THE DISH RAN AWAY WITH THE SPOON
I began the next day with a bagel and coffee in the Lobby Cafe. It was my last shot at the exhibitors. I made the morning rounds of the booths, handing out proposal packets and pitching the film. At lunchtime I found Sherry at the Boss’s booth and we escaped in the rain to Chinatown for tea and octopus soup. She told me how much money there was in the home-care industry. It didn’t take much math to figure out. Ten serious “severes” came to over a million dollars a year gross. The amount of mark-up was a bit of a mystery for an outsider, but I could only guess that deals were cut all the time on volume and connections. The industry had become a massive but tightly secretive beast that fed on itself and the community it served. The community didn’t have very many choices because they were so small and blood products were so specialized. Prophylaxis was being promoted especially to the younger families for preventing joint damage. “Infuse and infuse often” was the catch phrase, and your child will have a normal childhood. What the home-care industry offered was service and convenience, like having water delivered as opposed to getting bottles at the grocery store. Support systems and education were also offered by some home-care companies. For a community that’s spread out home-care provided a link, a network, breaking the isolation that for the hemophiliac was a given in the past when many died before adulthood.
Sherry spoke of how her husband had been a race car driver up until the last week of his dying from AIDS from contaminated factor. Presumably her husband had also had a great mind and good teeth. We stopped at a Chinese grocery store where I bought a box of dried ginseng, and then drove back to the hotel where I made my last round at the funding spoon in the Exhibitor’s hall, pitching and handing out proposals to deaf ears, surrounded by others giving pitches about their services and products and handing out brochures and proposals.
Craig passed me a book that had been financed by the industry. He introduced me to the author, Lureen Kelley, a real dish and the mother of a young hemophiliac. She hadn’t been struck by AIDS in her family. Her son was born after the big problem had been corrected and he used a recombinant factor derived from genetically engineered Chinese hamster ovary cell linings. Laureen was a bit of a celebrity in the hemophilia community. She had written several books and published a news letter directed at the younger generations, all financed by different segments of the industry. The generations of hemophilia had been split apart with the younger, new families of hemophiliacs separating themselves from the older generations because of the stigma of AIDS. Laureen was that open-minded link who was looked up to by all generations and the industry.
Right then it dawned on me. The industry spent money to advertise internally. Their giving back to the community was pure unadulterated advertisement which also offered great service benefits. Like Coca Cola they advertised profusely, but their market was focused and small. A patient for life to a home-care company could mean millions of dollars in profits and most found a factor product that they liked and stuck with it. The older generations were suing the pharmaceuticals—why should they help to tell their story. I was pretty much dead. I was an outsider who wanted to tell the whole story. I continued to pitch with enthusiasm as the outsider with an objective point of view, knowing that this is not what anyone wanted to hear.
The hall closed and the only event left was the ball, funded by a pharmaceutical company. I showered and changed in Craig’s room, then drove over to the aquarium in Camden, New Jersey where I danced with the dish and smiled at the spoon and drove off in the Stang in the rain.
.
Hey diddle, diddle
A rock and a skittle
The Buddha came out of the moon.
The turtle just laughed and kept it real short
And The Queen disappeared from the room.