Mesothelioma Empowerment

Our Mission is to eradicate mesothelioma as a life-ending disease.

Mr. Kevin O'Scannlain
Office of Senator Orrin G. Hatch
104 Hart Office Building
Washington, DC 20510

Date: April 8, 2003

Re: Creation of Mesothelioma Research and Treatment Program; "The Asbestos Claims Criteria and Compensation Act," S. 413

Dear Kevin:

Attached you will find (1) the proposed language for the creation of a Mesothelioma Research and Treatment Program (MRTP) and (2) a memorandum from Dr. Harvey Pass, the Chairman of MARF's Science Advisory Board, in which he fleshes out the proposed programs, their purpose, operation and minimum funding requirements.

Since about 32% of all mesothelioma veterans diagnosed in the U.S. today served in the Navy or worked in a Navy shipyard, we are suggesting that the MRPT be jointly administered by the NIH, DVA and DOD. These three agencies would fund up to ten mesothelioma centers of excellence (we refer to same in the text as "MIRES" but for obvious reasons we should probably change to another acronym, like "Translational Research Institutes for Mesothelioma" (TRIMs), in the amount of $2.5 million per center for each year from 2004 to 2008, after a rigorous peer review protocol. The three agencies would also appoint a Medical Advisory Board, consisting of experts in the field (such as those who serve on MARF), who can review grant applications to make sure they are in line with the stated Research Priorities (i.e., detection, prevention, treatment and cure of mesothelioma).

The Program would also include a Registry and Tissue Bank. To honor Admiral Elmo Zumwalt, who helped so many veterans afflicted with Agent Orange related cancers through the creation of a bone marrow registry, you might want to refer to the registry as the "Elmo Zumwalt Registry." Similarly, you might want to honor another prominent figure whose life was cut short by mesothelioma, Congressman Bruce Vento. We can refer to the Tissue Bank as the "Bruce Vento Tissue Bank," in recognition of his service as a public school teacher and his passion for science.

Regarding funding, we did not explore the option of funding the program as an exactment from the proposed compensation trust. This is certainly an attractive feature. Our focus was the substance of the program itself: the creation of research and treatment centers geographically, as well as a tissue bank and registry, and the operation of same, along with the guiding principles. Our best estimate of the cost is $27,000,000 each year for the next 5 years, for a total outlay of $135 million.

A key component is early detection and prevention. Although MARF has not weighed in on the merits of the proposed reforms to the asbestos litigation system, we would certainly want to offer hope to all unimpaired asbestos patients that (1) research is underway to provide for early detection of cancer and possible preventive measures and (2) should they ever become afflicted with asbestos cancer, a meaningful program will be in place that offers reasonable and accessible treatment options.

It has been a pleasure talking with you on the telephone and I look forward to meeting you in person soon.

Yours very truly,

Roger G. Worthington, Esq.
Founding Director
Christopher E. Hahn, Esq.
Executive Director
Harvey Pass, M.D.
Chairman
Science Advisory Board
Robert B. Cameron, M.D.
Director
Board of Directors

cc: Ms. Rebecca Seidel