About Lymphoma | Advocacy | Art | CAM | Clinical trials | Doctors - Experts - Centers | Guidelines at Diagnosis | News
Risk Factors | Side Effects | Statistics | Support | Symptoms | Tests | Treatments | Types of Lymphoma

Search Site         Guidelines at Diagnosis | About Clinical Trials            How to Help!

Patients Against Lymphoma


Advocacy Extend ruling to require CMS to provide 
full reimbursement for Radioimmunotherapy

Last update: 08/12/2010

Quick steps: 
(1) Find your Senator then 
(2) Thank your Senator for including payment for radioimmunotherapy
(RIT) in the Medicare bill you passed last December.  But also urge your Senator to re-visit the Medicare bill at his or her earliest convenience;  to find common ground. Remind that this bill is the vehicle which can extend payment for radioimmunotherapy (Zevalin and Bexxar), a treatment which is critical, in some cases, to the very survival of lymphoma patients. Please act quickly – lives are depending on it. (Copy message below)

Dear Friends,

Unfortunately, the Medicare bill passed by the House, which would have extended payment for RIT, did not pass on Thursday night. It failed in the Senate by two votes.

As you all know, the current legislation for reimbursement for Radioimmunotherapy (RIT – bexxar / zevalin) expires on June 30. This means that reimbursement will automatically default to the original rate which is approximately one half the cost – and patients may no longer have access to RIT in two days.

There were several versions of the Medicare bill which included many issues on which the parties were divided. * Importantly, ALL versions included the RIT extension so we know that Congress understands and agrees with our concerns. Our issue was simply a "small" one among many others in a large bill, but we URGENTLY need this Medicare bill to pass since it is the “vehicle” to save RIT and ensure access to patients who may need it. Our job is to remind our representatives about the urgency. Please read on.

Congress has now adjourned for Fourth of July vacation and will reconvene on July 8, at which time we hope they will re-visit and pass a Medicare bill as soon as they return so that there would be only a matter of days that RIT is not be fully funded.

And so we once again ask for your help ... noting that without YOUR actions - the clear, persistent and reasoned voice of the patient community - CMS policy would never have been overruled by an Act of Congress!

We again need to send messages to our Senators next week so that they will read about our concerns when they return. Please spend 10 or 15 minutes to carry out the instructions that follow.

IMPORTANT: the Senate staffers have done an **excellent** job of fighting for RIT. This is not their fault and so we don’t want to offend them in any way. This is why we want to email the senators directly, through their websites.

So - as soon as possible, we urge you to locate and email your two senators - and to also pass this message along to your friends and family members asking them to do likewise.

To make this action as easy as possible, we’ve drafted a message (below) that you can simply cut and paste….or feel free to write your own. Complete instructions follow with thanks, in advance, for helping our representatives to see what's at stake.

=Step 1:

To Find your senator:

You’ll notice under each senator’s name, there is a link to a “Web Form.” Click there to go directly to your senator’s contact page. There you can fill in the blanks along with your message and hit send – quick and easy! Note: Some senators do not accept messages from people who live outside their states. We recommend you contact senators from your own state.

=Step 2:

Feel free to cut and paste the message below or write your own:

MESSAGE to copy:

I am writing to thank you for including payment for radioimmunotherapy (RIT) in the Medicare bill you passed last December. Your action reversed a CMS ruling that would have severely limited, or even denied, patient access to these life-saving treatments.

I am also writing to thank you for including payment for RIT in the Medicare bill which expired on June 30. However, I am deeply distressed that the bill failed to pass before the recess. I understand that there were many issues in the bill upon which the majority could not agree, but without its passage, reimbursement for radioimmunotherapy treatments (Bexxar and Zevalin) will default to the CMS Final Rule, at a rate of approximately one half the cost of these treatments. This means that patients’ lives are now at risk.

I would therefore urge you to re-visit the Medicare bill at your earliest convenience and to find common ground upon which the majority can agree. This bill is the vehicle which can extend payment for radioimmunotherapy, a treatment which is critical, in some cases, to the very survival of lymphoma patients. Please act quickly – lives are depending on it.

Thank you!

Betsy de Parry & Karl Schwartz
Patients Against Lymphoma

PS: To see how your senator voted on the entire bill:



Media and Actions

Grassroots effort pays off: Medicare Act 
includes Legislative fix that will save RIT! 
House votes 417 to 3 to

* * * * * * * * APPROVE! * * * * * * * *

House and Senate Pass Medicare Legislation to Freeze 2008 Reimbursement for Therapeutic Radiopharmaceuticals at 2007 Levels

"We applaud law makers for responding to the concerns of patients and providers regarding these important therapeutic options for treating patients with this deadly disease," said CTI President and CEO James A. Bianco, M.D. "This legislation will maintain the status quo and provide the drug manufacturers the opportunity to work with CMS on developing an equitable methodology for reimbursing therapeutic radiopharmaceuticals."

