Patients Against Lymphoma (PAL)

Last updated: 01/07/2012

TOPICS
Contact Us | Board, Advisors and Staff | Detailed Mission
Visitor Comments | Accomplishments | Advocacy Perspectives

NEW: New Year Musings on Progress Against Lymphoma,
2011 Highlights, Looking ahead - our Wish list 

We provide support, which many times includes the need for
information on a broad range of topics. 

Our main product is evidence-based information, provided without charge and without requests for any identifying information.

Please note that we avoid recommending treatments or that individuals participate in specific clinical trials.  We remind that we are NOT doctors and that even trained physicians would require first-hand clinical information before advising any person about a treatment for a life-threatening medical condition.

We advocate for clinical research that is patient-centered - focused on answering critical research questions while having the potential to also meet the clinical needs of the study participants:

Achieving the dual requirements of being
Good science AND Good medicine!

... With this need in mind, we provide information and tools to
advance the routine and informed consideration of clinical trials.

Because our focus is on providing information, we have chosen to be independent of health-industry funding in order to avoid even the appearance that our content is influenced by a financial conflict of interest.

We also advocate also for a health care system that provides all patients with access to the full range of effective treatments, standard and investigational.

About Us PDF

Remembering our Founding Members
Page Irby	Founding  board member
Antonio Reis	Founding advisor
Charles Brennan	Founding board member

More about PAL

We were founded in 2002 by patients and caregivers directly affected by lymphomas, a kind of blood cancer that has risen 4% annually between 1970 and 1990.

We actively engage the research community - providing patient perspectives on the direction of clinical research and the design of clinical trials.  Our president is a participating advocate in the Alliance Cooperative Group, and has served in a number of advisory meetings at FDA.

Helping patients to think like scientists; 
and scientists like patients.

Our rule is to provide hope without hype.  We try to avoid  overstating the findings of trials.  We want to help patients and caregivers to more critically evaluate the strengths and weaknesses of medical publications, media reports, and in particular, testimonials.

We continuously update our web site in response to
  visitor questions and patient needs, guided 
by our scientific advisors and the published medical literature.

Day or night, and without leaving home, 
patients can find answers 
in total privacy  and without concern 
about asking a “dumb” question.

Importantly, we maintain our neutrality by accepting only public support.  We do not base our information on the biases and hopes of private donors either. 

We have chosen this path in order to provide unbiased perspectives on clinical research, drug approval, and access to the standard of care ... ensuring that our advocacy efforts are driven only by what is in the best interests of patients.

Because there's an urgent need for safer and more effective therapies, we provide tools to help find trials based on the patients diagnosis and treatment status, but also by type of agent.

   In addition to the content we develop, we link visitors to reputable sources of information on a comprehensive list of topics, specific to lymphoma.

Our Mission 
(detailed)

Focusing on
what we can
do now to help win
the battle
against lymphoma.

  Karl Schwartz,
president 
and co-founder

CV

 Providing timely access to:

Draft

	Clinical trials for lymphoma based on ready-to-use queries of ClinicalTrials.gov by:   treatment type  lymphoma subtype and treatment setting phase, first line, stage, other ....  state and country Clinical trials of interest, by setting
	Background information about lymphomas, including:   About lymphomas – simplified and detailed explanations. About transformation, diagnosis and pathology, and prognostic indicators About the lymphatic system; background articles on biology and immunity. Resource pages on subtypes of lymphoma – includes subtype-specific queries of PubMed, ASCO, and ClinicalTrials.gov
	Background information on incidence rates of lymphoma,  and known risk factors.
	Background information about standard and investigational treatments, and complementary practices.
	Research news and notices of special events, with commentary.
	Resources to help patients locate medical experts, cancer centers, and second opinions on pathology evaluations.
	Support resources on a variety of topics:   communicating with doctors - becoming an active and informed partner in our care careers and cancer  drug payments, insurance and financial support immunization guides palliative care ports support groups . . .

