlook, and behavior. That is, if HIV/AIDS looks like sickness then if I do not look or act like sickness then I must not be the face of HIV/AIDS. Ironically, this fatal fallacy led me to engage in sexual behavior that, combined with the consent and actions of my HIV- partners, probably infected others, degraded my own natural immune response to HIV, and put me in a position where, homeless, my cheeks began to hollow out, my gums began to bleed, my energy level plummeted, and my intrinsic optimism waned along with my CD4 count.
So, last year, after decades of HIV/AIDS research, after decades of public health campaigns, and after thousands of HIV/AIDS related fundraisers, volunteer campaigns, and solemn memorials for those men and women we have lost to this virus, I was still stubbornly dying. At this point, it was the work of bureaucrats at the Philadelphia AIDS Activities Coordinating Office (AACO) that came into action because I made one single phone call to AACO upon the urging of an HIV case manager at Action AIDS. After this brief phone call with an incredibly knowledgeable, friendly, and commonsense woman at AACO who went above and beyond her duty in order to comply with my ridiculous lack of a voicemail box, I was fast tracked to an appointment at Philadephia FIGHT. And, at this point, I began to take ownership of my health and take the steps necessary to live long enough to be both a writer and, eventually, an LGBT senior citizen living with HIV.
My situation is not unique; after all, at last count, there were nearly 20,000 Philadelphians currently living with HIV/AIDS. What makes those living with HIV/AIDS in Philadelphia different, however, is the fact that we are lucky enough to live in the best city nationwide for HIV/AIDS related services. In this age where we have city council members paying their mortgages with their campaign funds, publishers figuratively in bed with the sheriff’s office for foreclosure ad revenue, and unqualified bureaucrats making nearly six figures at Philadelphia International Airport for doing nothing thanks to a dying city political party spoils scheme, we in Philadelphia also have something to be proud of: the best HIV/AIDS organizational infrastructre in the entire nation.
“Philadelphia [has a unique] richness in services related both to HIV and LGBT communities. There are some amazing organizations doing great work to curb the epidemic and to treat those infected with dignity and respect. The HIV community is tight-knit in that many of our organizations collaborate to ensure all communities have access to information and services,” says Elicia Gonzalez, executive director of GALAEI, the Gay and Lesbian Latino AIDS Education Initiative.
This richness and and multi-faceted approach, exemplified by organizations tailoring their unique services toward niche communities and neighborhoods is echoed by Kevin Burns, executive director of Action AIDS, explaining, “Philly is very much a city of neighborhoods. This makes providing HIV services unique in a few ways. Some of our clients want to be seen in their neighborhoods, which is why Action AIDS has four office locations in North Philadelphia, West Philadelphia, Center City and Chinatown. Other clients prefer not to be seen in their neighborhood and want to come to an office located elsewhere. Having sites located throughout the city allows clients flexibility and choice.” Burns sentiment follows the current data, too. Most new cases of HIV/AIDS diagnoses are in the Philadelphia neighborhoods in Northwest and North Philadelphia.
Gonzalez, head of GALAEI which is known particularly for its innovative and forward-thinking approach to HIV/AIDS awareness and outreach, points out that the uniqueness of needs of the HIV/AIDS population can pose, at first glance, as a challenge. “Although there are plenty of HIV organizations working hard to raise awareness about HIV and the importance of knowing one’s status, folks have competing needs and priorities that inhibit them from considering the role HIV plays in their lives,” she says. Going further, Gonzalez points out that, in Philadelphia, organizations respond to the individual needs of the HIV/AIDS population and those at risk for contracting HIV because, just as life has many layers affecting the well-being of its participants, so does HIV/AIDS.
“At GALAEI we see LGBT youth who, although are considered ‘high risk’ for contracting HIV, they come in for services that are not directly related to HIV prevention such as needing to find a job or housing. High rates of poverty, low educational attainment, and discrimination are all factors that contribute to the spread of HIV yet funding is often narrowly restricted to HIV prevention or testing,” she further points to public money being earmarked too specifically as one of the challenges facing organizations, adding, “Funding and programs must exist at the intersection of race, class, gender, sexual orientation if we are to achieve the goal of stopping HIV.”
