February 21, 2011

The Rochester Victory Alliance, the University of Rochester Medical Center’s HIV vaccine clinical trials unit, has opened a satellite clinic in downtown Buffalo to make it easier for volunteers in western New York to participate in ongoing HIV vaccine trials. The office is located at 206 S. Elmwood Ave.

The new location is part of a collaboration with AIDS Community Services of Western NY (ACS), a not-for-profit community-based organization that provides HIV/AIDS education, support and medical services to eight counties in western New York.

“We are excited about bringing HIV preventive services to the Buffalo community and feel fortunate to have found such a great partner as AIDS Clinical Services in Buffalo,” said Rochester Victory Alliance Director Michael Keefer, M.D. “Since the beginning of the AIDS pandemic, ACS has been dedicated to helping people at risk. They share our goal of one day achieving a world without AIDS. While that is still a long way off, they realize that what we all do today can make an important contribution.”

As new HIV/AIDS cases continue to grow each year, the demand for a vaccine is critical. Local and state statistics show that Buffalo and Rochester share similar rates of new HIV infections, with 67 to 69 percent found in men. Over 50 percent of new cases are in people ages 30 to 49, and almost 40 percent are African American. The Centers for Disease Control reports that one in five men who have sex with men are HIV positive and nearly half do not know it. Young men – especially young black men – are least likely to be aware they are infected. Globally, approximately 33 million people live with AIDS today and more than 16 million children have been orphaned due to losing parents to the disease.

The University of Rochester Medical Center was one of the first sites in the nation to conduct HIV vaccine research studies, beginning in 1988. Since then, nearly 1,300 people from the Rochester area have participated in more than 50 vaccine research trials. The Rochester Victory Alliance is a member of the international HIV Vaccine Trials Network, which is supported by the National Institute of Allergy and Infectious Diseases of the U.S. National Institutes of Health. The Rochester Victory Alliance currently works with HIV vaccine research teams in Sao Paulo, Brazil, and South Africa.

For more information about services or volunteering in a trial*, contact the Rochester Victory Alliance at (855) 816-5500, or in Rochester at the University of Rochester Medical Center, 601 Elmwood Ave, Rochester, 14642, (585) 756-2329 (756-2DAY). Visit the Rochester Victory Alliance on Facebook at http://www.RochesterVictoryAlliance.org/and Twitter at http://twitter.com/RocVictAlliance.

*The Rochester Victory Alliance is currently recruiting for a study involving men who have sex with men, the fastest-rising group of new reported HIV/AIDS cases in the U.S. Men interested in volunteering for the study must be between the ages of 18 and 50, healthy, circumcised, sexually active and HIV-negative. Participation requires 10 to 12 confidential office visits, four of which must be at the Victory Alliance in Rochester. Participants will be paid an average of $1,000. The vaccine used in the study is synthetic and cannot cause HIV or AIDS.

We’re sitting on the sofa and talking and laughing in my brother’s apartment – my mother, several of my brother’s friends, and me. There’s my brother’s favorite music playing in the background. It seems like an everyday, ordinary scene that could be taking place anywhere around the world. Except that it’s not. My brother is in the next room, dying of AIDS, and my mother is going through the beginning stages of a transformation that will forever change her world.

Everyone who volunteers for a vaccine trial has a reason why he or she is there. Everyone has a different story to tell but all are bound by the desire to be part of the effort to find a way to truly end the AIDS pandemic, which to date has killed an estimated 25 million people worldwide and left approximately 33.4 million people currently living with the disease. I could not volunteer for the Rochester Victory Alliance studies because I have AIDS, and their studies are only for people who are HIV negative. However, I did jump at the opportunity to work there for a brief time as a Community Educator, both because I had lived through the deaths of my brother, my partner and countless friends, and because I possessed the same hope of making a difference and contributing towards the creation of a world without AIDS for the millions of people I have never – and will never – meet.

Last year, I attended FIGHT WITH LOVE, a theatrical/musical presentation about AIDS that benefitted Broadway Cares: Equity FIGHTS AIDS. The show was produced and performed by Rochester area students attending high school and colleges throughout Western New York. As part of the show, the performers did brief monologues about each other’s personal experiences with AIDS. This year, the show – now in its fourth year – will include brief monologues about experiences with AIDS they have collected from members of the Rochester community. These segments will go by quickly; one of them, maybe 2-3 minutes long, will be about my mother. The last of the four performances will take place on July 25th, which will mark her 92nd birthday. Following is a bit of background on her story.