 Advancing and advocating for:
 

	Clinical testing of biotherapies (such as immunotherapy) on patients with indolent lymphomas who do not require therapy in order to take advantage of:
	Better immune competence
	Less tumor burden
	Less prior exposure to toxic treatments
	Potential to improve quality of life
	Potential to learn without precluding use of standard treatments

	Gene profiling technology in order to identify clinical subtypes of lymphoma to help rationally select treatments and more rapidly identify molecular drug targets.
	Optimal care for all cancer patients as determined by up-to-date evidence-based clinical data, unencumbered by insurance or regulatory policies.
	Shared decision making.
	Encouraging translational research at the NCI
	Transparency in the drug evaluation system.

Leading in efforts to:
 

	Educate community physicians and patients about the importance of participating in clinical trials.
	Educate patients and caregivers about how to recognize possible bias and conflict of interest in scientific data, and medical claims; and how to distinguish between weak and strong medical information.
	Encourage the cooperation of all lymphoma and cancer organizations so that we may better achieve our common goals and do effective advocacy work.
	Improve access to the compassionate use of appropriate investigational therapies for patients in need who are not eligible to participate in clinical trials.
	Increase public awareness of lymphoma, including risk factors, symptoms, the burden of the disease, and research opportunities.
	Provide online peer-to-peer support groups that provide opportunity for patients and caregivers to encourage each other and exchange information.
	Provide online research tools and educational materials for all individuals who support lymphoma patients.
	Provide informed patient perspectives on clinical trial design and FDA decisions, and to vigorously represent the patient's perspective in matters of concern.
	Provide well-researched answers to every visitor question in a timely manner.

We sincerely hope that you will participate in the process and make this site your own by sending comments or suggestions, asking questions or by making a tax-deductible donation. 

Accomplishments

Support

Advocacy

Return to top

Support | Advocacy

End of Year 2008 Report PDF

2008 Page Irby Patient Navigator Award Recipients 

Highlights:

We estimate our value to the community from direct feedback, but also by reviewing website and support forum statistics.

1. Visitor comments

2. Expanding our reach with new media:
    
   
   
   Thanks to extraordinary work by Betsy de Parry 
   and Liz Hart McMillan

3. Teleconference presentation for Nurses and Social workers:

   Sponsored by Lance Armstrong Foundation,
   Leukemia and Lymphoma Society, July 2009

   Finding & Evaluating Online Medical & Support Information
   Slides: http://www.lymphomation.org/find-eval-final.PDF 

4. Our study published:
   
   ASCO 2009:  Interest, attitudes, and participation in clinical trials among lymphoma patients with online access.  abstract

5. Participant, FDA Advisory Committee (ODAC)

   Romidepsin for relapsed advanced cutaneous t-cell lymphoma (CTCL)

    Pralatrexate for aggressive relapsed Peripheral T-Cell Lymphoma (PTCL)

   Commentary

6. Letter to FDA on Transparency initiative PDF

7. Moderated support forums:  
   
   7 groups, 2,657 subscribers (2/09)
   
   

8. Alexa.com ranking:
   
   We are ranked 321,000 among all websites in the world
   and 73,000 among all sites in the US  (8/10)

9. AWStats reporting:

    Yahoogroups editor's pick in 2005: NHL-info:

Research Advocacy Highlights:

Advocacy Objectives and Recent Accomplishments:

–        To identify the obstacles oncologists have to referring patients to clinical trials. 

o        ACTIVE: Oncologist Survey: http://www.lymphomation.org/docsurvey.pdf

–        Proposing enhancements to the Clinicaltrials.gov registry, to enable locating clinical trials by the clinical circumstances of  patients.

o        ACTIVE: Letter to NIH: http://www.lymphomation.org/settingsrch.pdf

–        To identify patient attitudes about Clinical Trials and obstacles to enrollment, and to share our findings with the research community.

o        COMPLETED: Survey for patients: http://www.lymphomation.org/ps1.htm

o        COMPLETED: Lymphoma and Myeloma Conference, Poster:  http://www.lymphomation.org/IAP.pdf | http://www.lymphomation.org/IAP-narr.pdf

o        ACTIVE: ASCO abstract submission: http://www.lymphomation.org/iap2009.pdf

–        Advocating for cooperative, standardized biospecimen resources
 supporting correlative and translational clinical research.

