(1) Find your Senator
(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
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
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.
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.
Feel free to cut and paste the message below or write your own:
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
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.
Betsy de Parry & Karl Schwartz
Patients Against Lymphoma
PS: To see how your senator voted on the entire bill:
Grassroots effort pays off: Medicare Act
includes Legislative fix that will save
House votes 417 to 3 to
* * * * * * * * APPROVE! * * * * * * * *
and Senate Pass Medicare Legislation to Freeze 2008
Reimbursement for Therapeutic Radiopharmaceuticals at 2007
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
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
Will Washington Sentence Lymphoma Patients to
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
NY Times: Medicare Cuts Payout on 2 Cancer Drugs
Newsweek: How Washington Is Nixing a Cancer Cure
ASCO report: Cost-effectiveness
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/
S. Kaminski, MD, Professor of Internal
Key issues in CMS rulings on
radioimmunotherapy drugs for lymphoma
CMS RULING will DENY
ACCESS to INVALUABLE CANCER THERAPY
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.
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
OUR LETTER | Our 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
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: