Testimony of Susie Novis
President, International Myeloma Foundation
Senate Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies
The Honorable Tom Harkin, Chairman
June 4, 2002
Mr. Chairman, my name is Susie Novis, President of the International Myeloma
Foundation, the world's oldest and largest nonprofit organization supporting the
needs of the multiple myeloma community.
Multiple myeloma is an incurable cancer of the plasma cells of the bone
marrow. Myeloma patients represent one percent of all cancer diagnoses and two
percent of the cancer mortality rate in the U.S. Myeloma patients experience
painful bone fractures, particularly in the vertebrae and hips. Additional
complications include kidney failure, anemia and infection that ultimately lead
I am here representing not just the multiple myeloma community I serve, but
all cancers¾the cancers represented by One Voice Against Cancer, a coalition of
more than 40 national and community-based organizations that represent tens of
millions of Americans. One Voice Against Cancer was formed to unify the public
health community on the need for a comprehensive, targeted federal approach to
develop cures and expand prevention and early detection for the spectrum of
cancers affecting our nation.
On behalf of One Voice Against Cancer, I would like to ask this Committee to
fulfill the following appropriations requests for fiscal year 2003:
- $27.3 billion for the National Institutes of Health to fulfill the
five-year doubling pledge;
- $5.69 billion for the National Cancer Institute to fulfill the NCI Director's Bypass Budget recommendation;
- $199.6 million for the National Center for Minority Health and Health
Disparities to lower the disproportionate rates of cancer incidence and
mortality among medically underserved communities; and
- $348 million for the Centers for Disease Control and Prevention to expand
its cancer education, outreach, prevention, and screening programs.
We are particularly supportive of the idea that Congress fully fund the NCI
Director's Bypass Budget. Fully funding the Bypass Budget will provide
hope to those Americans who will be diagnosed with rare, deadly forms of cancer,
which include myeloma, kidney, and pancreatic cancer. Five year survival
rates range from 4% for pancreatic cancer to 28% for myeloma. Without
dramatic increases in research funding, the outlook for these patients will
Fulfilling the Bypass Budget will provide resources for new research for
cancers that have been traditionally underfunded by NCI, allowing NCI Director
Dr. Andrew Von Eschenbach to implement the New Paradigm for cancer
research. This approach will lead to targeted therapies that treat cancer
at the molecular level. This molecular approach is indeed the ultimate
expression of "a rising tide lifting all boats."
Today is a very emotional day for me. It's my anniversary.
Thirteen years ago today, Brian Novis and I were married. Brian was
diagnosed with multiple myeloma when he went in for a blood test in preparation
for our marriage. Brian was only 33 years old at the time.
His doctor told him he had 3 to 5 years to live. We prayed that the
doctors were wrong, that we would be able to raise a family and have a long and
happy life together. Brian died in 1992, just 4 years after his
diagnosis. But, even though we never had children we did create a family,
with the help of Dr. Brian Durie-- the International Myeloma Foundation: a
family of patients, caregivers and professionals. I would like to
introduce you to members of our family.
Mary Godwin is a nurse from Cedar Rapids, Iowa who was diagnosed in
myeloma in 1996 after injuring her back while lifting a patient preparing for
surgery. Mary's husband of 20 years runs a family-owned restaurant.
Her 14-year old daughter Lanissa has spent almost half her life knowing that her
mother is fighting a rare, debilitating cancer. But, as Mary said to me,
she "just needs to keep on going. The other choices aren't so
Brad High of Haverford, Pennsylvania believed strongly in One Voice
Against Cancer. He understood the need for cancer advocates to work
together and avoid the inclination to say that one cancer is more important than
another. Brad planned ot be here today but he lost his seven year battle
with myeloma on May 22nd.
Everyone in this room has been touched by cancer. I lost my husband to
myeloma, my mother to colon cancer, and I have lost many dear friends to all
forms of cancer. You know as well as anyone, Mr. Chairman, cancer destroys
not just the person-- it destroys the family, it destroys the community.
It breaks hearts and it crushes dreams.
When Brian Novis decided to start the International Myeloma Foundation, I was
skeptical-- but he looked at me and he said "Susie, one person can make a
difference-- but two people can make a miracle." As I look around
this room I see many people who can make miracles happen. Cancer can be
cured. It's going to take money and commitment to get the job done,
especially for cancers like myeloma. Some of you may be thinking,
"How can we afford to increase the funding for cancer research?"
But, I say, how can we afford not to?
We are One Voice Against Cancer-- and our voices must be heard. We're
your voice too.