My mother was born in 1918, the year World War I ended after killing 16 million people, and the year of the great influenza epidemic, which attacked 1/5 of the world’s population and killed an estimated 50 million people. She was one of three children of recently migrated Eastern European immigrants, and grew up in a poor household in what is now East Harlem in Manhattan. She married my father during World War II, and moved into the housing project where she now still lives, over 60 years later. They had three children: my older brother, who recently retired from the Department of Mental Health for the State of Connecticut and has a wife and two daughters, my younger brother, who worked for a number of years in an AIDS day care program in Manhattan, and me, the middle child. My mother worked when she was younger, stopped to raise a family, and then went back to work when I was a teenager and continued working until she was 87, most of that time as a secretary to a world-renowned heart surgeon at NYU Medical Center who, to this day, continues to call her to see how she is doing. Housemother to generations of medical residents, her “adopted children” still occasionally contact her even though they have scattered around the world and many are in important positions in major medical institutions. For the last years of her life, my mother’s mother lived with us in our Stuyvesant Town apartment.

Although our family had some problems over the years, as do most families, my parents did everything within their power to fill our home with love and a sense of security. They took an active interest in everything we did, encouraged us, provided for us, and made sure that, at all times and under all circumstances, we knew we were unconditionally loved. Like all parents, they weren’t always sure of the right thing to do or the right way to handle difficult situations, but they always did the very best they could and we always knew there was an infinite reservoir of love, even in the most troublesome of circumstances.

One evening in August of 1990, my grandmother, who was over 100 at the time and had recently been placed in a nursing home, died; exactly 12 hours later, my father, who was in perfect health, unexpectedly dropped dead of a heart attack while he was making cereal and coffee in the kitchen. My younger brother, who lived cross-town from her, died in March of 1992. My mother was left alone in Manhattan, not only to deal with all the financial and other life obligations from which my father had always protected her, but also to deal with another son who had moved to the seemingly far away land of Rochester with a “friend” who had been diagnosed with AIDS. She didn’t yet know that this second child – me – had been diagnosed with AIDS in the late 1980s, and we had never discussed – and at that time I had never felt the need to tell her – that I was HIV positive, as I knew it would disrupt and crush her fragile and carefully constructed, sheltered world. Like most families growing up in the 1950s, for our family sex was not a subject for discussion, homosexuality infinitely less so-something of an alien planet in an alternative universe that was well outside my parents’ framework and their understanding of what made the world a place in which to live.

My mother is an extraordinary woman – intelligent, charming, friendly, extremely funny, caring, accomplished and, at 92, amazingly beautiful, with a face that is as unlined and smooth as a woman half her age. She is interested in everything going on in the world, and can discuss the Gulf Oil spill as easily as the release of Mel Gibson’s latest outrageous tapes. But she has never been able to see or appreciate the amazing, wonderful lady that she is. Inside, she is filled with an infinite, complex maze of doubts, anxieties, and insecurities that have greatly restricted her world and often left her in deep depressions. This became much worse after my grandmother and father died.

When my younger brother first told my mother that he was gay, her initial reaction to someone else was that “she always suspected it but never wanted to hear it.” My telling her that I was moving to Rochester with Michael was very difficult for her to accept, and she was barely able to even speak about it for many months; her feelings were expressed as anger but I knew that it was more about fear and worry, since the papers were filled on a daily basis with horror stories about AIDS and she was deeply afraid and concerned about things she could not bring herself to talk about. She was never able to communicate that well with Michael in the eight years that we were together, and he died of AIDS in 1994.

In the middle of all of this came my brother’s initial diagnosis of toxoplasmosis. He did not want to have a brain biopsy to confirm the diagnosis, and the doctors treated him for toxoplasmosis. However, it ultimately turned out to be lymphoma, and although his lesion initially responded to treatment, there were soon three lesions, and then it spread throughout his body. One day he was trying to telephone his doctor and couldn’t get the numbers right; I had to make the call for him. About a week later, he wasn’t answering his phone, and we found him on the floor of his apartment, where he apparently had spent the night, unable to get up. But he was alive, and his friends put together a schedule so that someone would be with him at all times.

