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Lymphomation.org > Advocacy

Last update: 05/04/2008

"It is sometimes supposed that the silent witness is, through silence, an
approving party to what he observes." ~ Rae Langton
Advocacy Action Center
make a difference:
NEW:  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
Call the 
National Bone Marrow Donor program at 
800 MARROW2 
 
and become a 
registered donor.

Call now!
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

 

Advocacy Tools

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

Health issues on Congress.org 

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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

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

Advocacy Programs (CARRA, FDA Patient consultants programs, NCI Director's Liaison, IRB, etc.)

Clinical Trial Design and Participation  Consulting with Patients, the FDA, Drug Sponsors, the NCI, and community physicians. Establishing credibility through hard work and financial independence.
 

Overcoming obstacles to participation in clinical trials  Patient Perspectives
 

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

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’ PDFPDF-Help

"the Quality Chasm report has attracted much less public attention than "To Err Is Human" did, but for the serious student of health care quality and the serious leader of needed change, it signals the possible dawning of a new and persistent sense that the U.S. health care system’s performance in many dimensions, not just safety, is unacceptably far from what it should be."

What is advocacy?
  wpas-rights.org

Identifying Your Biases

All people develop attitudes, preferences and biases.  However, in order to be an effective advocate, you must be able to recognize your own attitudes, preferences, and biases.  If you don't your attitudes are likely to interfere with your judgment. You could take positions which reflect your biases, rather than the choices of the people for whom you advocate.  You may interpret the actions of others cynically, or naively, and thereby lose your ability to work effectively for the interests of others.

 
Disclaimer:  The information presented 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.