Susie Novis, President
International Myeloma Foundation
Submitted to the
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 and I serve as the president of the
International Myeloma Foundation, the world's oldest and largest nonprofit
organization supporting the needs of the multiple myeloma community. I want to
thank you for the opportunity to present the views of the IMF in support of the
One Voice Against Cancer coalition agenda. I am here representing not just the
multiple myeloma community I serve, but all cancers.
Multiple Myeloma: An Incurable Cancer
Multiple myeloma is an incurable cancer of the plasma cells of the bone
marrow. The myeloma patient population represents one percent of all cancer
diagnoses and two percent of the cancer mortality rate. Approximately 15,000
Americans will be diagnosed with myeloma this year and about 12,000 will die.
Myeloma patients experience bone fractures, particularly in the vertebrae and
hips, and continuous, degenerative symptoms of bone loss that ultimately leads
to death. Additional complications include kidney failure, severe anemia,
pneumonia, shingles, and, in advanced cases, physical disability.
Patients live an average of three to five years after diagnosis, although
some survive significantly longer. The five-year survival rate for myeloma
patients between 1974 and 1993 increased from 24 to 28 percent, suggesting that
little progress has been achieved. The one thing that has improved, thanks to
drugs like bisphosphonates-a bone strengthening drugand thalidomide, is the
general quality of life of most patients.
No categorical causes of myeloma are known. Myeloma incidence may be linked
to prolonged or excessive environmental exposures to toxins or other agents.
These suspected linkages cause patients to live in tragic 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 myeloma. 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
research suggesting a possible linkage between myeloma 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
Research has found that myeloma is more prevalent in western industrialized
countries. Within those 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, it is cancer associated with
modern living. As the world becomes more industrialized, it is not illogical to
assume that rates of myeloma incidence will rise accordingly.
The International Myeloma Foundation: Putting Patients First
Today is a very special and emotional day-it is an anniversary for me.
Thirteen years ago today, my late husband Brian Novis and I were married. Brian
was diagnosed with multiple myeloma in 1988 at the age of 33. He found out he
had the disease after taking a life insurance physical examination prior to our
wedding. Like virtually all myeloma patients, the first time he heard about the
disease was when he was diagnosed. Among his greatest frustrations was a lack of
access to knowledge about the disease and specialists.
So he responded by founding the IMF in 1990 with the help of other patients,
doctors, and researchers who were interested in the field. The first, and in
many ways, still the most important, project of the IMF was the establishment of
a toll-free hotline that provided information to patients and family members
when they most needed it. The IMF has grown to become the foremost resource
about the disease for patients and doctors alike. In 1992, the IMF hosted the
first worldwide clinical conference ever held for MM specialists. The results of
that conference led to the initial publication of Myeloma Today, which, at the
time, was the only periodical focused exclusively on MM research and patient
Now in its twelfth year, the IMF has a membership of more than 90,000
individuals worldwide. We have conducted more than 41 Patient/Family Seminars to
provide individuals access to the latest knowledge and the foremost experts.
That, in turn, points out the value of the most important service the IMF
provides. Through use of the hotline and mail requests, the IMF sends out-at no
charge- more than 1,000 patient information packets per month. In fact, if you
are affected by myeloma, you know about the IMF-because it is likely the first
source of comprehensive information you ever received about the disease. And
since 1994, the IMF has funded 42 Brian D. Novis Research Grants totaling $2.7
Brian's doctor said he had three to five years to live. Our family and
friends hoped and prayed that he was wrong, that we would be able to raise a
family and have a long and happy life together. We were wrong-the doctor was
right. Brian died in 1992, just four years after his diagnosis at the age of 37.
Our life together, however brief, was happy. And even though we never had
children we did create a family. Our family became the International Myeloma
Foundation; a family comprised of patients, family members, caregivers,
scientists, health care professionals, and friends. I would like to introduce
you to two members of our family.
Mary Goodwin, who is here with me today, is from Cedar Rapids, Iowa. Mary's
story is typical, unfortunately, of so many myeloma patients. Mary, who works as
a nurse, was diagnosed with myeloma in 1996 after injuring her back while
lifting a patient preparing for surgery. Although she is a nurse, Mary had to go
back to her college text to find out what myeloma was after being told she had
it. The old text informed her that the disease was terminal and had a life
expectancy of one year. Mary's husband of 20 years runs a family-owned
restaurant. Her 14 year-old daughter has spent almost half her life knowing that
her mother is fighting a rare, debilitating cancer. And Mary must continue to
work in order to keep her life insurance, for which the annual deductible has
been paid by February of each year. But, as she said to me, she would "just
like to keep on going. The other choices aren't so good."
Brad High of Haverford, Pennsylvania lost his seven-year battle with myeloma
on May 22. Brad attended the first two annual One Voice Advocacy Days and had
made plans to be here today. Brad was the leader of our Philadelphia Multiple
Myeloma Networking Group, arguably the most active myeloma support group in the
nation. He had had two stem cell transplants and went back to the University of
Pennsylvania hospital in late April to receive a third. Brad had his own
business making wedding cakes. He loved to be with people and make them happy.
He was an inspirational leader of the networking group who believed in advocacy
to raise awareness and federal research funding, although he realized that he
would likely not benefit him. Brad believed in One Voice Against Cancer because
he understood the need for all cancer advocates to work together and avoid the
inclination to say that his cancer was any more or less important than anyone
One Voice Against Cancer
The IMF became involved in public policy advocacy in September 1998, during
The March for Cancer Research on the Mall here in Washington, DC. Our initial
focus, working in large part with this Committee was to include report language
on myeloma in the annual appropriations bills. But since then, we have learned
that this committee does not appropriate funds according to specific disease
categories. And for our constituency to be effective, we would have to reach out
to join forces with other groups fighting cancer. That is why we have become so
supportive and active in One Voice Against Cancer.
One Voice Against Cancer is a coalition of more than 40 national and
community-based organizations and collectively represent tens of millions of
Americans. One Voice Against Cancer focuses its advocacy on the funding of
cancer research and application programs at the National Institutes of Health (NIH),
the National Cancer Institute (NCI), the National Center for Minority Health and
Health Disparities (NCMHHD), and the Centers for Disease Control and Prevention
One Voice Against Cancer was formed more than two years ago to unify the
public health community on a clear and consistent message regarding the need for
a comprehensive, targeted federal approach to cures for the spectrum of cancers
affecting our nation. In our view, this would lead to the discoveries needed to
make available better prevention and early detection strategies, treatments, and
therapies that will ultimately lead to cures for the various cancers.
One Voice supports the following appropriations priorities for fiscal year
- $27.3 billion for the NIH to fulfill the commitment to double NIH funding
- $5.69 billion for the NCI, the full amount recommended in the NCI
Director's Bypass Budget.
- $199.6 million for the NIH Center for Minority Health and Health
Disparities to enable the Center to fulfill its important mission,
particularly as it concerns the disproportionate incidence, morbidity, and
mortality that cancer has in many racial and ethnic minority populations.
- $348 million for the CDC cancer education, outreach, prevention and
screening efforts that apply the important research done at NIH to those
affected by or at risk for cancer. Specifically, OVAC recommends the
following funding levels for CDC cancer-related programs:
- $10 million for the Comprehensive Cancer Control Initiative;
- $55 million for the National Cancer Registries Program;
- $25 million for the Colorectal Cancer Prevention and Control
- $20 million for the Prostate Cancer Control Initiative;
- $220 million for the National Breast and Cervical Cancer Early
- $8 million for the Ovarian Cancer Control Initiative; and
- $10 million for the National Skin Cancer Prevention Education Program.
Funding for all of these critical agencies and programs must be efficiently
and effectively utilized so that the American people reap clear and rapid
benefits from research and its application. To that end, we look forward to
working with you to ensure that these federal agencies responsibly meet their
The Bypass Budget
We would like to highlight in our testimony the importance of funding at the
level recommended by its Director in the Bypass Budget. Under the National
Cancer Act of 1971, NCI's Director is required to submit directly to the
President an annual budget estimate to provide the national cancer research
program with the technology and investment it needs. This Bypass Budget is
prepared and submitted prior to the submission of the annual budget to Congress,
and is unique among all federal medical research institutes. At current funding
levels, which have fallen short of the requested amount each year, NCI is able
to fund only about 28% of its peer-reviewed and approved grants.
