Friday, February 22, 2008

FDA Ruling and the Cure Culture

Cancer Drug Ruling Will Have Wide Impact
At issue is how the agency judges the effectiveness of cancer treatments. Traditionally, FDA only approved cancer drugs that extended the lifespan of patients. However, in recent years companies have studied alternate measures of a drug's effectiveness. One of the most controversial measures is so-called progression-free survival, or how long the drug halts the spread of cancer.
When you have a cancer that is currently incurable, it makes sense for the means for determining the effectiveness of treatment to be different from how you'd view for those who do have curable cases. There are advantages to having your tumor remain small even if it doesn't increase your lifespan. I breathe better now that I have less tumorous tissue in my body. My heart doesn't skip beats as much as it did when my tumor was larger. That's worth something to me. It makes it a lot easier for me to enjoy the life I have if I can breathe and be active.

The FDA needs to get beyond the cure culture that exists in this country. They are doing the PWD communities a disservice by trying to enforce a one-size-fits-all standard. Those of us who will have our disabilities for as long as we live deserve to have our needs addressed, too. This cure culture issue also came to mind when I read this article about Hepatitis C.

Hepatitis C Cures Now Common
Hepatitis C is caused by the hepatitis C virus, which is transmitted from contact with infected blood. HCV infection is the leading cause of cirrhosis, liver cancer, and liver transplants in the United States. Roughly 4 million Americans are infected, but only about a quarter of them know they have the virus, hepatitis treatment expert John Vierling, MD, says.
“We have to start identifying infected people earlier so they can be treated earlier,” he says. “It is true that about half of patients can be cured with the treatments available now.”
I recently read something that claimed Hepatitis causes more deaths than AIDS. However, you don't hear as much about it in the news. Some people feel that it's inappropriate to use the word cure with regards to Hepatitis C even when the virus is at undetectable levels. I have mixed feelings about this. Since I don't have hepatitis, all I can do is relate it, as best as I can, to my own situation.

With cancer, people will call someone cured if they are in remission but, as many people have experienced, remission isn't necessarily a permanent state. Now, the thing is, if you have been in remission and had your cancer "come back", it really means that it never left. Sure, it may have been reduced to undetectable levels--and, by the way, there are plenty of things that can affect whether a cancer is detectable (e.g. type or location of the cancer). However, that doesn't mean your body is truly free of cancer cells and as long as you have some cancer cells in there, you can develop enough of them for it to be detectable again. So, can we ever be sure that we've cured someone of their disease? Well, it depends on how we define the word "cure". Personally, I'd rather that we eliminated the obsession with cures altogether. If a person is able to enjoy their life, regardless of what they may or may not have in their body, then does it really matter whether that person is cured?


La Lubu said...

If a person is able to enjoy their life, regardless of what they may or may not have in their body, then does it really matter whether that person is cured?

Thank you. I wish the obsession was with "quality of life". When my mother was first re-diagnosed with cancer (metastatic breast cancer---it came back after well over a decade of remission), it was discovered that most of her jawbone was affected. She saw a specialist who advised removal of her jawbone and part of her facial bones, along with reconstructive surgery. It didn't take her long to reject that option, and this specialist took my father aside while shaking his head and giving her about six months to live.

That was over three years ago. Her oncologist told her Arimedex would slow the progression of the disease, so she takes that along with other therapies. She's had a long-term infection in her jawline due to the necrosis, and saw that specialist again to see what could be done about that. He was a little sheepish when she reminded him that here she was, still alive and kicking, not toes-up yet!

There's no doubt in my mind that if she had went with that guy's "solution", which is based on getting rid of all the cancer, instead of managing it---she'd be dead.

Quality of life. Improving the quality of life. Maintaining quality of life. If that were the focus, just think of the impact. Maybe there wouldn't be such a fear of illness, or disability, or aging.

Trinity said...


I'm not sure how old this post is, but:

In the case of Hep C, as far as the person's life goes, I'd agree that what really matters is that the virus is no longer ruining their life.

However, there *is* another factor: whether or not they can pass it on to others. Unlike cancer, Hep C (and HIV for that matter) are communicable diseases. It will always matter to some degree that people (who have intimate partners) have them, because transmission of them is bad.