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Patients Against Lymphoma

 

ALERT: Hospitals grossly under-paid by CMS 
for providing Radioimmunotherapies
 
How to ask your Senators and Representatives for Help!

Last update: 12/05/2007

CMS stands for Centers for Medicare and Medicaid Services 
Calling: Step-by-Step
| Emailing: Step-by-step |
  Background Letter | Who To Contact 


Calling your Senator or Representative STEP-BY-STEP: 

Look up phone number of your Senator: http://www.senate.gov  
or Representative: http://www.house.gov/writerep/  (fixed)

  • Then call your senator / representative (or key Senator below) 
     
    Tell the receptionist: My name is [NAME]  
    Please direct my message to the health staff:

    I am asking the Senator to amend the CMS ruling to restore reimbursement rates for Bexxar and Zevalin to 2007 rates during 2008.  I / my friend / my loved-one needs this invaluable treatment for lymphoma - a common and sometimes fatal blood cancer.  
     

    ALSO Copy your message to our Group along with your name, city and state ...
    Email to bdeparry@gmail.com ... and we will bring a copy of your comment to Washington
    (This information will be put to no other use)

See Also Talking Points


Emailing your Senator - STEP-BY-STEP: 

Contact your Senator: http://www.senate.gov  
Contact your Representative: http://www.house.gov/writerep/  (fixed)

  1. Copy the text below into memory 
    (drag thru text, then press CTRL+C - Press and hold the Ctrl key, tap C, release both). 

  2. Then click in the email text box, or your representatives web mail system:

  3. Paste the text into the email by pressing Ctrl+V  
    (Press and hold the Ctrl key, tap V, then release both)

  4. Personalize the text as needed, then send the email.

== 
I am a patient with lymphoma [or a caregiver, or loved one, of a person diagnosed with lymphoma.]

I am contacting you regarding a CMS ruling that will have a devastating effect on the survival of patients with lymphomas.  The ruling is contained in CMS-1392-FC as it relates to Bexxar and Zevalin
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 the appropriate classifications. 
 
We and the patients who need these drugs, now and in the future, urge you to act 
swiftly, before this ruling takes effect on January 1, 2008
 
We and the patients who need these drugs, now and in the future, urge you 
to act swiftly, before this ruling takes effect on January 1, 2008
   

For background on the consequences of this ruling to patients, please see the Newsweek article
  of Nov 14: http://www.newsweek.com/id/70301 

==

ALSO Copy your message to our Group along with your name, city and state ...
Email to bdeparry@gmail.com  ... and we will bring a copy of your comment to Washington
(This information will be put to no other use)

See Also Talking Points


BACKGROUND
Regarding CMS Errors and the Agency's Apparent Indifference 
to the Survival of Lymphoma Patients and the Future of Radioimmunotherapies

Also see What is Radioimmunotherapy? & Outcome Data

We believe the matter described within directly affects the survival of patients with b-cell lymphomas, and that (as ASH has written) the ruling will have a chilling effect on the development of future drugs for all cancers. 

So we ask that you take time to review the relatively concise background information within; noting that we are very confident in our assessment that inaccurate data sources and inappropriate methods by CMS have resulted in payment rates to hospitals for RIT that are grossly inadequate.

The CMS ruling, if let to stand, will have grave consequences to patients.  

Our Senators, particularly those charged with oversight over CMS, must be made aware of the errors and the consequences.  It's our understanding that It is not yet too late, but that time is running out for patients who depend on this irreplaceable treatment option.


BACKGROUND:

"The payment rate as set forth in the ruling cuts payment for Bexxar to approximately one half its cost. Similar issues apply to Zevalin. This will force hospitals to choose between subsidizing or abandoning the treatment.

... The latter is most likely, as both the American Society of Hematology (ASH) and the American Society of Clinical Oncologists (ASCO), and others, have pointed out in letters to CMS during the comment period prior to the final ruling. ASH, in fact, states that

"It (the ruling) will eliminate one of the few treatment options and perhaps the only treatment option for some patients with non-Hodgkins lymphoma who have failed chemotherapy treatment."

CMS, in its final ruling, disputes this fear, saying that "given that the Medicare population is such a dominant portion of the population to which these services are targeted, we do not believe that hospitals will cease to provide the service."


With all due respect, how does CMS expect hospitals to provide any service for which they will lose money?

Additionally, CMS warns that "under 42 CFR 489.53(a)(2), CMS may terminate the provider agreement of any hospital that furnishes this or any other service to its patients but fails to also furnish it to Medicare patients who need it."

Surely no hospital will jeopardize its provider agreement. Thus, if these treatments are unavailable to Medicare patients, they will also be unavailable to anyone else.

