Monday, March 12, 2012

The AIDS Alphabet: S is for SWAN, Surviving With AIDS Network

The AIDS Alphabet: S is for SWAN or Surviving With AIDS Network

Photographer Kurt Weston, shared with me the story of SWAN (Surviving With AIDS Network), for the biography Journeys Through Darkness. Here's an excerpt.

As always, thanks for visiting! Look forward to seeing you at the 2012 NYC Rainbow Book Fair

Alina Oswald
Author of Journeys Through Darkness--A Biography of AIDS

Journeys Through Darkness
In 1993, after Kurt Weston went out on disability, a whole cascade of AIDS opportunistic infections started ravaging his body. His immune system became so deteriorated that purple blotches of KS lesions started to cover his face, body and his insides. At the same time, CMV continued to spread, attacking and scarring his retina and carving holes in his esophagus and creating enough damage for his doctor to wonder how Kurt was able to still be standing.

But he was still alive. If AIDS was to kill him soon, the photographer didn’t want just to hang around waiting for death to come and take him. He was determined to fight until his last breath, so he started to search for new ways to stay alive.
That’s how he found out about other AIDS organizations, like Northside HIV Treatment Center and AIDS Alternative Health Care Project. He started frequenting these ASOs too, and met people who were experimenting with alternative and Chinese ways of treating HIV. They were looking for unconventional ways to help them survive because too many of them had bad reactions to AZT.

Kurt also noticed that these individuals were not sharing their experiences with anybody. They would only whisper about their results with trying things like acupunctures, massage, yoga or the more drastic ozone treatments or drinking their own urine and other similarly bizarre therapies.
Their keeping secret this kind of information intrigued Kurt. He became interested in learning more about the various ways that could keep him—and others like him—alive. The photographer also realized that he needed to find a way to bring together those experimenting with alternative treatments to allow them to openly share their experiences with the others, so that everybody would become more aware of all possible ways to fight the virus. 

Swan on Hamburg Canal. Photo by Alina Oswald
So, in 1993, Kurt Weston founded SWAN. Surviving With AIDS Network was a grassroots group that met twice a week for one or two hours. Afterwards people could hang around to socialize and ask more questions. SWAN offered a safe place for people living with the virus to exchange their AIDS survival stories and experiences, no matter how extreme or bizarre they were.

For instance, because many AIDS patients experienced wasting syndrome and their bodies were losing muscle, becoming frail and with a skeleton appearance, Kurt invited nurse practitioners to his SWAN meetings to monitor the amount of muscle mass of the participants. It was a trade-off between patients and nurse—patients would go and help medical professionals in clinics and in return they would get a free BEI or Bio Electric Impedance test measuring their amount of muscle mass, thus monitoring the wasting process caused by AIDS.

Swan Canal in Hamburg, Germany. Photo by Alina Oswald
Kurt also brought in medical doctors to talk about the latest medications coming up the pipeline. That’s how SWAN participants found out about the life saving HAART (or Highly Active Anti-Retroviral Treatment) regimens, the protease and entry inhibitors that started to be FDA approved only years later in the mid-nineties. That’s how SWAN members and participants learned about the upcoming drug called Fuzeon, which was FDA approved only in 2003. The entry inhibitor, supposed to keep HIV from entering (and then destroying) the T cell, took forever to hit the market because it was a complex drug that was extremely difficult to manufacture. Fuzeon is now available only as an injection. Fifteen years after being diagnosed with AIDS and over ten years from the founding of SWAN, Kurt Weston made Fuzeon part of his drug regimen.

One of the doctors who volunteered speaking at SWAN was an HIV specialist who was in particular dedicated to his work. Kurt noticed that the doctor was truly paying attention to his patients, treating not only the disease, but also the person it touched, and that he had an extensive knowledge of HIV/AIDS and was always on top of the latest, cutting edge treatments.  The only way Kurt could explain the doctor’s dedication, understanding and knowledge of the disease was to think that he was an HIV patient himself. In time, the physician became a regular at the SWAN meetings.

Kurt was so impressed with the doctor’s willingness to try treating AIDS with some of the most aggressive treatments available at the time that he decided to become his patient. After his third bout of pneumonia, the photographer saw for himself just how open his new physician was to experimental treatments—his new doctor was the one who agreed to desensitize Kurt back to Bactrim. A couple years later, in 1995, when Kurt left Chicago and moved to California, he left his physician to take over the SWAN meetings.


  1. This is enlightening. These are the people who inspire me to be a stronger person. These are the people I think about when I get frustrated because someone cut me off on the freeway or the line in the grocery store is too long - there are bigger things to concern myself with, and there are people bearing burden MUCH heavier than my own. You know, it's information like this that should be required reading in high school. We're living in a world where teens consider sex so indifferently that they don't understand the repercussions of their actions. We also, sadly, live in a day and age where teens truly believe that "AIDS isn't a death sentence." It's true, it's not a death sentence, but our youth thinks they can be carefree about sex and if they were to catch something, they mistakenly think there are medicines to "cure" it rather than "tame" it. So disheartening. Once again, great post Alina.

  2. WOW! Thank you Sean!

    It means A LOT to me to read these kinds of comments, reminders that I don't write (and photograph) about AIDS in vain. I truly appreciate you sharing your thoughts and am, indeed, humbled. Comments like yours keep those like me continue to try to do their tiny part.

    I totally agree with you. Like you, I feel that we should talk more about HIV/AIDS, to stop it from remaining what it has become nowadays--something some may still fear and others don't quite take seriously. Also, I believe we should find other words to describe HIV/AIDS--stay away from "manageable disease," "not a death sentence anymore" and stuff like that... while trying not to preach (too much). I say not too much because, to some, talking about HIV/AIDS will always sound like preaching, no matter what.

    Truth is we have a long way to go, still, when it comes to HIV/AIDS. Most of the time, personally, I feel discourage. Like nobody wants to pay attention. Comments and inputs like yours give me hope and help me continue to take it one tiny step at a time, no matter the adversity associated with HIV/AIDS topics.

    You make a difference! I am humbled by your comments and thanks so much for your ongoing support!