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Patients Against Lymphoma


Advocacy > Combining Forces

Last update: 10/17/2012

Rationale for a United Approach | The Blood Cancer Coalition | Advocacy Groups

OFF: Rationale for a United Approach

Oneness: We must work to unite all cancer groups so that we may become a powerful political force - so we may become effective!  - not just for ourselves, but for those to come. The recent reversal on the NIH budget cuts is a demonstration of the power we have when we work together. Considering current stresses in 2003 on our economy, it was a remarkable victory! The NCI estimated that 8.7 million Americans were alive with cancer in 1997. That's a lot of voting power.
Fairness: Ensure that NIH resources are allocated fairly in proportion to burden. Period. 
It's wasteful to be in competition for larger pieces of general research allocations; and we believe that our representatives are uncomfortable when asked to support funding of one group over another. Importantly, this competition compromises the power we have when united.
Blood Cancer Groups
Focus: The Blood Cancer groups should then ensure that NIH resources are focused and optimized to discover, validate, and clinically test targeted therapeutics for NHL and other blood cancers as directed in the initiative proposed by the panel of PRG experts: 
A New PRG Initiative The Cancer Translational Research Allied Consortium (C-TRAC)

"We propose a new initiative that will bring together experts across multiple disciplines and institutions to participate, within a formalized infrastructure, in the rapid discovery and development of cancer therapies. This initiative will encompass the whole spectrum of drug discovery and development: identifying, validating, and credentialing targets; discovery and preclinical testing of agents directed against these targets; and scale-up and testing of promising agents in clinical trials. The ultimate goal of the C-TRAC will be to shorten drug development time from 5-10 years to two years through a novel alliance among academia, industry, government, and patients."

The Blood Cancer Coalition

The Blood cancer coalition was a huge success in 2002.  Our representatives are now much more sensitive to the burden we face, and they are also aware of the opportunities that desperately need funding.

OVERALL STATE OF THE SCIENCE - From the Report of the Leukemia, Lymphoma, and Myeloma Progress Review Group May 2001 full text

"Despite advances in diagnosis and treatment and improvements in patient survival, the hematologic cancers continue to have a significant impact on the lives of Americans. 

Right now, almost 700,000 Americans are living with leukemia, lymphoma, or myeloma (LLM), and an estimated 100,000 new cases occur each year. Although mortality has declined and 5-year survival rates have increased among adults and children with certain forms of these diseases, an estimated 60,000 Americans will die of them in 2001

For all forms of leukemia, the five-year survival rate is only 46%, for non-Hodgkin's lymphoma it is 54.2%, and for multiple myeloma it is only 28%. Despite the significant decline in the death rate for children with leukemia, this disease still causes more deaths in children in the U.S. than any other disease. Furthermore, the death rates for non-Hodgkin's lymphoma and multiple myeloma are increasing at a time when death rates for other cancers are dropping. 

Since the 1970's, incidence rates for non-Hodgkin's lymphoma have increased dramatically, making it one of the fastest rising cancers in the United States. The hematologic cancers strike individuals of all ages, from children to the elderly; men and women; and all races."

"Not only politicians, regulators, scientists, doctors and pharmaceutical  officers get cancer, but their parents, siblings children, grandchildren and  best friends - so we have an interested majority in any group you can think of - and we have to work the system by speaking up, being active and letting  them know that we care and that we expect them to do their best to deal with  this devastating plague in our society.  

Join us next year in D.C."  - Leonard R.


Advocate for Translational Research

Because of recent advances in the understanding of lymphoma, we have good reason to be optimistic about the future. However, there remains an urgent need to expedite the development and approval of new agents with novel mechanisms for treating indolent lymphomas: See Each Subsequent Therapy Results in Diminishing Response Rate and Duration of Response in Low Grade or Transformed Low Grade Non-Hodgkin's Lymphoma. - ASCO 2001 Abstract 1165

Many believe that one key to making progress in treating indolent lymphomas is to conduct translational research. This means do the work of translating what is known about pro-cancer mechanisms that drive and sustain malignant lymphoma cells into drugs that target or undo these mechanisms, as Gleevec has demonstrated recently. C-TRAC is a revolutionary proposal made by the NCI that is poised to accomplish this goal. It stands for Cancer Translational Research Allied Consortium. We believe it's essential that we tell our representatives to direct the NCI to implement this plan.  


Advocacy & Awareness Groups

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