Fish Go Deep - The Cure And The Cause ( good version - jez )
At what cost "cure"?
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It's said that if aspirin were to go before the Food and Drug Administration (FDA) today, it would only be available by prescription and with a warning label as long as a child's arm. Lucky for all those with mild aches and pains, people were using aspirin long before the FDA was around.
Side effects are just a part of life when taking medications. I think most people can accept this idea by assessing the cost-to-benefit ratio. "I might get a little upset stomach, but this awful headache will be gone." Those of us with MS have had to make these kinds of decisions for some time now.
When the first disease-modifying drugs came on the market, we were so excited to have something, anything that might help, we were willing to accept a lot. The slight red spot at an injection site and the pain in the rear (literally sometimes) of giving oneself a shot were easy to get past. How many of us accept a near constant fever, the feeling of having the flu every other day or give up one weekend day to recover from a weekly dose? We did the math, and we accepted the risk. Then, out come the big guns.
IV drugs like the steroids and chemotherapy can make us fat, sick and nasty. We seem, however, to queue up for these treatments like they're candy when things get really bad.
So here we are today on the brink of a whole new type of drug therapy for MS - a method of treatment that is much more strategic than the old tactical weapons in our MS arsenal. The thing is, now some of us are going to die from these treatments.
I'm not fear-mongering. It seems to be accepted medical fact that until there is a clinical test for progressive multifocal leukoencephalopathy (PML), one in every thousand MS patients on the newest drug therapy will develop this deadly infection. For me, that means that nearly eight people in my MS community could lose their lives if we all were to go on the new drug.
Now, a one-in-a-thousand chance may be a slim chance. No doubt about that. A one-in-a-thousand chance of death, however, isnotdealing with a site reaction nor is it as temporary as "steroid rage." Assuming that the FDA allows (natalizumab) back on the market, we all have some serious decision making to do.
I know people who were on the drug during and after the trials, and most say that for as good as they felt the risk is worth the benefits. I offer this: It may be a decision we need to make with our families as well as with our doctors. We can suffer an itchy red spot or a fever alone. This new side effect is shared. We all need to ask, "At what cost cure?" -especially when it's only a treatment, not a cure.
As always I welcome your comments.
Wishing you and your family the best of health.
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