Category Archives: Surviving AIDS

TRUTH & CONSEQUENCE: Testimonials on Living with HIV

In commemoration of World AIDS Day, GRIOT Circle honors the lives of loving, inspirational and courageous souls who transitioned too soon, by passing forward the wisdom they imparted from their battle with HIV and AIDS.   Here, in their own words, we share an excerpt from the oral history project Without the Burden of this Secret The conversations on HIV/AIDS in the POC LGBT elder community today, bear many common threads to the sentiments and experiences in these interviews which occurred 20 years ago in New York City.

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LOUIS GRANT  ::  OPEN & OUT

I have lost a lot of friends to AIDS.  Too often I have thought that some unnecessarily allowed themselves to succumb to the disease.  They did not fight, they were not positive [minded] they accepted the diagnosis as a statement of impeding doom.  It seems to me that we black folk have moved slower in acknowledging the impact of this disease on our community.  Our people are suffering and dying because too often we are afraid to come out to our family…to our friends at a time when we need them most.  I think it’s very important to be out in terms of being a homosexual man and as a person with AIDS.  I’m out in every context: in my home, in my work situation.  I think carrying the burden of this secret, as so many of us do, when one has AIDS it just contributes to the illness.  It dos not make sense at this point in one’s life, when one needs to grasp all the life preserves one can, to not be open and out.  For me it’s another effective survival tool.”

Louis Grant

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JOE LONG  ::  SURVIVING DEMON DOCTORS

I was diagnosed with the HIV virus in 1989.  I was tested when I discovered a parotid cyst in my right cheek.  I was putting all kinds of solutions and compresses on it and it wouldn’t go down.  I finally decided to get to a doctor at New York Ear Nose and Throat.  The first thing he said to me was, “This is typical of gay fellas, why don’t you go take the test?”  Swollen glands and parotid cysts were nothing unusual, so I said I didn’t want to take the [AIDS] Test, I didn’t think that that was necessary, I wanted to see what we could do about the swelling, but he insisted.  So I did.  When I came back ten days later he told me my results were positive and to go get on AZT—as simple as that.  I asked if there was something he could do about the cyst.  He said that, I needed to find somebody who could put me on AZT.  He conferred with his partner and just left it like that. [Were they caucasian doctors?] A Jewish doctor and an East Indian doctor.  There was no pre- nor post-test counseling.  And when I asked for my records so that I could follow-up on the cyst, they directed me to the records department and said that I could take them to any doctor I’d like.  They didn’t offer to treat me any further.  So I was like in the street.”

Joe Long

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CDC Releases HIV Infection Study

Nearly 3 out of 4 Americans living with HIV do not have their infection under control, according to a Vital Signs report by the Centers for Disease Control and Prevention.  The authors say the low percentage is because 1 in 5 people with HIV do not realize they are infected and, of those who are
aware, only 51 percent receive ongoing medical care and treatment.

Of the nearly 1.2 million people living with HIV in the United States, only an estimated 28 percent have a suppressed viral load (defined as viral load less than 200 copies of the blood-borne virus per milliliter
of blood)–meaning that the virus is under control and at a level that helps keep them healthy and reduces the risk of transmitting the virus to others.

However, of those living with HIV who are in ongoing care and on antiretroviral treatment, 77 percent have suppressed levels of the virus.  Effective HIV treatment and care benefit infected individuals by improving their health, and are also important for HIV prevention.  Results from a recent study of heterosexual couples from the National Institutes of Health showed that consistently taking antiretroviral therapy, in combination with safer behaviors, can reduce the risk of spreading HIV by approximately 96 percent.

Men who have sex with men (MSM), the population most severely affected by HIV in the United States, are least likely to know they are infected and less likely to receive prevention counseling (39 percent, compared with 50 percent of men who have sex with women and women who have sex with men).

Study authors underscore that improvements are needed at each stage in the overall process of treatment and care. That means increasing the number of infected Americans who are tested, linked to care, remain in care, receive prevention counseling and are successfully treated – all to achieve viral suppression.

For more information on new statistics on viral suppression click here–>  Vital Signs Study.

NATIONAL POC LGBT CONVENING: DAY TWO OVERVIEW

On the final day of the First National Convening on POC/LGBT Aging, hosted by GRIOT Circle in collaboration with AARP at the Brickfield Conference Center, participants tackled the challenges of forming the first national professional network and shaping the mission and vision of the network; Laurens Van Sluytman, PhD facilitated this process.

