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Patients Against Lymphoma

 

Advocacy

Last update: 06/04/2014

Also see  Advocacy tools | Advocacy Perspectives

Action Center
 


A Legislative item of interest to patients:

H.R. 1801: Cancer Drug Coverage Parity Act of 2013
https://www.govtrack.us/ 

To require group and individual health insurance coverage and group health plans to provide for coverage of oral anticancer drugs on terms no less favorable than the coverage provided for anticancer medications administered by a health care provider (such as by IV).

See background articles

Tips:

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.

Let your lawmaker know you live in their district.

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

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

Call now!
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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.”

ARCHIVED

PAL:
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

ADVOCACY HISTORY
HISTORY ACTION page: Medicare Ruling will Limit if not Eliminate INVALUABLE Therapies 
 NBN!
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
 
"It is sometimes supposed that the silent witness is, through silence, an
approving party to what he observes."
~ Rae Langton
 

Legislative Item of Interest

H.R. 1801 - Federal Cancer Drug Coverage Parity Act of 2013

Write to Your Elected Representatives

Use the Zip code tool to write to your representatives:
Senators, President and Congressman

 

 

<== See suggestion item on the left and tips.

Advocate Perspectives

 

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 Old and New

 

Tools and Resources for advocates:

 

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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

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An Advocate's Perspective (compiled)  PAL

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

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

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

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Famous People with Lymphoma
helping to raise awareness

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

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Lymphoma Statistics 
when you need facts to make the case

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National Biospecimen Network

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Opportunities and Challenges
in FDA Evaluations of New Drugs
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Patient Perspectives 

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Patient Perspectives
an archive of issues and commentary  

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

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

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Institute of Medicine report ‘Quality Chasm’ PDF

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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. 
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