Except... In addition to maxing out my health insurance deductible every year since my 2007 MS diagnosis, I've been keeping notes and saving an inch-thick stack of medical records to remind myself of some things that that have hurt my health and just really angered me. To sum up what's wrong with health care, and MS treatment in particular, I defer to the old journalist axiom; follow the money. My story is surely a microcosm of a larger problem. My abbreviated MS treatment 1-year diary follows.
March 2013: How Teva, Biogen and FDA probably put me in a wheelchair
The oral drug BG-12 was supposed to be FDA-approved and ready for me to use by March 2013. I needed BG-12 to help me transition off Biogen Idec's infusion drug, Tysabri. Tysabri had stabilized my MS for two years, but a blood test in August 2012 had showed the drug was seriously threatening to give me a deadly brain infection called PML. My neurologist's plan was to safely wash me out of Tysabri and start BG-12 as a replacement. His logic seemed prudent, so I agreed.
But then Teva Pharmaceuticals gamed the FDA to delay BG-12 approval.
http://www.bloomberg.com/news/2013-01-10/teva-cites-bg-12-safety-in-asking-fda-to-add-ms-reviews.html
The FDA delay preserved another quarter of market share for Teva's old first-line MS drug, Copaxone. Teva made millions of dollars off this gambit. I'm sure they did not care even a little bit that their brilliantly orchestrated delay tactic caused thousands of patients to suffer longer with painful Copaxone injections, or me to become wheelchair-bound from a vicious MS attack.
June 2013: An expensive emergency
The resulting MS attack manifested in my legs and torso being locked up in excruciating spasms. Vision and hand coordination also suffered severely. Ataxia and incontinence became an issue. It was hard to do my job as a freelance PR writer and I lost many billable hours, not to mention an entire summer of Minnesota sailing, camping and summer festivals with friends.
The initial rescue treatment to release the spasms was a drug called Acthar. But why $28,000 for ONE week of what is basically hog adrenaline injections? I needed two weeks of Acthar to start recovering from my MS attack. Wait until you see how much the same drug used to cost.
http://www.fiercepharma.com/story/135m-rights-deal-questcor-locks-rival-its-pricey-acthar-drug/2013-06-17
September 2013: The outrageous remarketing of Campath -- Why I'm not waiting for Lemtrada
Instead of doing HSCT, my neurologist recommended I wait for FDA approval of a "new" MS drug called Lemtrada, expected sometime in 2014. Hmm, wait for FDA approval... where had I heard that before? Then I learned about the drug side effects and where Lemtrada came from and I got angry again. Sanofi thinks it can hold MS patients and their insurers over a barrel for a huge markup of an old drug. And they'll probably get away with it.
http://www.fiercepharma.com/story/sanofi-pulls-campath-clear-way-higher-priced-lemtrada/2012-08-21
http://www.healthline.com/health-news/ms-why-are-ms-drug-prices-so-high-071913
MS is hellishly expensive for patients and very profitable for drug companies. With billions at stake, how hard do you think these companies will actually work for a cure? How hard might they scheme and lobby the FDA to delay a cure? I'm not a crazy conspiracy theorist. I've just watched and experienced MS market dynamics in action, and know that I'm very tired of being a cash cow. Bring on the HSCT chemo.
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