Advocacy > Advocacy Perspectives

Patient Perspectives - commentary, proposals, and letters

Last update: 04/09/2010

TOPICS
Guidance for Patients and Caregivers | Urgency & Unity | 
Guidance for the NCI, the Industry, and the FDA | 
Research Funding and Insurance | CT scans

See also Perspectives

"The number one roadblock to our progress, 
as defined at the think tank Dialogues on Cancer (2002), 
is the lack of availability of high quality, highly characterized human specimens for translational research."

Here we provide patient perspectives on a variety of issues, and invite you to E-mail your comments, suggestions, and thoughts.     

Current:

• Regarding FDA transparency PDF

• Letter to CMS on Radioimmunotherapy reimbursement policy  2009-CMS-letter.PDF 

• Perspectives on Drug Reviews, Vaccine misinformation, Level of Evidence PAL

• Open Letter to SEER:  Regarding capturing statistics for lymphoma subtypes PAL seerltr.pdf 
  
  The SEER website has improved, but the utility of the statistics for non-Hodgkin's lymphomas continue to suffer because subtypes of the disease are not yet provided.
  
  UPDATE FROM SEER:

  • Detailed Statistics for NHL http://bit.ly/SEER-NHL

  • Detailed Statistics for Hodgkins http://bit.ly/SEER-Hodkgins
    

• Biobank Best Practices:  Patient Perspectives on the issue of transfer of  tissue for clinical use – particularly for use in translational clinical research - PDF 
  
  "we may not have fully considered that requests for transfer of tissue for clinical use could many times be in harmony with the ultimate objective of achieving “personalized medicine,” and the oft-stated principle of  “partnering with patients”  – particularly when used to determine eligibility for clinical trials."

GUIDANCE: For Patients and Caregivers:

• Guidance: Strategies for Finding and Evaluating Medical Information
   
  As presented at Gilda's Club Delaware Valley, April 2006

• Guidance: How to evaluate medical claims and data
   
  Is this strong or weak information? Who is saying it?  It is reproducible?  Is it free of bias? ...

• What NOT To Say To A Cancer Survivor  Kathy on WebMagic
  
  Whether you are a newly diagnosed survivor or someone who loves him or her, cancer rocks your world. We survivors have our own issues to face, but those of you who care for us can help by learning what not to say. We know you mean well, but please avoid the following platitudes ....

• 10 Rules for Redesign of Our Health Care System - IOM ~ Crossing the Quality Chasm

URGENCY & UNITY

• PAL's Mission

• Commentary on AACR Molecular  Targets and Cancer Therapeutics 2005

• Why we need the National Biospecimen Network

• Recipe for Progress Against Lymphoma

• OFF - Oneness, Fairness, Focus Rationale for a united effort

• Our Fight is Similar - fighting cancer and terrorism - Patient perspectives
  
   

GUIDANCE: For the NCI, the Industry, and the FDA

To help accelerate the development and evaluation of investigational therapies for lymphomas.

• Patient attitudes towards trials: Report from our Lymphoma Patient Survey regarding 
  interest and participation in clinical trials  PDF

• Perspective: Adaptive Design Conference, July 2006, Washington DC 
  
  Harmonizing Research Goals with Meeting the Clinical Needs of the Participants 
  (slides with narrative) PDF

• Perspective: Harmonizing Research Goals with Meeting the Clinical Needs 
  of the Participants - Apr 2006 - PDF 
  
  Presentation at Favrille Investigators Conference

• Study Proposal:  Combine molecular profiling research with evaluating first-line use of patient-specific idiotype cancer vaccines - studyprop.pdf
  
  Update: No longer feasible given the disappointing outcomes from vaccine phase III trials.

• Perspective:  Advocating for Coordinated Immunotherapy Research 
  
  Eliminating Suffering and Death Due to Cancer by 2015: The Future of Cancer Research - 
  Let's not forget Immunotherapy! - A letter to Dr. Von Eschenbach

• "The patient is waiting" - patient perspectives on  aspects of toxicity and the need for innovation - PAL

  • an appeal for NBN in a brochure format PDF

• Question:  Radiofrequency Ablation for lymphoma?  PAL

• Clinical trial design and participation - We consult with Patients, the FDA, Drug Sponsors, the NCI, investigators, and community physicians.  Our goal is to increase participation in order to accelerate progress against the disease.  How else?

• Advocacy?  Radiofrequency Ablation for lymphoma? PAL

• What Makes A Study Desirable - Known Obstacles to Accrual - 
  Patient Perspectives on Clinical Trial Design

  • TRIAL DESIGN: Patients Against Lymphoma Presentation 
    Cancer Vaccine Conference, Boston - April 2003
    
    Harmonizing Research and Treatment Goals Web version 
    Color PDF or B&W PDF PDF versions  PDF-Help

• WHEN? Expedite Gene Profiling - Routinely snap freeze lymphoid tissue at biopsy

• WHEN? Rationale for the National Biospecimen Network NBN
  
  There's an urgent need for new approaches and tools to accelerate clinical research, such as the National Biospecimen Network.  One reason that even well-controlled studies fail to provide definitive answers, it seems, is they are often unable to account for underlying biological differences in the tumors and patients.

• Perspective: The Need for Content and Structure Standards for Published abstracts

• Perspective: Changing the Treatment Paradigm for indolent NHL: treat early with novel agents?

• Perspective Patient Access to Emerging Therapies  for Incurable Cancers 

• Perspective: Bexxar Approval Petition Letter to the FDA 
  
  Update: The ODAC has since recommended the approval of Bexxar and FDA has approved it.

• Perspective:  What can we do to responsibly accelerate drug evaluations

• Perspective: Accelerated Approval for Low Toxic Therapies - Draft proposal to investigators & FDA 

• Perspective: The Progress Review Group plan -  The PRG plan and why it needs to be carried out  

• Perspective: Letter to Mark McClellan, MD, PhD Commissioner, Food and Drug Administration 
  
  Commentary on Abigail Petition - Compassionate Use Proposal

• Perspectives:  Letter to CMS on proposed rate cuts for radioimmunotherapies Also:
  Patient-driven | What's at Stake | We're not asking for charity |
  Your Help is Needed | Will Washington Sentence Lymphoma Patients to Death? 

FUNDING AND INSURANCE COVERAGE

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

CT SCANS

• Question: Are patients with indolent cancers receiving too many CT scans?  Background information

• The long-term risks associated with (repeated) CTs Appeals to the use of non-radioactive scans - Antonio M.C. Reis, M.D. and Maria de Lurdes F.V. Queimado, M.D., Ph.D.

• A User’s Manual For The IOM’s ‘Quality Chasm’ Report - IOM
   
  "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."