You don't have to be a fan of Boston Legal to be vested in last night's episode.
Denny Crane (played by William Shatner) has been diagnosed with Alzheimer's. His internet research turned up a drug being used in Russia that has been highly successful at staving off dementia. But then he learned it is in Phase III clinical trials in the US, and he can't get access. As the show ended, he and Alan Shore (James Spader), his best friend and business partner, have just had their hearing accepted by the Massachusetts Supreme Court. If they win, Denny will be provided access to the drug.
A disclaimer before I go further: my mother is in the advanced stages of Alzheimer's, a disease which our entire family has suffered alongside her for more than 10 years. We have been down this road of new drugs being unavailable in the US when they are available in other places. It is frustrating and heartbreaking and when you hear Alzheimer's called "The Long Good Bye" -- I guarantee you that doesn't begin to touch the heartbreak.
But the real question this Boston Legal episode raises is whether patients with terminal and devastating diseases should be allowed access to drugs before they are approved by the FDA. What do you think?
Here are some thoughts:
- The FDA reviews and approves or rejects new drugs and protocols based on the applications and clinical trial results presented by a drug manufacturer. The clinical trials and their outcomes are crucial to the process.
- The entire reason we have clinical trials is to determine whether a drug or treatment protocol even works. Sometimes we learn that drug does work. Sometimes we learn it doesn't work, and may be harmless, or harmful, or even kills the patients who try that protocol. Sometimes we learn how much or how little of that drug or protocol is necessary to help a patient. If we override the clinical trial and approval system, then how will we measure a drug protocol's effectiveness and set a standard for care?
- The FDA is tasked with protecting us from food and drugs that are dangerous, or do not help us. If we begin providing drugs to patients before they are approved, then why do we even ask the FDA to do its job anyway?
- The FDA isn't doing its job well to begin with. If we create a new set of rules about access to drugs, that creates a new layer the FDA won't do well. Another division between the haves and have nots?
My personal feelings are so mixed.... I would have given my left arm or more to find anything that would have helped my mother's persona remain intact as long as it could. It's been years since we've seen Mom's personality.... she is a shell of herself....
Yet -- in the long run -- I want my children to benefit from good science and modern medicine.
(So as not to leave you hanging.... we don't have resolution yet for Denny Crane and his access to the Alzheimer's drug. The series finale takes place next week -- we'll find out then whether he'll be rescued, even if only temporarily, from what he calls "mad cow." If you'd like to watch last night's episode, you can do so at the ABC TV website.)
Find the follow up post about the conclusion to this Boston Legal episode.
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I didn’t see the episode but I’m quite surprised that the network and this show in particular is tackling such a big issue. I agree that we need to have good science and good medicine. On the other hand what about a patient’s right to choose.
There is a caveat and Alzheimer’s poses one of the big questions. Who gets to choose, the patient or the family? What if the patient is in early stages are they competent to make these decisions? When the family decides who are they making the decision for, the patient or themselves?
I would think this is not only a question of the FDA protecting the public, but it raises a host of medical ethics questions. Is there any time when the risk of a drug in trials should be used as long as the patient has informed consent? Have we become so litigious that even if we sign a waiver, if the drug doesn’t work would we all run to our favorite attorney and sue?
The question is where do we draw the line? I certainly don’t have any answers. I do contemplate end-of-life issues on a frequent basis. When clients share their stories it’s hard not to begin asking yourself the same questions. The Ancient Greeks felt you couldn’t live “the good life” until you meditated on your death. Is the answer to access rooted in our acceptance or fear of the inevitable? Is it a power and control issue?
Let’s keep the dialogue going because there is a richness and a call to arms in the questions.
The Alzheimer’s Association has lots of online resources available on this very topic. Take a look at: http://www.alz.org/bostonlegal
Also, please consider using this widget:
http://actionalz.org/widgets/crisis.html
The Alzheimer’s Disease theme in these episodes brings some very timely issues to light. The Alzheimer’s Association has quite a bit of information at: http://www.alz.org/bostonlegal