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Advocacy > Commentary

Patient Perspectives - commentary, proposals, and letters

Last update: 04/25/2008

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

"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:

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.
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
Perspective: Commentary on AACR Molecular  Targets and Cancer Therapeutics 2005
Perspective: Why we need the National Biospecimen Network
Perspective: Recipe for Progress Against Lymphoma
Perspective: OFF - Oneness, Fairness, Focus Rationale for a united effort
Perspective: 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

Key benefits: Acquire tissue once for multiple and complementary purposes. Avoid ethical issue of acquiring tissue solely for basic research.  Quickly accrue patients for important clinical and basic research without precluding optimal benefit from standard treatment in future. 

Discussion: Patient interest is an important starting point for study design. Patients with untreated stable disease provide an important untapped opportunity to investigate immune therapies, while also increasing our understanding of the molecular biology of the disease – which can provide the context for understanding outcomes, and the variable clinical course of this incurable and common disease.
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
WHEN? The Need for SEER statistics on the SUBTYPES of lymphoma 

(updated & resubmitted May 2007)
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: Concerns About Randomized Vaccine Trials 
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: Are vaccine-induced immune responses valid endpoints to justify approval?
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.

 

Resources & Research News
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."
 
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.