You’d see patients where interferon wasn’t working, and they’d been issued a death sentence. Suddenly, all their hopes for the future were restored, and, with minimal side effects! This was around 1999, and the Internet chat rooms were just beginning. Patients in the trials began talking to each other like they’d never done before. I’d see a patient, and I’d read about it on the Internet that night: “few side effects,” “100 percent response.” Patients would come to me and say, “My doctor has never heard of this drug.” I’d never written it up. I hadn’t presented the data. Their doctors thought I was a charlatan. For a lot of people, Gleevec was simply too good to be true. But these once-dying patients were getting out of bed, dancing, going hiking, doing yoga. The drug was amazing.
This is what we all live for in research, in medicine, in Pharma and Biotech… the chance to be part of something really exciting that makes a difference to patients lives and changes things like how we approach the treatment of cancer forever.
This was also true for the investigators such as Brian Druker, Charles Sawyers, Moshe Talpaz and John Goldman, all wonderful doctors who were proud to be part of something that truly helped their patients. It was truly a honour to work with them.
The side effects Brian describes above are were so very real as I went round the trial centres meeting the doctors and patients one long month back in 1999. There was a lot of very sick people in those clinics, many with advanced disease, maybe a year to live and others who had already booked their funeral but were hoping to live long enough for a particular family event like a a wedding or a child's peewee game. As the patients told their life stories, you could not be unaffected by their pain and desperate hope to live. Some of those stories came from young people in their 30's, their life should be ahead of them and instead they were facing a death sentence.
The fledgling internet chat rooms in those days were wonderful sources of information and inspiration; imagine you can live the road well travelled with the patients in real time and see how they are doing, how they are responding etc. Those quotes make for great stories to share when you hit roadbloacks in the drug development and somehow, everyone else involved on the process becomes inspired by those stories too. Suddenly, problems become challenges to overcome and resolve.
It makes me sad to see Pharma marketers or review teams nervous of monitoring for fear of adverse events. Embrace them, do something about them, learn from them, help them. But most of all, travel the road with the patients and engage where you can. They're your biggest fans and harshest critics.
If you listen to their messages (as I did almost daily for 4 years) you can try and do things for the greater good of all patients with a disease and hey, you will be a much happier and humbler person / team / company for it. People forget that we're here to serve, not to sell. Between stimulus and response there lies a gap – you can choose your response and make a difference or not. Indifference and apathy don't really sit well here.