(Research that can more efficiently translate insights about the biology of tumors into better therapies for patients, and tailoring such therapies to individual patients.)

o        ACTIVE:  Making the case for a biospecimen-based resource:
http://www.lymphomation.org/NBN.htm

o        COMPLETED: Letter to NIH on Custodianship and Ownership Issues in Biospecimen Research Symposium-Workshop http://www.lymphomation.org/pt_use.pdf 

–        Consulting on study design to help investigators and drug sponsors identify ethical issues and aspects of a study that may be desirable or undesirable to patients considering trials. 

o        ACTIVE: Harmonizing Research Goals with Meeting Clinical Needs Patient Perspectives on Trial Design:
http://www.lymphomation.org/adaptive_l.pdf  

–        Recommending enhancements to the SEER registry. 

o        ACTIVE: Letter to SEER regarding subtype statistics: http://www.lymphomation.org/seerltr.pdf

Other:

	Participant in advocacy efforts to modify the clinical trial design of cancer vaccines.  2001 See for details
	Participant, Progress Review Group for Blood Cancers, NCI, 2001
	Participant, FDA ODAC Patient Consultant program
	Presentation to Patient Representatives - Slides: close-call-final.pdf
	Presentation to scientific and regulatory community:  Patient's Perspective: the Demand for Innovation vs. Safety  Leigh Thompson Renaissance Conference, Charleston, SC, 2005
	Participant in the "Chronic GvHD: The Next Frontier in Transplantation Medicine", NCI 2005 Providing patient perspectives on clinical trial design.
	Participant in the SEER workshop, NCI, 2005. Providing perspectives on the need to provide statistical information on the subtypes of lymphoma - that there is a significant gap in the information provided as of 2005. See our follow up letter for details
	Participant in the NCI National Biospecimen Network Workshop, NCI, 2005 See for details
	Exhibitor: AACR Molecular Targets and Cancer Therapeutics 2005
	Dec 2005: Speaker National Press Club Providing patient perspectives on The Cancer Genome Atlas (TCGA) -  “a large-scale collaborative effort by the National Cancer Institute (NCI) and the National Human Genome Research Institute (NHGRI) to systematically characterize the genetic changes that occur in cancer.”  See for details:  NCI | PAL
	April 2006: Presentation at Favrille Investigators Conference: Harmonizing Research Goals with Meeting the Clinical Needs of the Participants  PDF
	April 2006: Presentation: Strategies for Finding and Evaluating  Medical Information  PAL pdf   Gilda's Club Delaware Valley
	July 2006:  Presentation: Harmonizing Research Goals with the Clinical Needs of Patients   Event:  Trial Design Innovation Accelerating Safer Drug Development with Adaptive Trials, Washington DC,   Bio | Slides with Narrative
	February 2007: Report on survey: Interest, attitudes, and participation in clinical trials among patients with lymphomas http://www.lymphomation.org/ptsurvey1.pdf
	Dec 2007: Grassroots effort pays off:  Advocacy initiative to restore full payments for Radioimmunotherapy by CMS, spearheaded by PAL, succeeds!   Medicare Act includes Legislative fix that  will save RIT!   ... then: House votes 417 to 3 to, Bush signs bill. House and Senate Pass Medicare Legislation to Freeze 2008 Reimbursement for Therapeutic Radiopharmaceuticals at 2007 Levels

Our Letters and Blogs on this issue: 
Our letter to CMS on proposed rate cuts 
Patient-driven driven advocacy 
What's at Stake  
We're not asking for charity
Your Help is Needed 
Will Washington Sentence Lymphoma Patients to Death?

 

In Memory

In memory of Page Irby, dear friend, colleague, and founding member
and Charles Brennan, beloved director and financial advisor to  PAL 

March 11th, 2008: Page Irby died after 14 years of living with non-Hodgkin's lymphoma. We are deeply saddened today to learn of her passing. Page was valued friend, colleague, and founding member of PAL. Page was and will remain an inspiration to me in her approach to life. As you know, she was committed to helping others to navigate the medical system and was an articulate advocate for becoming an informed and proactive patient.

May 2, 2008: Charles Brennan, a member of our board since PAL's inception, passed away this morning. We met in 1997 when his wife, Penny, was receiving treatment for lymphoma, and we became fast and very close friends. He had recent surgery for an aneurysm which led to a stroke, followed by an infection. In addition to our friendship, Charles, a retired CPA with considerable corporate experience, provided invaluable guidance on how to administer the accounts of PAL. He leaves behind many close friends and fond memories.