As we understand it, the final reimbursement rate is based on previous hospital claims. CMS acknowledges that many claims were "incorrectly submitted" and "some represented unusually low costs." The agency also acknowledges that some claims were "incorrectly coded" and thus "unlikely to represent claims for treatment with the products described as A9543 and A9545" (Zevalin and Bexxar respectively).

Although CMS removed these "likely incorrectly coded claims in the rate setting process," CMS cannot be sure which claims were coded correctly and which were not. Using data that was known to be flawed, the new rate could not have been set accurately.

Furthermore, under the Medicare Prescription Drug, Improvement and Modernization Act of 2003 (MMA), the BEXXAR Therapeutic Regimen was classified as a "specified covered outpatient drug" (SCOD) and the statute directs that CMS must pay for SCOD's at either "the average acquisition cost for the drug for that year" or "if hospital acquisition cost data are not available, the average price for the drug in the year established."

I am not an attorney, but the statute does not seem to authorize CMS to set rates based on an average of claims, much less ones that are known to be inaccurate. The methodology used to set this rate was flawed, incorrect, irresponsible and may not even comply with the statute.

One thing is certain. The new rate will have long term and devastating consequences. It will undoubtedly condemn these drugs to medical history. Millions of dollars and years of hard work will have been wasted, and several scientists and organizations fear that it will create a disturbing disincentive for the development of future innovative therapies. 

... ASH states, "It (the ruling) could have a chilling effect on the development of future drugs and radiopharmaceuticals for treating other forms of cancer and other diseases."

As a representative of many thousands of lymphoma patients and caregivers, I can add that we are fearful and confused by this ruling. We also feel that the system does not provide an adequate forum to express our concerns and to address the methods used by CMS.

It's also important for the public, our representatives, and the media to know how efficacious RIT can be, even in heavily pretreated patients so we have attached a link to our letter to CMS which includes abstracts on RIT showing it's efficacy in pretreated patients.

On a personal note, I believe that my spouse, Joanne, would not be alive and disease-free today - 3 years in remission with no evidence of disease - without radioimmunotherapy. Joanne was diagnosed in 1996, her first remission from CHOP chemotherapy lasting only 6 months. Importantly, durable complete remissions in a sizable percentage of patients with recurring disease have been reported across multiple clinical studies.

It's our understanding that if the CMS ruling is not amended within weeks it cannot be done later.  For this reason we bring this matter to your urgent attention, because only a Senator has the power to influence CMS at this juncture noting that CMS has not provided a venue for public comment on the final decision and has not answered our calls or letters.

Finally, we note that it is possible for CMS to amend the ruling, as it has been done at this stage for PET imaging.  

We assure you that your constituents will very grateful for representing cancer patients in this urgent matter.  We remind that one in three men will get a serious cancer in their lifetime, and one in two women.  Thus, this ruling, based on inaccurate data and methods, if left to stand, will have negative consequence on every American family.

Sincerely,


Karl Schwartz (caregiver) & Betsy de Parry (lymphoma survivor)

Karl Schwartz is President and cofounder of Patients Against Lymphoma
  Patient Consultant to the FDA/Oncologic Drug Advisory Committee (ODAC)
  Participant: NCI Progress Review Group for Blood Cancers (LMPRG)
  Participant: Biospecimen Access and Ethical, Legal, and Policy Issues Workshop (ELP)
  Participant: Custodianship and Ownership Issues in Biospecimen Research Symposium-  Workshop 

REFERENCES

* Patients Against Lymphoma's letter to CMS: 
http://www.lymphomation.org/CMS-RIT.pdf 
For more detail on CMS data sources, methods, and consequences to patients
 


WHO TO CONTACT (updated Nov 21)

You might tell the receptionist: My name is [NAME]  
Please direct my message to the health staff:

I am asking the Senator to amend the CMS ruling to restore reimbursement rates for Bexxar and Zevalin to 2007 rates during 2008.  I / my friend / my loved-one needs this invaluable treatment for lymphoma - a common and sometimes fatal blood cancer.  

 

=KEY SENATORS (updated Nov 28)

* indicates what we believe to be most important contacts.
** also on committee

From Senate Finance Committee (202) 224-4515 
Subcommittee on Health Care:
http://www.senate.gov/~finance/sitepages/subcommittees.htm  

Senator Jay Rockefeller (WV) (Chair) *
531 Hart Senate Office Building
Washington D.C. 20510
202-224-6472 
 Fax 202-224-7665
 Fax 304-347-5371 (Local Office)
WebMail: http://rockefeller.senate.gov/services/email.cfm
 
Senator Orrin G. Hatch (UT) Ranking Member *
104 Hart Office Building
Washington, DC 20510
Tel: (202) 224-6306 
Fax: (202) 224-6331
Fax: (801) 524-4379 (Salt Lake City office)
Webmail: http://hatch.senate.gov/index.cfm?FuseAction=Offices.Contact
 
