PHILADELPIA STORIES?
It was a short hop from Baltimore to Philadelphia with no other expectations than adventure. I was totally unprepared to attend a conference. I didn’t have the money to return home for extra clothes, and certainly no accommodations were in the budget. I knew people who would be there and I had no qualms about imposing on someone for floor space, but I didn’t expect any offers.
What I had heard about previous annual meetings is that the HIV hemophilia community had been making noise and protesting with death masks and picket lines. The general feeling was that the pharmaceutical industry and the National Hemophilia Foundation had burned the community with betrayal and indifference over the fact that so many in the community had died of AIDS and the number of deaths was increasing rapidly. This was over ten years after the HIV blood contamination, and with the exception of Ryan White, the devastation of the hemophilia community by AIDS had been a minor news item buried in the deluge of information. The hemophilia community had a very small political voice and they were basically at the mercy of the industry and government that had poisoned them in the first place. The Institute Of Medicine report on the blood supply didn’t own up to any negligence but made strong recommendations to prevent similar problems. The Senator who had introduced the Ricky Ray Bill, to compensate hemophiliacs who had been infected with HIV, did so with reference to the IOM report as well as the lobbying of the mother of the boy for whom the bill was named. Ricky Ray, like Ryan White, was a young hemophiliac who had been driven from school because of AIDS. The Ray family had also had their house burned down. Ricky Ray died when he was fifteen and neither Elton John nor Michael Jackson showed up to hold his hand.
In search of a place to sleep I dropped in on some old friends in Port Deposit, Maryland, about an hour from Philly. I hadn’t seen them in a few years but they were old trusted allies. Patti gave me an earth pendant on a silk band to wrap around my neck for protection. She said it was a centering device, so I guess it was mainly to protect me from myself.
My motives were pure, to tell a story, but the fact that the story wasn’t already out there made me believe that there were those who preferred the story be left alone and resolved within the “family” and extended family, the industry that manufactured the factor concentrates. Many lawsuits had been flying around for years, some resolved in quiet settlement and others dismissed as ungrounded. Though the focus of “the project” was hemophilia and not specifically AIDS and hemophilia, the less the public knew about hemophilia, the better off the industry would be in defending the lawsuits. Hemophilia could be treated as an aberration that happens to certain families and that was their problem. I had gotten another letter of support from another Doctor besides Brinkhaus, who stated that he was satisfied that we would tell a balanced story and he recommended that industry fund it. I had copies of the proposals which were far from perfect, but they were something to go on. Even if I couldn’t get support from the industry at the national meeting, at least I could gain a little more insight into the interconnected facets of hemophilia.
It was raining in Philly when I arrived at the hotel for the meeting. I had picked up a few items of clothing on sale at a mall, an expense that I considered over-indulgent, but my tee shirts and jeans would have hardly been appropriate for the entire weekend. I parked the red Mustang in the garage under the hotel and planned to use it for changing clothes since the barriers and pilings holding everything up and together provided some privacy.
Craig had mentioned that he was on staff for the conference, otherwise I was pretty much on my own. I had called Brent and said that I would be there, but he was still somewhat distancing himself from the project though he had said it was okay to keep his name in the proposals. He was still there but not all there.
I wasn’t trying to fake a limp as I walked up to the counter to register as a consumer, but an old football knee injury was bothering me. I also didn’t try to hide my teeth hoping that they would think I was one of the ones that didn’t know how to work the system yet. The limp was everywhere but people with hemophilia seemed greatly outnumbered by helpers, hunters and health professionals. Once I was signed in for the weekend at the cheaper price I stated my business (and admitted my healthy condition) to anyone who would speak to me. Since I generally had nothing in common with anyone besides being a human being I didn’t have to speak very much. I was totally out of my element—working a crowd—I saw any group larger than three as a potential lynch mob. I had no business being there but I had to do it.