The Panel: Senator Benjamin Cruz, Brian de Vries, PhD, Mario E. Tapia, Helena Bushong and Kyaien O. Conner, PhD, LSW, MPH.

Laurens Van Sluytman, PhD.

The morning began with a facilitated discussion about Positive Aging, with a panel led by Bonnie Harrison, MSHC.  Panelist Dr. Kyaien O. Conner, from the University of Pittsburg School of Medicine Department of Psychiatry, delivered an excerpt of a highly impressive and comprehensive report that contained startling health disparity statistics on the POC/LGBT communities. Her research findings are a wake-up call to the national policy makers to address these critical and frightening statistics as the nation becomes more elderly.

Dr. Kyaien O. Conner (center) presents an excerpt from her research on disparities faced by POC LGBT elders.

Panel facilitator Bonnie Harrison, MSHC (foreground).

The Honorable US Senator Benjamin Cruz of Guam, hit home the need for the federal government to recognize marriage and create equality for the LGBT community, specifically for seniors.  None of the 1400 benefits enjoyed by heterosexual couples are provided to LGBT couples, which in turn has dire implications on LGBT seniors who have lost their partners and are left with income losses, sometimes as much as 70%.

Senator Benjamin Cruz and Brian de Vries, PhD.

Trans-elder activist Helena Bushong contributed to the dialogue on health and economic disparities within the Transgender community, and the complications of living with comorbidities, as the lack of research in Transgender communities can prove to be fatal in some cases.

Brian de Vries, PhD, Mario E. Tapia, Helena Bushong and Dr. Kyaien O. Conner.

Nancy K. Bereano, retired publisher, gave the keynote address about the value of community and support as we age.  She referenced a dear friend, who at 62, was diagnosed with cancer and built a network of friends to support her with the quality of her end of life process.  GRIOT Circle has taken those recommendations to heart and will incorporate them into our Buddy-2-Buddy program going forward.  This area was the missing link in the codification of this particular program.

Nancy K. Bereano.

This session sparked thought-provoking questions around organizational self-identity, as well as capacity levels available to support the future development of the network.  Some of the questions participants presented and attempted to address include: Who will develop a mission and policy statement?  Are we going to be volunteer-driven, how is that going to look and how exactly will the committees be formed?

Imam Daayiee Abdullah, Dir. LGBT Services, Muslims for Progressive Values.

How do we provide funding, technical and organizational support to each other on a national level (i.e. AARP/ ASA relationships)?  What would those relationships look like?   How do we handle the issue of members’ intellectual property sharing, as well as, broader issues of information sharing, including research findings, programs and services to promote the strength of organizations in the network?

Taike S. Brundige and Curtis Lipscomb applaud Dr. Conner's impressive research work.

Rev. Jaynce Jackson, Mandy Carter, Jewelle Gomez and Chezia Carraway, LCSW, PHE.

Please revisit our blog for additional reports, outcomes, updates and first-person offerings from participants at the First National POC LGBT National Convening.

PHOTO GALLERY: THE FIRST CONVENING

Over fifty aging professionals gathered in Washington, D.C. on October 12-13, 2011 for the First National Convening of POC LGBT Aging Professionals hosted at the AARP Brickfield Center.

The idea of organizing a National Convening targeted to POC leaders of organizations and POC elders in the community to create a cross-cultural aging Network to promote LGBT POC aging on a national platform came during the American Society on Aging (ASA) LAIN (LGBT Aging Issues Network) Retreat held 2010 in New Mexico and sponsored by the Arcus Foundation.

From the meeting emerged The POC “Hot Spot” committee of LAIN to help address the gaps and help inform an inclusive practice for future educational efforts of ASA.

This Convening is an occasion for discussion and an opportunity to develop the strategies for building a common vision among LGBT POC professionals, activists and allies committed to aging issues.  The Convening has been realized and the work of building a formidable network for aging professionals who serve the POC LGBT community has begun.  Here, we share some outtakes from the first day of facilitated discussions and group workshops.  Subsequent posts on the GRIOT Blog will record and report on this historic event, and the outcomes.

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Photography by SeanDrakes.com