NEW:  Agenda for Feb 2008 Meeting with Mr. Kuhn 
regarding CMS / RIT:
CMS cover Letter | Report

  PAL: Letter to CMS & Overview | Patient-driven | What's at Stake | We're not asking for charity |
Your Help is Needed | Will Washington Sentence Lymphoma Patients to Death?
ASH comment: "will eliminate one of the few treatment options
Cheerful Oncologist: Medicare to Lymphoma Patients: Drop Dead! 
 Terrisig science blog: CMS tells Lymphoma Patients to go to Hell   
NPR: Medicare Balks at Paying for Lymphoma Drug
ABC News: New Medicare Rules Bar Cancer Drugs for Patients 
NY Times: Medicare Cuts Payout on 2 Cancer Drugs
Newsweek: How Washington Is Nixing a Cancer Cure
ASCO report: Cost-effectiveness Bexxar 2007
ASH report: Cost effectiveness of Zevalin for refractory NHL 
Motley Fool: Medicare whacks oncology drugs 
See Dr. Wahl's comments on Sec Leavitt's blog  http://secretarysblog.hhs.gov/

Mark S. Kaminski, MD, Professor of Internal 
Key issues in CMS rulings on radioimmunotherapy drugs for lymphoma


Each clinical organization (ASCO, ASH) and every expert in the field whose has commented on the CMS final and proposed ruling (CMS 392-FC) has said the same thing: the CMS ruling, based on inaccurate data sources and incorrect classifications, will force hospitals to choose between subsidizing or abandoning these invaluable treatments. Unless corrected, the ruling will limit or deny patient access to this highly effective treatment, and puts at risk the future of targeted therapies for all cancers.

We agree with the  experts:  that the low payment policies for RIT will have a “devastating” effect on lymphoma patients living with the disease today, on future patients, and on cancer research in general.


ACTION NEEDED: Please amend the ruling to restore reimbursement rates for Bexxar and Zevalin to 2007 rates during 2008.  This will allow CMS the time it needs to collect the necessary data to base reimbursement rates for 2009 on accurate data and appropriate classifications. We and the patients who need these drugs, now and in the future, urge you to act swiftly, before the ruling takes effect on January 1, 2008.

Our LETTER to CMS & Web Letter  | ENDORSE OUR LETTEROur Letter to Senator Kennedy

Tell President Bush about your concerns. Call: 1-202-456-1111
Refer to CMS (Medicare) final ruling 1392, which severely cuts reimbursements to hospitals for Zevalin and Bexxar, invaluable / vital / irreplaceable therapies for the treatment of lymphomas - therapies that can induce durable remissions - even in patients who have failed prior chemotherapies.

We think it's best if you use your own words.
If it feels right, you might say that Michael Leavitt's was appointed by President Bush, and that Secretary Leavitt disregarded expert guidance (ASH, ASCO, Oliver Press, Dr. Wahl, .... ) on the consequences of this ruling to lymphoma patients ....and on the chilling effect on the development of future drugs for all cancers.

 Our fight for survival is not over and the BIGGEST NEED AT THIS TIME is for Patients, 
Caregivers, Family, and Loved Ones to call  and fax our  representatives (see Key Senators)  Please also use the ACTION section that follows: 


Letters &
In the News
ASH Comments
Our lives!
Betsy's Blog: Will Washington Sentence Lymphoma Patients to Death?
PAL Letter protesting CMS Final Ruling - faxed with Petition
Medicare to Lymphoma Patients: Drop Dead!  /scienceblogs
WSJ blog
PAL Letter to CMS
Sep 11, 2007
 PAL: We are Not Asking for Charity  

Our Holiday Greetings to Congress  PDF 

NPR covers our story:  npr.org/
New Medicare Rules Bar Cancer Drugs for Patients  - abcnews.go.com
Medicare Cuts Payout on 2 Cancer Drugs   By ALEX BERENSON NYTIMES
Newsweek Story Breaks!
Medicare & Medicaid Ruling Limits, If Not Eliminates, Key Treatment Option  for NHL
Source LRF
Action necessary 
Source: LLS
* PBS audio: 
Cutbacks upset Lymphoma suffers / experts - Requires Realplayer
Medicare whacks oncology drugs Report - Motley fool




Key Senators 

Talking Points

Data on Durable Remissions/Cures? with RIT

Practical and clinical benefits of RIT EDITORIAL  - PDF

Cost-effectiveness Bexxar  ASCO 2007

Cost effectiveness of Zevalin for refractory NHL-  ASH



Keep calling and faxing your senators and  Key Senators and Representatives 
Your personal stories
from constituents
are best!


  Sign our Petition 
COUNT: 4,016
(but only if you have not already endorsed our letter to CMS before) 
Add your comments 
to our blog: What's at Stake: Our lives!

 Holiday Greeting
to Fax to your Senators



The battle is not over, but many thanks are due to the individual patients and caregivers who spoke out and contacted their representatives,  to the non-profit organizations for their timely and cooperative response, to the clinical scientists who wrote strong letters, and to Betsy de Parry for alerting everyone about this crisis in September of 2007 - and for her capable tenacity.




Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
Patients Against Lymphoma, Copyright © 2004,  All Rights Reserved.