CLL Drug Legislation

This is from Chaya Venkat of CLL Topics:

We have written before on the potential value of radioimmunotherapy (RIT) drugs such as Bexxar and Zevalin to CLL patients. In fact, we are monitoring with interest an important trial at the Hutchinson Cancer Center (Seattle) using Bexxar for MRD clearance in CLL patients. Here are links to our previous articles, for your quick reference:

Radioimmunotherapy is Underappreciated
Reimbursement cuts may sink RIT
Bexxar trial for CLL

With recent rulings by Medicare, we are in imminent danger of losing access to both of these drugs. Our sister organization www.lymphomation.org and its founder Karl Schwartz have been very active in trying to mobilize patient support for these two important drugs, and today is the day to make a couple of phone calls to your government representatives on this subject. I strongly urge you to support this initiative, and add your voice to the other patients trying to keep these therapy options for all of us. Please call Senator Max Baucus, as well as the senator from your state. The contact information is given below for your convenience. What should you say to these senators? Something along these lines, with as much gusto as you can muster:

“I am a cancer patient/caregiver and I'm calling about the CMS RULING that will cut reimbursement and therefore DENY ACCESS to potentially life saving radioimmunotherapy drugs Bexxar and Zevalin ... Please do what you can to fix this ruling before the end of the year. ....”

Senator Max Baucus (Montana) *
511 Hart Senate Office Bldg.
Washington, D.C. 20510
(202) 224-2651
(202) 224-0515 (Fax)
webmail: http://baucus.senate.gov/contact/emailForm.cfm?subj=issue

Majority Members

John D. "Jay"Rockerfeller IV (D-WV)
Jocelyn Moore: 202-224-6472

Kent Conrad (D-ND)
Lindsey Henjum: 202-224-2043

Jeff Bingaman (D-NM)
Frederick Isasi: 202-224-5521

John F. Kerry (D-MA)
Chris Dawe: 202-224-2742

Blanche Lincoln (D-AR)
Ashley Ridlon: 202-224-4843

Ron Wyden (D-OR)
Nicole Tapay: 202-224-5244

Chuck Schumer (D-NY)
Meghan Taira: 202-224-6542

Debbie Stabenow (D-MI)
Oliver Kim: 202-224-4822

Maria Cantwell (D-WA)
Dale Chung: 202-224-3441

Ken Salazar (D-CO)
Piper Su: 202-224-5852

Minority Members

Orrin Hatch ( R-UT)
Pattie L. DeLoatche : 202-224-6306

Trent Lott (R-MS)
Emily Chandler: 202-224-6253

Olympia J. Snowe (R-ME)
Bill Pewen: 202-224-5344

Jon Kyl (R-AZ)
Jennifer romans: 202-224-4521

Gordon H. Smith (R-OR)
Lindsay Morris: 202-228-5862

Jim Bunning (R-KY)
Holly Santry: 202-224-4343

Mike Crapo (R-ID)
Katie Oppenheim: 202-224-6142

Pat Roberts (R-KS)
Jennifer Swenson: 202-224-4774

John Ensign (R-NV)
Andrew Shaw: 202-224-6244

A Small Victory

"I think we should just declare victory and be done with the Fludarabine," is what the doctor said this morning. Dave's white blood cell counts were (once again) too low for chemo, even too low for Rituxan. It's been almost two months since he had his last (fifth) round of Fludarabine. Since that time, he's had a severe bout with Autoimmune Hemolytic Anemia, but that seems to have slowed, maybe stopped - the doc thinks it was the Rituxan that put the brakes on the anemia (plus wiped out a good chunk of white blood cells.)

So the new plan is to continue with the weekly blood tests and plan to give him Rituxan now and then, when his blood levels allow it. She didn't actually say, "now and then" - she proposed some complicated schedule that I didn't bother to write down because I'm 99 percent certain that it'll change before we get to it. The bottom line is that, unless some unexpected disaster happens in the next few weeks, Dave will get his next dose of Rituxan on December 5th. It could take months for his red blood cells to get near normal.

But he has an amazing capacity for adapting to the anemia. When we were in Los Angeles recently, he walked all over town with me, including up the steps at Angel's Flight (that's him, above, watching the parrots half-way up the hill.) We both took a lot of photos in L.A. Mine are up on my Flickr page now; Dave is still scanning his film and will probably post something later today. Dave's also writing for the new group blog, Bay Area Artquake!

I probably won't be updating this spot until Dave's next treatment (December 5th.) Meanwhile you can keep up with us at our usual spots:

Dave's Photo Blog
Dave's Flickr Page
Anna's Art Blog
Anna's Flickr Page

So Far, So Good

Dave seems to be holding on to his red blood cells this week. He feels pretty decent, and his Hematocrit yesterday was 24 - he hasn't been that high since July! If he ever gets up to normal (40 to 50) he's going to feel like Superman.

So we're going ahead with the Los Angeles trip - see you next week.