I am just back from Phoenix where I spent the weekend with people living with CML, chronic myelogenous leukemia. The operative words are “living with” because it wasn’t very long ago when people did not live long with this disease. However, medical science and dedicated researchers like Dr. Brian Druker at OHSU in Portland, Oregon have brought us what first appear to be “miracle” pills (Gleevec, Sprycel, and Tasigna) that can keep patients alive and doing well.
My weekend was spent with several people, all taking one of the tyrosine kinase inhibitor drugs, as they were planning next steps for a new advocacy organization, The National CML Society. The Society is the creation of Greg Stephens of Birmingham, Alabama, a business consultant who lost his mother to CML. Now he has devoted his life to giving voice to patients, researchers, and building a vibrant community.
CML is not common. There are just over 4,000 new cases in the U.S. each year. And, now that there are three powerful and approved medicines, some people feel the disease is “cured” and not in urgent need of public discussion. The patients I met with said this was “baloney” and they were driven to support the new society because they felt the obvious advocacy group, The Leukemia and Lymphoma Society, was not giving them enough attention nor listening carefully to their stories.
For example, many of the patients do not feel their life is on an even keel. Yes, they are living. But the side effects of the drugs are not insignificant. Fatigue and joint pain affect many. Then there’s the expense of the drugs, thousands of dollars a year and where some patients are having to fight to get support.
There’s a scientific questions hanging out there now too that these patients feel needs full discussion. Can some patients stop taking the medicines after a few years and rely on their own immune system to keep the leukemia at bay? Some research in Europe says maybe so. American doctors do not yet appear to be convinced. And drug companies would probably not favor patients turning away from their otherwise lifelong reliance on their products.
The mood in Phoenix was empowered. If the traditional advocacy group doesn’t meet your needs, start your own. If doctors don’t pay attention to your side effects, get a new one. If there’s early research that you could one day go off expensive meds, push for more research to answer the question.
It was thrilling to be around these “rabble rousers” as they formed a national plan to put patients first.
This is not to say pharma companies have not been and won’t be supportive or that the LLS won’t listen. But what’s cool is that patients are driving this and with the tactics they are planning, grassroots events around the country and innovative tactics online, they can have a strong voice. We plan to help. It’s a model for many other health conditions.
I welcome your comments.
Wishing you the best of health,
*This blog post was originally published at Andrew's Blog*