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OVAC 2002 Advocacy Day Senate Hearing: Written Testimony of Susie Novis

Testimony of

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 questions.

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 issues.

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 million.

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 else's.

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 (CDC).

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 (FY) 2003:

  • $27.3 billion for the NIH to fulfill the commitment to double NIH funding by FY2003.
  • $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 Initiative;
    • $20 million for the Prostate Cancer Control Initiative;
    • $220 million for the National Breast and Cervical Cancer Early Detection Program;
    • $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 obligations.

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 remain gloomy.

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 categories.

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 voice too.

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