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  
 
Senator John Kerry (MA) *
304 Russell Bldg.,  Third Floor
Washington D.C. 20510
(202) 224-2742 
Fax: 202-224-8525 (DC)
Fax: 617-248-3870 (Boston office)
webmail: http://kerry.senate.gov/contact/email.cfm 
  
Senator Mary Cantwell (WA) *
(Thank Senator Cantwell)
511 Dirksen Senate Office Building
 Washington, DC 20510
 202-224-3441 
 Fax:  202-228-0514
Webmail: http://www.cantwell.senate.gov/contact/ 
    
Senator Charles Grassley (IA) *
135 Hart Senate Bldg.
Washington, DC
 202-224-3744
Fax: (319) 363-7179 (Cedar Rapids)
webmail: http://grassley.senate.gov/public/index.cfm?FuseAction=Contact.Home
 
Senator Debbie Stabenow * 
(Thank Senator Stabenow!)

133 Hart Senate Office Building
Washington, DC 20510
Phone: (202) 224-4822
Fax: 202-228-0325
e-mail: senator@stabenow.senate.gov  
 
Senator Olympia J. Snowe (ME) *
154 Russell Senate Office Building
Washington, DC 20510
Phone: (202) 224-5344
Toll Free: (800) 432-1599
Fax: (202) 224-1946
Fax: (207) 874-7631 (State office)
Webmail: http://snowe.senate.gov/public/index.cfm?FuseAction=ContactSenatorSnowe.Email 
 
Senator Mike Crapo (R - ID) *
239 DIRKSEN SENATE OFFICE BUILDING
WASHINGTON DC 20510
(202) 224-6142
Fax: 202-228-1375
webmail: http://crapo.senate.gov/contact/email.cfm
  
Senator Charles E. Schumer- (D - NY) **
313 HART SENATE OFFICE BUILDING
WASHINGTON DC 20510
(202) 224-6542
Fax: 202-228-3027
webmail: http://schumer.senate.gov/SchumerWebsite/contact/webform.cfm  
 
Senator Jon Kyl (AZ) **
730 Hart Senate Building
Washington, D.C. 20510
Phone: (202) 224-4521
Fax: (202) 224-2207
Fax: (602) 957-6838 (Phoenix office)
webmail: http://www.kyl.senate.gov/contact.cfm 
 
Senator Ron Wyden (OR) **
223 Dirksen Senate Office Building
Washington, DC 20510-3703
(202) 224-5244
Fax: 202-228-2717
webmail: http://www.wyden.senate.gov/contact/  
 
Senator John Ensign (NV)
119 Russell Senate Building
Washington, D.C. 20510
Phone: (202) 224-6244
Fax: (202) 228-2193 (DC)
Fax: (702) 388-6501 (Nevada office)
webmail: http://ensign.senate.gov/forms/email_form.cfm
 
Senator Blance Lincoln (AR) **
355 Dirksen Senate Building
Washington, D.C.20510-0404
202-224-4843
Fax: 202-228-1371 (DC)
Fax: (501-375-7064 (State office)
Webmail: http://www.lincoln.senate.gov/webform.html
 
Senator Ken Salazar **
702 Hart Senate Office Building
Washington, D.C. 20510
202-224-5852
Fax 202-228-5036 (DC)
Fax: 719-542-7555 (State)
webmail: http://www.salazar.senate.gov/contact/email.cfm
 
Senator Pat Roberts (KS) **
109 Hart Senate Office Building
Washington, DC 20510-1605
Phone: 202-224-4774
Fax: 202-224-3514 (DC)
Fax: (785) 235-3665 (Topeka, KS)
webmail: http://roberts.senate.gov/public/index.cfm?FuseAction=ContactInformation.EmailPat 
  
Senator Jim Bunning (KY) **
316 Hart Senate Office Building
Washington, DC 20510
Main: 202.224.4343
Fax: 202.228.1373 (DC)
Fax: 270.881.3975 (local)
webmail: http://bunning.senate.gov/public/index.cfm?FuseAction=Contact.ContactForm 
 

 

NOTE: FOCUS ON SENATOR LISTED ABOVE THRU DEC 4th

OTHER KEY SENATORS:

 
Senator Edward Kennedy (Chair) (MA)
317 RUSSELL SENATE OFFICE BUILDING
WASHINGTON DC 20510
(202) 224-4543
Web Form:  http://kennedy.senate.gov/senator/contact.cfm   

Senator Tom Harkin (IA)
731 HART SENATE OFFICE BUILDING
WASHINGTON DC 20510
(202) 224-3254 Fax: 202-224-9369
Web Form: http://harkin.senate.gov/c/ 

