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Fall 1999 Volume 3, Issue 6:
Myeloma Patient Advocacy
09.01.99
President's Note:

The way to finding a cure is through research, and the most prolific cancer research entity in the world is the National Cancer Institute (NCI). The IMF has engaged in a public advocacy program in support of funding for multiple myeloma (MM) research at the NCI and the National Institutes of Health (NIH). Together with IMFers throughout the nation, the IMF has increased awareness about MM at the NCI and in Congress. Most of the effort of the advocacy program has focused on educating members of Congress about the need to provide legislative authority for NCI to fund MM research. This is done through what is called “report language” – jargon for directives that express the wishes of Congress as money is appropriated to particular agencies. Directive report language to the NCI and other medical research conducted at the NIH differs from other types of legislation (i.e. highway projects). No funds are directly earmarked for research programs. Instead, when Congress provides funding to an agency engaging in medical research, it gives it in lump sums and through directing language that “urges”, “encourages”, or “recommends” research agencies to address particular issues. That language gives Congress a yardstick by which to measure the performance of the agency prior to the next year's appropriations cycle. In order to explain the issues facing MM patients, the IMF submitted testimony to Congress on April 22, 1999. The following is an excerpted transcript.

Multiple Myeloma: An Incurable Cancer

MM is an incurable cancer of the plasma cells of the bone marrow affecting approximately 50,000 Americans. Research has found that MM is more prevalent in Western industrialized countries. Higher rates of occurrence have been observed in coastal, industrial zones, agricultural belts, and in areas with high concentrations of population. In other words, as the world becomes more industrialized, it is not illogical to assume that rates of MM incidence will rise accordingly.

The NCI and Myeloma Research

By its own admission, NCI conducts a “modest program of research related to MM.” Using a conservative approach, NCI estimated that it awarded $11.7 million toward MM research in FY 1999. That figure included $5.4 million for 22 new and non-competing grants with at least 25% of the research effort directed toward MM. In addition, NCI stated only 8 of 24 approved, competing grants with at least 25% of the effort directed toward MM were funded. These figures need to be put into perspective. MM diagnoses represent 1% of the incidences of all cancers in the U.S. and 2% of the mortality statistics, yet, as seen above, these percentages are not represented equitably in terms of funding priorities. The FY 2000 budget for NCI will approach $3 billion. This is not intended to be an indictment; it is rather a call to action.

In order to achieve significant progress in MM research for the benefit of today's patients, substantial increases in funding and other incentives are needed. Patients are confronted with the reality of trying to outlive the 3-to-5 year averages quoted at diagnosis.

The IMF supports granting NCI resources to maintain better data about research relevant to MM and to ensure that information is communicated throughout the medical and patient communities. The IMF is also very encouraged by the present NCI leadership and the forthright approach taken by the Director in soliciting the views of the MM community. That circumstance alone gives us hope.

MM Patients: The Purpose of Research

The good news of cancer research is the recent, sustained reductions in overall cancer incidence and mortality rates. This is are due in large measure to the leadership taken by NCI. Unfortunately, MM patients cannot share in that good news yet. Incidence and mortality rates continue to rise. As NCI has stated, “Progress in understanding myeloma has been hampered by a lack of a suitable model for the disease.” The IMF believes that NCI must take the lead in determining answers to this basic question.

Certain anecdotal trends among MM patients seem to recur with increased frequency. For example, since the mean age for all MM patients is 60, more and more patients are diagnosed just at the time in their lives when they expect to reap the rewards of their life's work. These are people who have lived and played by the rules, paid their taxes, raised their children to become responsible adults, contributed to their churches and communities, and planned responsibly for their retirements. They are persons who have made goals and fulfilled plans throughout their lives. The feelings of helplessness they encounter with their diagnosis runs contrary to their normal assertiveness in attacking problems.

Despite the fact that no causes for MM are known, the suspected linkages between environmental exposures cause patients to live in uncertainties that something related to their careers or choice of home may have had something to do with their illness. They wonder if by serving their country in foreign wars they may have exposed themselves to the things that cause MM. They wonder if that good job at the refinery may have raised their short-term income at the cost of their long-term health. They wonder if those afternoons spent planting the crops may have sown the seeds of an incurable disease. They wonder, with new research suggesting a possible linkage between MM and viruses, if they could possibly infect a loved one. They search in vain for definitive answers because the current state of research is too inconclusive to answer their questions.