My mother stayed by his side as much as possible. Initially, my brother was conscious and we were able to talk with him; gradually he slipped away and, although he could hear us, he wasn’t able to respond when we spoke to him. My mother would spend time with him and, for the first time in her life, she was spending time with gay (and straight) men and women – all of whom she found to be friendly, respectful and, to all appearances, pretty much no different than other people she knew. She could see how much they loved my brother, and the good care they were taking of him. She enjoyed their company, laughed with them, cried with them and took comfort from their caring and compassion; At the age of 74 she was embarking on an unexpected and, at the time, unwelcome journey that would shake up her world in more ways than one.

None of us ever thought she would be able to survive the dying and subsequent death of one of her children. Aside from her two granddaughters, whom she deeply loves, we were her world; we were all she thought about and all she cared about; we were her life. We kept waiting for her to fall apart. Yet something happened in those last weeks while my brother was slipping in and out of consciousness. During what was, unquestionably, the most horrendous time of her life, she found the strength to deal with the situation with grace, courage, dignity, and an unending stream of compassion, not just for my brother and her son but for all of his friends who, for this period of time, had formed an army of support for him. In the midst of the worst thing happening that she could ever imagine, she began, ever so slightly, to open a door that had been shut tight since the day she was born. She allowed herself to get to know and enjoy my brother’s gay friends, and she allowed them to enjoy her. She chose not to stand apart but rather to join in the circle of love that surrounded my brother. Perhaps most importantly, she did something that is unquestionably very difficult for people of her age and generation – she allowed herself to grow and expand her horizons into a strange and unfamiliar world that was completely outside her experience, and one that she feared because it was so completely unknown to her.

While this change in attitude may be somewhat taken for granted today, in reality it was – and continues to be – a tremendous shift in thinking and a deep-seated struggle for most people in those generations raised in the first half of the twentieth century, and probably continues to be for many in subsequent generations as well. And, for her, it wasn’t a temporary change. While it’s still not an easy or comfortable subject for her, today I can talk to her about being gay, and not have to think twice about saying “Did you know XYZ is gay?” We can even, at times, laugh about it. Much more importantly, she thinks of Karl, my current partner, as a son, and treats him with the same love that she had always reserved for her three children, daughter-in-law, and grandchildren. And he returns the love in numerous ways and is incredibly good to her. Actually, I often think – and I tell her this regularly – that she likes him a lot better than she likes me; it certainly seems that way a good portion of the time.

I like to think that I pay tribute to this utterly remarkable, courageous and completely unassuming lady by being the person I have become and leading the life that I lead. But I have to admit it was an exhilarating and fulfilling feeling to honor her, Michael, my brother, and the many others I have known by taking the more concrete step of working with the Rochester Victory Alliance to make a difference in the lives of millions of people, born and yet to be born, by offering them the hope of a future where now there is only a question mark, and the hope of growing up in a world in which there is no AIDS. Every day, I wake up hoping that others will volunteer for vaccine trials not just to help an unknown group of people, but to honor, in the most profound way possible, those people in their lives who have made their world a better place in which to live.

Can there be a more meaningful tribute to someone than to become part of an effort that will ultimately save millions and millions of lives, now and in the future?

Fight with love! My mom did, in the only way she knew how, and, in ways she may not be able to fully appreciate, she won.

So can you.

- Steve M

Fight with Love

Showtimes:
July 23 at 4 p.m.
July 24 at 4 p.m. and 8 p.m.
July 25 at 2:30 p.m
Tickets can be purchased at the door or online

https://tickets.gevatheatre.org/TheatreManager/1/login&event=550

Geva Theatre Center Nextstage
75 Woodbury Blvd, Rochester, NY 14607
www.gevatheatre.org

http://twc-wny.com/fightwithlove/

Not only do we need people exactly like you, to join our completely-safe HIV vaccine trial, but this study is for you. Results so far have been amazing, but we need more vaccine-study volunteers to keep the fight alive. ARM THE WORLD AGAINST HIV. LEARN HOW TO HELP.

Click here to find out more about volunteering.

Click here to find out more about the science.

Click here to find out more about volunteering.

Click here to find out more about the science.

Click here to find out more about volunteering.

Click here to find out more about the science.

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