Senator Arlen Specter
(Appropriations Committee)
711 HART SENATE OFFICE BUILDING
WASHINGTON DC 20510
(202) 224-4254
Fax: 202-228-1229
webmail: http://specter.senate.gov/public/index.cfm?FuseAction=Contact.ContactForm 

Senator Barbara Mikulski (MD)
503 Hart Senate Office Building, Washington, D.C., 20510
Phone: (202) 224-4654
Fax: (202) 224-8858
http://mikulski.senate.gov/mailform.html 
 

SENATOR KAY BAILEY HUTCHISON
284 Russell Senate Office Building
Washington, DC 20510-4304
202-224-5922
202-224-0776 (FAX)
Webmail: http://hutchison.senate.gov/contact.html 
   

Senator Hillary Rodham Clinton
United States Senate
476 Russell Senate Office Building
Washington, DC 20510
Phone: (202) 224-4451
General Fax: (202) 228-0282
Scheduling Req Fax: (202) 228-0121
TTY/TDD: (202) 224-6821
webmail: http://clinton.senate.gov/contact/webform.cfm
 
Senator Christopher Dodd (CT)
448 Russell Building | Washington D.C., 20510
Tel: (202) 224-2823
Fax: (202) 224-1083

Senator Herb Kohl,  (D - WI)
330 HART SENATE OFFICE BUILDING
WASHINGTON DC 20510
(202) 224-5653
http://kohl.senate.gov/gen_contact.html
 
Senator Jeff Bingaman (NM)
703 Hart Senate Office Bldg.
United States Senate
Washington, D.C. 20510
(202) 224-5521
webmail: http://www.bingaman.senate.gov/contact/types/email-issue.cfm  


  • ACTION STATEMENT: (amended 11/28) 
    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 the appropriate classifications. 
     
    We and the patients who need these drugs, now and in the future, urge you to act 
    swiftly, before this ruling takes effect on January 1, 2008.

= LOCATE YOUR SENATORS:
http://www.senate.gov/general/contact_information/senators_cfm.cfm 

=CONTACT THE MEDIA

1) To locate media contacts in any state: 
http://tinyurl.com/2u6r6z 

2) Select a news media you think will be responsive and 
influential.
3) Copy one of the headlines below.
4) Copy your letter or story.
5) Copy link to background information:
http://www.lymphomation.org/CMS-call.htm#background  
6) Submit your request for help. 

 

=OTHERS TO CONTACT:

Herb B. Kuhn
Deputy Administrator
Centers for Medicare and Medicaid Services (CMS)
Department of Health and HumanServices
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, DC 20201 
Herb.Kuhn@CMS.hhs.gov
  

Kerry Weems, CMS 
Acting Administrator 
Kerry.Weems@CMS.hhs.gov
   
(Email to say you oppose this ruling)


= LOCATE YOUR SENATORS:
http://www.senate.gov/general/contact_information/senators_cfm.cfm 

Write to the Key Committee:
Health, Education, Labor and Pensions Committee
About: http://help.senate.gov/About.html 
Email: help_comments@help.senate.gov 
(Email to say you oppose this ruling)


=CONTACT THE MEDIA

1) To locate media contacts in any state: 
http://tinyurl.com/2u6r6z 

2) Select a news media you think will be responsive and 
influential.
3) Copy one of the headlines below.
4) Copy your letter or story.
5) Copy link to background information:
http://www.lymphomation.org/CMS-call.htm#background  
6) Submit your request for help. 

MEDIA HEADLINES 
(suggestions appreciated):

Pick one: 

* CMS Indifferent to Patients with Lymphoma
Ruling based on Grossly Inaccurate Data
Will Lead to Unnecessary Deaths This Year

* Oncology Societies Predict CMS ruling Will Lead to 
Unnecessary Deaths 
Patients Making Desperate Appeals to Senators with
Oversight over Medicare Agency

* CMS Forces Hospitals to Subsidize Radioimmunotherpies
Ruling Based on Grossly Inaccurate Cost Data
Patients with Lymphoma Will Be Denied Access 
to Life Saving Therapy

* Senators Silent (So Far) 
CMS (Medicare) Ruling Will Lead to Unnecessary Deaths
Jeopardizes Future of Radioimmunotherapy
ASCO and ASH cite Inaccurate Data Sources

* CMS Ruling Based on Inaccurate Data
Could Spell End of Radioimmunotherapy
A Life-Saving Treatment for Lymphoma

* Lymphoma Patients Let Down By CMS
Cite Inaccurate Data Sources
And Devastating Impact on Survival
Make Desperate Appeals to Senators

* Medical Science Let Down By CMS
Inaccurate Data Sources
Leads to Grossly inadequate Payments
To Hospitals for Effective Targeted Therapy 

 
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.