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Special Edition - June 2002 Volume 4, Issue 11:
OVAC 2002 Advocacy Day Senate Hearing: Oral Testimony of Susie Novis
Testimony of Susie Novis
President, International Myeloma Foundation
before 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, 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 to death.

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 remain bleak.

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 good."

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.

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