In the view of the IMF, fully funding the Bypass Budget would offer hope to
those Americans who will be diagnosed with rarer, deadly forms of cancer that
still lack early detection tools or treatment options. We feel this is
especially true since Congress does not appropriate funds for specific medical
research programs, projects, specific diseases, or cancers. It does not take
much of a stretch to understand what achieving the Bypass Budget could
potentially do to find better treatments and cures.
Fulfilling the Bypass Budget would provide resources for new research
initiatives for the cancers that have been traditionally neglected by NCI.
Patients diagnosed with one of the seven deadliest cancers-esophageal, kidney,
liver, lung, multiple myeloma, pancreatic, and stomach-generally face the
bleakest choices of all those diagnosed with cancer. The five-year relative
survival rates for these cancers range from a low of 4 percent for pancreatic
cancer to 28 percent for multiple myeloma. Without dramatic increases in
research on each of the deadly cancers, the outlook for diagnosed patients will
The New Paradigm
We strongly believe in NCI Director Andrew von Eschenbach's emphasis on the
New Paradigm for cancer research. The New Paradigm focuses on expanding and
translational research-applying discoveries in the lab toward more immediate and
direct applications for patients. The New Paradigm also puts more emphasis on
the most promising, state-of-the-art research of genomics-drugs and therapies
that target and treat cancer at the molecular level.
The New Paradigm, which replaces the "search and destroy" mindset
with "command and control," demonstrated with drugs like Gleevec for
chronic myelogenous leukemia, Iressa for lung cancer, or Herceptin for breast
cancer, targets the molecular mechanisms that trigger growth of cancers without
debilitating or destroying healthy cells, organs, or systems. The new genomic
drugs have proven to be successful in diminishing-or eliminating-many side
effects of treatment. Moreover, they have the potential for increasing long-term
survival and enhancing quality of life for people living with cancer.
When we look at cancer through the genomic lenses of the New Paradigm,
molecular targets will not be conveniently categorized by body parts or tumor
types. The key is to identify, through research, the targets that trigger the
malignant growth of cancer cells. For cancers like myeloma, there may be dozens,
if not hundreds, of targets to be identified. And some of the targets for
certain cancer types, at the molecular level, may look more like other cancer
types. For example, hematological cancers like myeloma or leukemia may actually
have some targets in common with targets in cancers of the lung, colon, kidney,
or pancreas rather than other hematological cancers.
In our view, fulfillment of the One Voice Against Cancer recommendations
would provide resources for a New Paradigm linking federal support to the
translational research needed to produce the drugs and therapies for all cancer
patients. Most importantly, however, the future of the cancer research would not
be dictated by trying to carve out turf for particular cancer disease
It would, instead, ensure that all cancer types are represented in the new
research and create a logical, transparent system of cancer research leading
down a path from incurable condition to chronic, manageable disease to,
ultimately, cures for all cancer types. It would provide the framework to
encourage cancer researchers to focus more on molecularly targeted therapies. It
would allow NCI to engage in programs to explore research initiatives in the
smaller, deadlier cancers that have few market incentives to develop new drugs
and therapies. And it would do so based on scientific opportunity, not political
popularity contests. This molecular approach is indeed the ultimate expression
of "a rising tide lifting all boats."
Mr. Chairman, we at the IMF applaud the recent advances in cancer research.
But our patients and family members become more impatient for results about
their disease the more they hear about advances in other fields. Everyone in
this room has been touched by cancer. Everyone in this room knows someone who
has cancer. I lost my husband to myeloma, my mother died of colon cancer, and I
have lost innumerable friends to every form cancer chooses to take. As you know
as well as anyone, Mr. Chairman, cancer destroys not just the person; it
destroys the family, the community. It breaks hearts and it crushes dreams.
When Brian Novis first decided to start the International Myeloma Foundation
I was somewhat skeptical - but he looked at me and said "Susie, one person
can make a difference two people can make a miracle." As I look around this
room I see lots of people-you have the ability to make miracles happen. We can
cure cancer. But it is going to take money and sustained commitment, 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