Submitted by:
Christine Murphy
Government Relations Director
International Myeloma Foundation
Phone: 703-738-1498
E-mail: cmurphy@myeloma.org
Testimony of the International Myeloma Foundation
Regarding Fiscal Year 2011 Appropriations for
Myeloma Cancer Programs
April 12, 2010
The International Myeloma Foundation (IMF) appreciates the opportunity to submit
written comments for the record regarding fiscal year (FY) 2011 funding for myeloma
cancer programs. The IMF is the oldest and largest myeloma foundation dedicated to
improving the quality of life of myeloma patients while working toward prevention and a
cure
To ensure that myeloma patients have access to the comprehensive, quality care they
need and deserve, the IMF advocates on-going and significant federal funding for
myeloma research and its application. The IMF stands ready to work with policymakers
to advance policies and programs that work toward prevention and a cure for myeloma
and for all other forms of cancer.
Myeloma Background
Myeloma is a cancer in the bone marrow affecting production of red cells, white cells,
and stem cells. It is also called "multiple myeloma" because multiple areas of bone
marrow may be involved. Myeloma is the second most common blood cancer after
lymphomas and its prevalence appears to be is increasing significantly. At any one time
there are over 100,000 myeloma patients undergoing treatment for their disease in the
U.S. In 2009, 20,580 Americans were diagnosed with myeloma and 10,580 lost their
battle with this disease.
Although the incidence of many cancers is decreasing, myeloma cases are increasing
in incidence. Once almost exclusively a disease of the elderly, myeloma is now being
found in increasing numbers in people under the age of 65, and it is not uncommon for
patients to be diagnosed in their 30s. IMF-funded research suggests that much of this
increase is being caused by environmental toxins. To give just one example supporting
this hypothesis, relatively recent published reports in the peer-reviewed literature have
identified a disproportionate incidence of myeloma among clean-up and rescue workers
at the 9/11 World Trade Center site.
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In recent years significant gains have been made, extending myeloma patients' lives
and improving their quality of life. Furthermore, progress begun in myeloma is already
helping patients with other blood cancers and even solid tumors. Now it's important to
maintain that momentum.
There is no cure for myeloma
Remissions are not permanent
Additional treatment options are essential
At the same time, even while they live with the disease, myeloma patients can suffer
debilitating fractures and other bone disorders, severe side effects of certain treatments,
and other problems that profoundly affect their quality of life, and significantly impact the
cost of their health care.
Sustain and Seize Cancer Research Opportunities
Myeloma research is producing extraordinary breakthroughs leading to new therapies
that translate into longer survival and improved quality of life for myeloma patients and
potentially those with other forms of cancer as well. Myeloma was once considered a
death sentence with limited options for treatment, but today myeloma is an example of
the progress that can be made and the work that still lies ahead in the war on cancer.
Many myeloma patients are living proof of what innovative drug development and
clinical research can achieve sequential remissions, long-term survival, and good
quality of life.
Our nation has benefited immensely from past federal investment in
biomedical research at the National Institutes of Health (NIH) and the IMF advocates
$33.349 billion for NIH in FY 2011.
A study in the Journal of Clinical Oncology projects that the number of new cancer
cases diagnosed each year will jump 45% in the next 20 years. In multiple myeloma an
even greater increase (57%) is projected, and we are already seeing increasing
diagnoses in patients under age 65 including patients in their 30s, in what was once a
rare disease of the elderly.
While a number of cancers have achieved 5-year survival rates of over 80% since
passage of the National Cancer Act of 1971, significant challenges still remain for other
cancers. In fact, more than half of the 562,340 cancer deaths in 2009 were caused
by just eight forms of cancer with 5-year survival rates of 45% or less of which
myeloma is one. Yet, myeloma and these other cancers have historically also received
the least amount of federal funding. As we have seen mortality rates of diseases such
as breast cancer, prostate cancer, AIDS, and childhood leukemia greatly reduced
through targeted, comprehensive, and well-funded programs that have led to earlier
detection and superior forms of treatment, so too must we shine a brighter light on
myeloma and the other seven deadly cancers to achieve this same goal for them. The
IMF urges Congress to allocate $5.957 billion to the National Cancer Institute (NCI) in
FY 2011 to continue our battle against myeloma.
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Boost Our Nation's Investment in Myeloma Prevention, Early Detection, and
Awareness
As the nation's leading prevention agency, the Centers for Disease Control and
Prevention (CDC) plays an important role in translating and delivering at the community
level what is learned from research. Therefore, the IMF advocates $6 million for the
Geraldine Ferraro Blood Cancer Program. Authorized under the Hematological Cancer
Research Investment and Education Act of 2002, this program was created to provide
public and patient education about blood cancers, including myeloma.
With grants from the Geraldine Ferraro Blood Cancer Program, the IMF has
successfully promoted awareness of myeloma, particularly in the African-American
community and other underserved communities.
IMF accomplishments include the
production and distribution of more than 4,500 copies of an informative video which
addresses the importance of myeloma awareness and education in the African-
American community to churches, community centers, inner-city hospitals, and Urban
League offices around the country, increased African-American attendance at IMF
Patient and Family Seminars (these seminars provide invaluable treatment information
to newly diagnosed myeloma patients), increased calls by African-American myeloma
patients, family members, and caregivers to the IMF myeloma hotline, and the
establishment of additional support groups in inner city locations in the United States to
assist underserved areas with myeloma education and awareness campaigns.
Furthermore, the more than 90 IMF-affiliated patient support groups in the U.S. also
made this effort their main goal during Myeloma Awareness Week in October 2005.
An allocation of $6 million in FY 2011 will allow this important program to continue to
provide patients including those populations at highest risk of developing myeloma
with educational, disease management and survivorship resources to enhance
treatment and prognosis.
Conclusion
The IMF stands ready to work with policymakers to advance policies and support
programs that work toward prevention and a cure for myeloma.
Thank you for this
opportunity to discuss the FY 2011 funding levels necessary to ensure that our nation
continues to make gains in the fight against myeloma.
IMF Contact Information:
Arin Assero
Christine Murphy
Director of Communications and Public Policy
Government Relations Director
International Myeloma Foundation
International Myeloma Foundation
12650 Riverside Dr. Suite 206
6534 Marlo Drive
North Hollywood, California 91607
Falls Church, VA 22042
Phone: 818-487-7455
Phone: 703-738-1498
Fax: 818-487-7454
Fax: 703-349-5879
aassero@myeloma.org
cmurphy@myeloma.org
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