ASH is the American Society of Hematology (Hematology.org), and its annual meeting is the ASH Conference, or just ASH. This year ASH is in San Francisco, and we three are among the 20,000 attendees.
A few hundred people attended a session titled "The Rising Cost of Medical Care: Understanding the Problem and Exploring Solutions" The underlying assumption is that the cost of health care is rising at an unsustainable rate, which may be true, and that a major contributor is the high cost of the new, innovative, (and often highly-effective) cancer drugs, which is debatable. First a panel of experts spoke on the issues, followed by questions from the floor.
Dr Hagop Kantarjian, from M D Anderson in Houston, was the first panelist and by far the most negative, roundly condemning the pharmaceutical companies and anyone who doesn't likewise condemn them. If it is possible to make a good case against the high prices, his talk did not do that, because it included provably incorrect information, outdated and superseded data, and assumptions that don't stand up. To his credit, he did conclude by saying that nothing would happen without intervention by the patients, which I believe is true but probably not in the way that he imagines. I learned something about M D Anderson.
In contrast Mr Alex W Bastian, of GFK Market Access, had a much more factual and reasonable presentation. Among other facts he showed data demonstrating that the cost of cancer care has remained at about 5% of total health costs in recent years. I wish I could recall more of what he said.
I asked, from a microphone on the floor, if I could tell a little of my story, as a patient, instead of just asking a question, and was given permission. I can't recall exactly what I said, and have no record of it (though there may be a video of the session somewhere), but here is what I think I said, or I now wish I had said:
I was diagnosed with myeloma more than 11 years ago, and, with my family, have since traveled the country and run 85 marathons, living a vital and enjoyable life. I could do that because, for most of that time, I have been on an innovative new myeloma treatment called Pomalyst, just a pill that I take every night.|
Where did Pomalyst come from? Someone discovered that thalidomide was a useful treatment for myeloma, and the profits from Thalidomide funded the research, development, and testing of Revlimid. Then the profits from Revlimid similarly funded the development of Pomalyst. That is how our system works. As long as a pharmaceutical company can see the possibility of a good return on their investment, it will be willing to innovate and take the risk of bringing a new drug to market. If we somehow remove that incentive, innovation will go elsewhere. Common sense.
An Australian doctor suggested to me that the government should be in charge of the entire process, so that it could be more fair. I doubt that it would result in more or better new drugs, and I suspect that everyone would oppose it, including the insurers, the pharmaceutical companies, and the patients.
I'm sure of two things: First, the system that we have is working. It isn't perfect, but it works for me and many thousands of others who are alive and thriving today because of the new treatments. Second, the sky is not falling. Or if costs of health care are rising unsustainably, the high cost of cancer drugs is no more to blame than any other aspect of health care.
I have had a wonderful life in the past 11 years. My wife and daughter appreciate it, as do my two sons, my brother and sister, and lots of nephews and nieces. Not only did I enjoy the birth of two grandsons in that time, but they got to know their grandpa. And isn't that why we're all here?
I think I did say most of that, and I'm impressed that they let me say it all. It will be the highlight of ASH for me.