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. Read more »
*This blog post was originally published at Andrew's Blog*
At a [recent] session on caring for adult survivors of pediatric diseases, Bradley J. Benson, FACP, and Niraj Sharma, FACP, had some interesting statistics to share.
For example, more than 90% of children with a chronic or disabling health condition are expected to live more than 20 years, meaning they’ll eventually need an internist’s care, and every year more than 500,000 children with special healthcare needs turn 18.
As Dr. Sharma noted, “We’re not talking about a handful of folks.” Read more »
*This blog post was originally published at ACP Internist*
It was just time to end the era of gene patents. About 20 percent of human genes have patents, which is unacceptable. Here’s an excerpt from the New York Times story:
A federal judge on Monday struck down patents on two genes linked to breast and ovarian cancer. The decision, if upheld, could throw into doubt the patents covering thousands of human genes and reshape the law of intellectual property.
One of the individual plaintiffs in the suit, Genae Girard, who has breast cancer and has been tested for ovarian cancer, applauded the decision as “a big turning point for all women in the country that may have breast cancer that runs in their family.”
Chris Hansen, an A.C.L.U. staff lawyer, said: “The human genome, like the structure of blood, air or water, was discovered, not created. There is an endless amount of information on genes that begs for further discovery, and gene patents put up unacceptable barriers to the free exchange of ideas.”
I’m curious how Myriad will respond to it.
*This blog post was originally published at ScienceRoll*