Written Testimony of the
INTERNATIONAL MYELOMA FOUNDATION
regarding
NCI CANCER RESEARCH: TODAY'S PROGRESS; TOMORROW'S CHALLENGES
Subcommittee on Health
Energy and Commerce Committee
US House of Representatives
March 23, 2010
The International Myeloma Foundation (IMF) appreciates this opportunity to submit
testimony related to research on the most deadly forms of cancer at the National Cancer
Institute (NCI). 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.
Background on Myeloma
Myeloma is a cancer of plasma cells that develops in the bone marrow and affects the
production of red cells, white cells, and stem cells. It is also called "multiple myeloma"
because multiple areas of bone marrow and bone may be involved. Myeloma is the
second most common blood cancer after lymphomas, but it is also a relatively rare or
"orphan" disease as defined by the Orphan Drug Act.
Myeloma is an incurable form of cancer. In 2009, 20,580 Americans were diagnosed
with myeloma and 10,580 lost their battle with this disease. At any one time there are
over 100,000 myeloma patients undergoing treatment for their disease in the U.S. The
5-year survival for multiple myeloma patients diagnosed in 2009 was estimated at only
about 35% by the American Cancer Society.
Over the past 40 years the incidence of many cancers has decreased, but myeloma
cases are increasing in incidence. Once a disease of the elderly, it is now found in
increasing numbers in people under 65 and patients in their 30s are not uncommon.
IMF-funded research suggests that this increase is associated with environmental toxins;
as just one example, a disproportionate number of myeloma cases have been
diagnosed in clean-up and rescue workers at the 9/11 World Trade Center site.
Although important advances have been and continue to be made in the treatment of
myeloma since the IMF was founded in 1990, these treatments all come with significant
and problematic side effects that significantly impact quality of life. Even while they live
with the disease, myeloma patients can suffer debilitating fractures and other bone
12650 Riverside Drive Suite 206, North Hollywood, CA 91607
800-452-CURE (2873)
818-487-7455 telephone 818-487-7454 fax
www.myeloma.org
Written Testimony of the International Myeloma Foundation
regarding
NCI Cancer Research: Today's Progress; Tomorrow's Challenges
Subcommittee on Health
Energy and Commerce Committee
US House of Representatives
March 23, 2010
disorders, severe side effects of their treatment, and other problems that profoundly
affect their quality of life, and have major impact on the cost of their health care.
Deadly Cancer Research at the National Cancer Institute
The IMF joins with its partner members of the Deadly Cancers Group in bringing to the
attention of this Committee that, 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 types of cancers, particularly the most deadly forms of
cancer. More than half of the 562,340 cancer deaths in 2009 were caused by eight
forms of cancer with 5-year survival rates of 45% or less: pancreatic, liver, lung,
esophageal, stomach, brain, multiple myeloma, and ovarian. Yet, these eight
cancers have historically also received the least amount of federal funding. As indicated
earlier, the 5-year mortality rate for myeloma is still only about 35%.
The IMF is highly supportive of long-term initiatives of the NCI such as the Cancer
Genome Atlas and associated projects; however, these initiatives are highly unlikely to
have any impact whatsoever on the care or survival of people already diagnosed with
myeloma, or even those diagnosed with myeloma in the next 5 years, many of whom will
die long before such projects bear fruit. In addition to such long-term initiatives that will
benefit all those at risk for cancer in the long term, the NCI needs to emphasize the
critical importance of focused research monies that support "out-of-the-box" innovative
research into the causes and progression of myeloma and the other deadly cancers. It
is widely understood that research on one form of cancer may yield basic or applied
knowledge related to other cancers, and this has been particularly true for the
application of blood cancer research to other cancers. Treatments that were initially
developed for blood cancers are now used in treatment of solid tumors, and the basic
research on blood cancers fuels basic research advances in other cancers, as well.
The IMF is fully supportive of the proposals laid out by the Deadly Cancers Group for the
establishment of a "Targeted Cancers" program within NCI for cancers with 5-year
survival rates of less 50%. This initiative would require a comprehensive plan of the
research activities necessary to increase survival well above the 50% survival threshold;
be authorized at a level commensurate to these cancers' mortality and public health
impact; conduct research activities through its own grant making authority and through
leveraging the grant making authority of other NCI divisions and programs.
Environmental Risks Associated with Myeloma
Once considered a "rare disease of the elderly," myeloma is increasingly being
diagnosed in patients under 45 years old. Data from the IMF's Bank On A CureŽ
initiative has already identified several changes in DNA sequences called SNPs (single
12650 Riverside Drive Suite 206, North Hollywood, CA 91607
800-452-CURE (2873)
818-487-7455 telephone 818-487-7454 fax
www.myeloma.org
Written Testimony of the International Myeloma Foundation
regarding
NCI Cancer Research: Today's Progress; Tomorrow's Challenges
Subcommittee on Health
Energy and Commerce Committee
US House of Representatives
March 23, 2010
nucleotide polymorphisms) that are associated with the risk of bone disease in myeloma.
Further analysis has shown that many of these DNA changes may be involved with the
way the human body responds to certain environmental toxins, providing a possible link
between myeloma and the environment.
The findings may help explain a widely reported study published last year in the Journal
of Occupational and Environmental Medicine, that found more cases of myeloma among
younger responders to the 9/11 World Trade Center site than would normally be
expected. The findings are also supportive of a study published in 2009 that suggests a
link between exposure to certain pesticides among agricultural workers and a precursor
to multiple myeloma. Previous studies have also shown an increased risk for myeloma
among firefighters.
The federal government has already recognized its responsibility to military personnel
whose health may be endangered simply through their service to the country: the
Institute of Medicine conducts periodic evaluations of the health consequences of
environmental exposures and the Department of Veterans Affairs provides benefits to
those diagnosed with blood cancers caused by or associated with environmental toxins.
These toxins include Agent Orange for Vietnam veterans, ionizing radiation for atomic
veterans, and benzene for Gulf War veterans.
Grant Funding for Young Investigators
For the past 15 years, the IMF's research initiatives have been highly focused on funding
promising young researchers and clinical investigators from around the world in an effort
to improve outcomes for myeloma patients. Giving young researchers the belief that
there will be long-term opportunities for them to conduct scientific and clinical research
into myeloma is fundamental to the improvement of opportunities for myeloma
prevention, better treatments, and longer survival. But more needs to be done to provide
grant funding for young investigators and to stimulate careers in research into myeloma
and other forms of deadly cancer.
The IMF supports the development by the NCI of specialized training programs and
education programs for early career PhD and clinician scientists that protects their time
for research, to attract and retain a broader pool of investigators for myeloma and the
other deadly cancers.
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 research needs at the NCI to ensure that our nation continues to
12650 Riverside Drive Suite 206, North Hollywood, CA 91607
800-452-CURE (2873)
818-487-7455 telephone 818-487-7454 fax
www.myeloma.org
Written Testimony of the International Myeloma Foundation
regarding
NCI Cancer Research: Today's Progress; Tomorrow's Challenges
Subcommittee on Health
Energy and Commerce Committee
US House of Representatives
March 23, 2010
make gains in the fight against myeloma and other deadly cancers. Please do not
hesitate to contact us should you have any questions or need more information.
12650 Riverside Drive Suite 206, North Hollywood, CA 91607
800-452-CURE (2873)
818-487-7455 telephone 818-487-7454 fax
www.myeloma.org