Dale had told me how he enjoyed the National Meeting since it brought him together with so many of his “Blood Brothers” from around the country. That was their “brotherhood,” their group, and that connection was obvious throughout the hotel. But the meeting was organized because what was wrong with the brothers’ blood generated a lot of revenue. Everywhere there were signs: “sponsored by,” “funded by,” “through the generosity of,” hinting at the love/hate relationship of the industry and the consumer. We bring you factor on a silver platter to your door. Give us money. There it was, on the Streets of Philadelphia, Woodstock 3—drugs—the manufacturers, dealers and users having a party, exchanging information and making deals.
I didn’t see any of the protesting that I had heard about the previous meetings—splattered blood and so on—but the topic of AIDS was hard to escape. Most of the generations with the limp were long term positive or had full-blown AIDS. Rooms were set up for safe sex instruction and coping. There were support groups and women and teenaged children dealing with AIDS. Susan Resnik’s dissertation had shown how the hemophilia community had become a community since 1948, before which time hemophiliacs were pretty much on their own without treatment, voice or fellowship. They were still having a lot of problems, but now they had the opportunity to communicate with those who could help, including their “blood brothers.”
I sipped coffee at a cafe in the hotel near the entrance to the lobby and felt quite the outsider but still in awe of the proceedings having read about the early days, that history. I tried to put things in their proper context, historically and pragmatically. To the best of my knowledge, no other film specifically about hemophilia was yet in the works. It was a great story. There had to be money somewhere. The community members I had had contact with thought it was a go od idea. The Doctors had written letters in support. Susan Resnik was an enthusiastic prime expert. Richard Atwood was a wealth of factual information. BG, Linda Robertson was a great community contact. Craig Epsom-Nelms was a story in himself and his unselfconscious openness was truly a joy to experience in a world that generally criticized and hated. He was also a great community contact, and wanted the story of hemophilia told. Brent also wanted the story told, but not enough to jeopardize his job with the pharmaceutical company.
After contemplation and coffee at the café, I got my paperwork together, found a copy shop and put together forty proposals including the letters of support. I went back to the hotel, saw Brent, Craig, the Roman, Dale and others and then attended my first official Opening Session where the new Executive Director spoke of his goals for the National Hemophilia Foundation. At the end of the day the Exhibition Hall opened for the first time with free food and an open bar sponsored by a pharmaceutical company. Brent had a booth there where he distributed his newsletters about HIV not causing AIDS, among other groups with booths expressing views or selling things, home-care companies, the Red Cross, pharmaceutical companies and anything any way related to hemophilia. A variety of opinions abounded. It was truly an American event. On the whole the dress was casual but the number of dark blue suits was staggering.
Brad introduced me to The Boss, Mark Scudiery, from New Jersey who had been one of our initial funders and continued to offer support through his North Carolina staff, BG and Wayne Ward. The Boss staffed his booth with his Jersey group. He looked like Bruce Springsteen in a dark blue suit and worked the crowd like a professional pickpocket, engaging his prey with a warm smile and definite sincere concern for the community he served; he gave back to the community a lot of what he took. The Boss wanted the film made, but of course his first concern was making a living. This was good. I was hoping the other home-care companies would see the value in supporting a film about the community it served, that members of the community supported. We were dealing with a still-living history, including the King, Dr. Brinkhaus who in his late 80s was still vigorous and sharp enough to make an impact on a screen.
Craig introduced me to numerous people and I pitched everybody whether they were wearing a suit, walking with a limp or carrying a plastic bag of goodies. I had to get the word out, I thought. I always felt this sense of urgency as though my hair were on fire to get this thing to the next step before time ran out. I got absolutely nowhere but exhausted. After a few beers and some food, the opening day came to a close and people began to disperse to the hospitality suites. Brent went off with his drug company buddies. Craig was kidnapped by some New York chicks. I paid my way out of the garage and drove back to Port Deposit, Maryland where I slept in a bed and prepared for the next day’s battle. Hump.
August 13th, 2008 at 10:40 pm
[...] PHILADELPIA STORIES?… about HIV not causing AIDS, among other groups with booths expressing views or selling things, home-care companies, the Red Cross, pharmaceutical companies and anything any way related to hemophilia. A variety of opinions abounded. … [...]