Concurring, Kevin Burns discusses responding to challenges involving the medical nature of most HIV/AIDS programs. “I think we really need to re-evaluate how we are doing HIV testing. We need to incorporate HIV testing as routine when someone goes to the emergency room, the dentist’s office, or to a primary care visit. Keeping HIV testing outside of routine care contributes to HIV stigma. I believe that pretest counseling is outdated, contributes to HIV stigma, and is a barrier to knowing your HIV status. Why is it necessary for us to ask people to tell us why they feel they need an HIV test? It should be routine, pure and simple. Care, including medical case management is [itself] prevention. We need to move past artificial separation of prevention and care and have a unified approach to HIV,” Burns affirms.
Personally, I know that the reality Burns and Gonzalez are talking about is true. After all, if HIV/AIDS services were not, inaccurately, perceived by the public as medical only, I would have sought treatment much earlier in my own diagnosis. Instead, in spite of the efforts of organizations like Action AIDS and GALAEI, I still thought that HIV/AIDS services were only for those sick, unable to care for themselves, and dying. Thankfully, upon placing that call to AACO last year, I learned through action that this idea was mistaken. Specifically, I learned that HIV/AIDS services only begin at prevention efforts, and they certainly, and luckily, do not end there in Philadelphia.
“HIV prevention must be part of a broader comprehensive strategy towards health and wellness. This should be about health promotion not disease prevention. We must help people realize that they have a right to have a healthy and pleasurable sex life regardless of HIV status, age, sexual orientation, or gender identity. We have to move away from pathologizing our sex and sexuality, especially for queer communities, and work towards embracing messages that affirm and celebrate the myriad ways people experience and express their sexuality,” Gonzalez spontaneously answers my unasked, but thought, question about being HIV+ and having a sex life and whether or not those two ideas are mutually exclusive.
Talking about the importance of health in relation to overall well-being, including sexual health, Burns adds, “Everyone is entitled to access to high quality health care. Action AIDS [along with the other HIV/AIDS service organizations] is a community of caring people, staff, volunteers and clients all focused on increasing access to care for everyone.”
As someone who worked in the LGBT community’s non-profit industry for years, I know that the pay is lower than for-profit companies, the stress is high, and the hours are long. Even so, there are people like Burns and Gonzalez working everyday to help people, who like me, do not even know how much help they actually need and, by virtue of being human, deserve.
“I got into this field kicking and screaming. I did not want to be in HIV or in prevention work at all. I have often viewed the field of HIV to be demonizing, deficit-based, and perpetuating fear and stigma – especially for gay men of color,” Gonzalez responds to my asking about her personal motivations for heading an HIV/AIDS organization. “My personal mission has been to ‘bring sexy back’ to HIV. GALAEI has a program called PleasureRush! which acknowledges the necessary connection between pleasure and health and supports an understanding of sex and sexuality as healthy, natural, and an integral part of everyone’s life. Again, we cannot silo HIV into some little corner and tackle it as though it is some one-headed monster. HIV is a social condition that thrives in a sex-negative society.”
At this point, I start excitedly thinking of myself engaged in something called PleasureRush! with a bunch of Latino HIV/AIDS outreach workers and lose focus. Thankfully, Kevin Burns brings me to my senses by bringing up his personal motivations for working so hard and sacrificing time on behalf of folks like me living with HIV.
“My personal motivation to do this work is as a way of honoring my close friends who have died of AIDS and my belief that everyone is entitled to access to high quality health care,” Burns explains. “I feel blessed to have started at ActionAIDS in 1989 as a medical case manager and to have had the opportunities to grow and develop professionally and personally over the year.”
Along with Actions AIDS and GALAEI, Philadelphians have access to other organizations, including the Mazzoni Center, Philadelphia FIGHT, MANNA, and more. Personally, I get my care through Philadelphia FIGHT’s Jonathan Lax Center mostly because of personal friendships I have with workers there. But, any of the HIV/AIDS organizations in Philadelphia are, candidly, just as good as the others, typically. As an HIV+ individual, I picked the organization and programs that best suited me; and that’s the remarkable thing about Philadelphia. We have such a wealth of organizations working on behalf of both the general HIV/AIDS population as well as subgroups within the overall HIV+ population that we have a startling, and wonderful, choice when it comes to programs, case management, and more.
In Philadelphia, our HIV/AIDS service and prevention organizations embody the idea that Philadelphia is the city that loves you back. In fact, it’s just up to us to return the favor.
If you or someone you know is in need of HIV/AIDS related services, including a referral for HIV/AIDS case management, please contact the Philadelphia Area AIDS Coordinating office at 215.685.5600 or visit them on the web here. To share this article, permalink it via http://joshkruger.wordpress.com/2013/02/07/lovingyouback/