Recommendations

The IMF rejoices in the recent advances in cancer research. But our patients and family members become more impatient for results the more they hear about advances in other fields. They also know the uncertainties about the disease point to real public policy concerns that will have to be addressed. It cannot be avoided. And responding to those voices, the message of the IMF is clear: We believe the time has come to direct and increase funding for MM research at the federal level. The IMF and its membership support inclusion of funding and legislative report language to grant NCI resources to:

  1. review its MM research portfolio;
  2. accelerate support of promising research;
  3. encourage new investigators to enter the field;
  4. convene an NIH-sponsored Consensus Conference to determine the state of MM research and promising opportunities, and to make recommendations to NCI for further research;
  5. integrate epidemiological and occupational health research and data gathering activities relevant to MM to learn more about the molecular pathogenesis of the disease and its suspected agents;
  6. provide funding for existing projects approved but not funded by NCI that had at least 25% of the effort directed toward MM.

June Brazil Joins CAPCAM

The National Institutes of Health (NIH) has chartered a federal Cancer Advisory Panel on Complementary and Alternative Medicine (CAPCAM). The panel will serve in an advisory capacity to the Director of the National Center for Complementary and Alternative Medicine (NCCAM) in the assessment of present and future CAM clinical trials and medical interventions, determine potential research opportunities, and develop a mechanism for communicating research results from these studies to key constituencies. CAPCAM is a joint initiative of NCCAM and the National Cancer Institute (NCI) and is governed by the provisions of the Federal Advisory Committee Act.

“The formulation of this panel of experts represents a vital step towards rigorously evaluating the efficacy and safety of various complementary and alternative cancer therapies that demonstrate the potential for helping to reduce the burden of this disease,” said NCAAM Acting Director Dr. William Harlan.

Dr. Earnest L. Wynder, Chairman of CAPCAM, is President and Medical Director of the American Health Foundation and Clinical Professor of Community and Preventive Medicine at New York Medical College. An additional 14 members represent a broad range of expertise in the fields of complementary and alternative or conventional medicine, clinical trials, biostatistics, oncology, pathology, radiology, and bioethics, and who share a common interest in advancing research in this field. IMFer June Brazil, a Clinical Professional Associate of Acupuncture and Oriental Medicine at Mercy College in New York, has joined this advisory panel.

To obtain an agenda for CAPCAM meetings, please call (301) 594-2013 or access this information from NCCAM’s website at www.nccam.nih.gov.

Professor Durie Joins Review Board For NCI Initiative

The Director of the National Cancer Institute (NCI) has challenged the scientific community to harness the power of comprehensive molecular analysis technologies to make the classification of tumors more informative. This challenge is intended to lay the groundwork for changing the basis of tumor classification from morphological to molecular characteristics. The NCI Director has invited investigators to form multi-disciplinary research groups and to submit applications proposing the exploitation of one or a related set of comprehensive molecular analysis technologies for the analysis of tumor specimens.

Applicants may propose to develop comprehensive molecular profiles using DNA, RNA or protein-based technologies. A further goal of this initiative is the development and implementation of a plan for timely release of the extensive data sets expected to result from these projects. Access to these information rich data sets will benefit the entire cancer research community and facilitate rapid progress toward achieving the goals of the NCI. Prof. Brian G.M. Durie, IMF Scientific Advisor and Chairman of the Board of Directors, is participating in this NCI initiative as a member of the review board.

Michael Katz Appointment

IMF Board of Directors member Michael Katz has been appointed to the Adisory Committee to the Director (ACD) of the National Cancer Institute (NCI). The ACD is responsible for coordinating NCI planning and advisory activities and is chaired by NCI Director Dr. Richard Klausner and includes the chairs and selected members of the NCI Board of Scientific Counselors, the National Cancer Advisory Board, Board of Scientific Advisors, and the Director’s Consumer Liaison Group, as well as key NCI staff.

Steve LeBlanc Appointment

IMFer Steve LeBlanc has been appointed as a patient representative to the Eastern Cooperative Oncology Group (ECOG) Data Monitoring Committee (DMC). The DMC oversees the clinical trials conducted by ECOG.


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