CPAP was a $2.3 billion business last year, is a household word for millions of Apneacs around the world, and deserves credit for saving the lives of countless souls. But there Colin Sullivan was tonight, the inventor of CPAP scrounging around for an available seat and eating from the same walk-up buffet of fried chicken and jambalaya as the rest of us at a routine sub-committee meeting of the American Thoracic Society. I wouldn't have noticed him otherwise, but my dinner companion pointed him out and I made my way over to introduce myself and thank him on behalf of myself and the entire CPAP patient community. "It's really an incredible device when you use it properly," I said.
"Yes, it really is, isn't it?" Dr. Sullivan responded, graciously ducking out of taking credit for his invention, instead seeming to marvel with me over it as if it were something that had always had a life of its own. Then I asked if it were alright to get a picture with him, which he happily agreed to. I expected him to be okay with that. What I did not expect was when he pulled out his own camera and asked if he could get a picture taken of the two of us with his camera. It then occurred to me that as star-struck as I was with him, having introduced myself as the founder of a popular Sleep Apnea forum for patients, he had a little bit of the same regard for me. For Dr. Sullivan, it is and always has been all about the patient.
In 1979, the only treatment for Sleep Apnea was a hole in the neck, which had quite a chilling effect on the number of people who self-identified as Sleep Apneacs. Dr. Sullivan tells the story of how since there were so few patients, he had to use himself, his lab partners and their wives as guinea pigs for his crazy new idea to use positive airway pressure to splint open the airway. Once he had demonstrated that CPAP worked, more and more people stepped forward and advocated for themselves to get the machine. It was the patients then, just as it is the patients now, he said, who were their own advocates for getting their doctors to prescribe CPAP, and for improvements to be made to CPAP to make it more comfortable to use. He doesn't seem to give a hoot about medical protocol, procedure or propriety unless it is in the service of patients.
I saw Dr. Sullivan's shoes. They look more like something picked up off the rack at Sears than Ferragamos. You would expect the man responsible for saving countless lives and bringing about a multi-billion dollar industry to be extravagantly wealthy. He's not. The scuttlebutt at the dinner was that the folks who made millions commercializing Dr. Sullivan's invention didn't really share the wealth. Dr. Sullivan isn't bitter, though. Knowing that patients like me are living better lives than we otherwise would but for his existence seems to mean something to him. And that might explain why he wanted that picture of himself with me at least as much as I did.
Colin Sullivan, inventor of CPAP and Mike Goldman, founder of SleepGuide.com Sleep Apnea Support Forum