Thursday, May 03, 2007
Paying for your life
Every year, around 6,000 people learn they have ALS or Lou Gehrig's disease. That may seem like a small number, unless of course you are one of those people, or love one of those people. It is an awful disease that robs people of strength in their extremities and then relentlessly marches toward the center of the body, eventually causing paralysis of the throat muscles and diaphragm. There is no cure, and once diagnosed, people are essentially handed a death sentence.
Unfortunately, there has been little progress made in the treatment of this disease. Many believe that is because there are few incentives to investigate and develop medications, because of the small number of potential beneficiaries. Unlike other neurodegenerative problems, such as MS, there are fewer clinical trials for ALS, and investigators have greater difficulty securing funding. That could be why so many more advances have been made with MS. To be fair, ALS is considered an "orphan disease," and because of that there are some federal incentives to reduce the cost of drug development. Many researchers, though, say it is not enough.
This morning, we told the story of an investigator who decided to get creative. He went to his own patients and suggested that they pay to be a part of a clinical trial. He didn't require payment, but he explained that the trial was in jeopardy without more money. We followed one patient who gave $4,500 and another patient who thought it was wrong to pay and gave nothing. Both say that ultimately, they were treated fairly and even had some benefit from the medications.
It does raise a larger issue. Should patients with a terminal diagnosis be asked to pay to participate in a clinical trial or is that ethically questionable? Should we as a society do more to support funding for rare diseases, such as ALS? What are your thoughts?
ABOUT THE BLOGGet a behind-the-scenes look at the latest stories from CNN's chief medical correspondent, Dr. Sanjay Gupta, and the CNN Medical Unit producers. They'll share news and views on health and medical trends -- info that will help you take better care of yourself and the people you love.
PREVIOUS POSTS• Is melamine changing your diet?
• Doctors & drug companies
• What is in the best interest of the dying?
• Planning for a bird-flu outbreak in real time
• Fit Buddies update
• Ready for the end of the period?
• WIC on the chopping block
• Out of Touch After Surgery
• Thumbing your way to arthritis
• Introducing the Fit Buddies!