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Patients Against Lymphoma



Last update: 07/23/2015

"It is sometimes supposed that the silent witness is, through silence, an
approving party to what he observes."
~ Rae Langton

Also see  Advocacy tools | Advocacy Perspectives | Legislative Item of Interest

Legislative item of interest

Leading experts prescribe how to make cancer drugs more affordable http://ift.tt/1GF5xh0 

"High cancer drug prices are affecting the care of patients with cancer and our health care system," says lead author Ayalew Tefferi, M.D., a hematologist at Mayo Clinic. "The average gross household income in the U.S. is about $52,000 per year. For an insured patient with cancer who needs a drug that costs $120,000 per year, the out-of-pocket expenses could be as much as $25,000 to $30,000 - more than half their average household income."

* A Petition of Congress to address Unaffordable Cancer Drug Prices –
Change.org http://chn.ge/1fozGeK 



H.R. 460: Patients’ Access to Treatments Act of 2013 http://bit.ly/1LeTZcW

Text of H.R. 460: Patients’ Access to Treatments Act of 2013 -  http://bit.ly/1x6bLsB

Key snip: A [insurance plan] that provides coverage for prescription drugs ... shall not impose cost-sharing requirements applicable to prescription drugs in a specialty drug tier that exceed the dollar amount (or its equivalent) of cost-sharing requirements applicable to prescription drugs in a non-preferred brand drug tier (or prescription drugs in a brand drug tier if there is no non-preferred brand drug tier).


Let your lawmaker know you live in their district.

State your issue at the beginning of the letter.

Try not to exceed one page.

Let your elected official know how this issue affects you personally.

In closing, ask for a written response to document your lawmaker's positions.

PAL: Trial design - proposing the PCT as an alternative to the RCT
PAL: Reasons for drug shortages, proposed solutions and related articles
Call the National Bone Marrow Donor program at  800 MARROW2 and become a registered donor.

Call now!
IV / oral - The Columbus Dispatch: Cancer drugs should be treated equally

“It’s disturbing to think that this inequity in coverage [for oral versus IV administered drugs] may keep patients from receiving the most-effective treatment available for their cancer.”


Our Letter to CMS on need to amend reimbursement policy for radioimmunotherapy
Urging GSK to maintain timely patient access to Bexxar PAL
Advocacy Success:  Resolution 143 to make September Blood Cancer Awareness Month. 

The law passed! Please thank your representatives.
Patients Against Lymphoma - letter to CMS on Radioimmunotherapy reimbursement policy  2009-CMS-letter.PDF 

"While PAL supports the Proposed Rule policy of using ASP (Average Sales Price) methodology, we respectfully request that claims default to cost-to-charge per MIPPA rather than hospital claims. This would give patients the “safety net” we need for continued access to these lifesaving drugs should a default claims procedure be necessary."
June 2008 - Action Needed!
See RIT Action Alert
NEW: CMS ruling on RIT
Permanent Solution still needed
Agenda for Feb 2008 Meeting with Mr. Kuhn 
regarding CMS / RIT
CMS cover Letter | Report

HISTORY ACTION page: Medicare Ruling will Limit if not Eliminate INVALUABLE Therapies 
National Biospecimen Network
ACTION ALERT: The Senate is now debating legislation that would jeopardize insurance coverage for cancer patients. It will take you less than one minute to send a letter (composed by the Leukemia and Lymphoma Society) to express your concern.  
For patients and doctors affected by Hurricane Katrina
   NCI's Cancer Information Service:  1-800-4-CANCER (1-800-422-6237)

   ASCO: Oncology practices in the Gulf Coast and across the country open and able to treat people    with cancer who have been dislocated and are in need of acute care.  www.asco.org/katrina

Advocacy Alert:  Please read and endorse our letter concerning CMS policy that would limit coverage of off-label use of cancer drugs
Please review our perspective on why we must support The National Biospecimen Network in order to  facilitate rapid and significant progress against lymphomas and all other cancers 
Will Medicare/Medicaid reimburse for Zevalin and Bexxar? Status of decision here.
Also how to make public comment about off-label use of these agents, which could be very important to folks with MCL, and CLL/SLL, etc.   cms.hhs.gov
Act Now: Support Full NIH Funding for Medical Research
State Coverage for Health Care Costs for Clinical Trials? 

How Does Your State Measure Up?
Picture A Cure: Putting
 A Face On Cancer - ACS Advocacy Action
"what if you could combine the ease of writing a letter with the impact of meeting face-to-face? You can through our advocacy tool “Picture A Cure.”
New Medicare policy will deny access to novel therapies, including treatments that win approval based on surrogate endpoints. 

Click here to act
FDA Transparency
A challenge to both Congress and the FDA to permit public disclosure at critical times in drug development for deadly diseases. 

  Click here to act

H.R. 460 - Patients' Access to Treatment Act of  2013

Enter your Zip code below ... to express your views on on this or any matter.  Ultimately, it's the number of people who weigh in on an issue (not what is said) that inspires our elected representatives to action.


<== See background on left and tips.

Tools for Research Advocacy 


Advocacy perspectives  | Old and New
Advocacy resources


Tools and Resources for Policy Advocates:



Advocacy Tools

Contact links | Contact tips 
Contact your reps
How to address letters
White House e-mail contacts 

Alternative ways to write your representatives

We are looking into the problem:
Click here to write to your representatives.
Click here to write to your senators


An Advocate's Perspective (compiled)  PAL


Advocacy Groups non-profit groups involved in the Blood Cancer Coalition and other good works.


Combining Forces
the importance of working together to fight for common goals


Conflict of Interest  
and how it can creates biases, erode trust, and sometimes compromise our ability to make progress against the disease


Famous People with Lymphoma
helping to raise awareness


Health issues on Congress.org
AlertsSoap Box | Letters | Votes | Bills | Regulations | Orgs


Lymphoma Statistics 
when you need facts to make the case


National Biospecimen Network


Opportunities and Challenges
in FDA Evaluations of New Drugs
Patient Perspectives 


Patient Perspectives
an archive of issues and commentary  


State Coverage for Health Care Costs for Clinical Trials
How Does Your State Measure Up?


The PRG Plan
 Progress Review Group Plan 
developed by esteemed experts and patient advocates


Institute of Medicine report ‘Quality Chasm’ PDF


Understanding Clinical Trial Design: PDF
A Tutorial for Research Advocates

Authored by Jane Perlmutter, PhD
for Research Advocacy Network’s Advocate Institute


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.