I'm posting this e-mail message here as a public service to other patients with forms of NHL that are potentially treatable with the radioimmunotherapy (RIT) drugs Bexxar and Zevalin. Betsy de Parry, a lymphoma survivor and activist, is inviting comments on her blog, which lobbyists in Washington can use to tell Congress about real cases like ours. If you have NHL and are concerned about the possible disappearance of RIT drugs like these, please visit Betsy's blog and post a brief comment there, including basic details of your situation.
(Scroll down to my November 14th entry for more on this issue. I'm including another link to the Newsweek article by Jonathan Alter, that explains this complex issue. CLICK HERE for that article.)
Thanks!
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Hi All,
As you all know by now, Bexxar and Zevalin are seriously threated. I've been talking, almost daily, with lobbyists in Washington who are working to have the ruling overturned, and they are telling me that hearing from patients is helping them to convince the staffers. They suggested posting a blog and asking people to make comments which they could then print and take to their meetings.
Thus - if any of you want to voice your opinion - short and sweet is fine - you can do so on my blog which is at www.lymphomablog.blogspot.com
We have very little time to accomplish this mission - if the ruling is not overturned by 12/31, it takes effect on January 1. So, language has to be written into a bill which then has to pass before 12/31. Let's hope that push/pull/shove politics doesn't stand in our way.
Thanks so much,
Betsy
P.S. Ok, this is a long shot, but several people, including senator's offices, have said that good old-fashioned protests work because the press usually picks up the story - and what could be more heartbreaking than cancer patients pleading for drugs to save their lives? Karl Schwartz is organizing one for next Thursday in front of Senator Specter's office in Pennsylvania. Does anybody want to think about going to Lansing and protesting in front of Stabenow's office? I'll do it if at least 9 or 10 others want to join. Or in any of your own states?
Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.
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1 comment:
I would do a Madison protest if there are other Wisc folks who would. Any takers?
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