Rising Tides
June 4 was the twenty-second anniversary of International Myeloma Foundation (IMF) President Susie Novis’ testimony in support of National Institutes of Health (NIH) funding before a United States Senate Appropriations subcommittee.
Susie was representing a coalition of virtually all cancer types, not just myeloma, to urge completion of a five-year initiative to double NIH funding. It was approved by Congress later that year. We continue to reap the rewards of this investment.
Speaking briefly about myeloma and the state of disease at the time, Susie’s comments were based on old, incomplete data. NCI statistics are typically three-to-five years old, which is normal for large-scale analysis over time. From today’s perch, we can get a glimpse of the very different world she and the myeloma community perceived as compared to today.
Twenty-two years ago, myeloma incidence, the total number of people diagnosed, was 5.8 per 100,000 Americans. Mortality, the number of people who die of the disease, was 3.8 per 100,000. This percentages translated into more than 13,000 and 10,000 lives, respectively. Approximately 40% of those diagnosed would live at least five years, meaning 60% would not. At any given time, approximately 20-30,000 Americans were living with a myeloma diagnosis.
Positive trends in stem cell transplant, thalidomide, and emerging data about a new drug, PS-341—which would become better known as bortezomib, or Velcade—was expected to bring more good news in the coming year. PS-341 would go on to become bortezomib, today a myeloma backbone drug. Back then, none of this was known as precisely as we do today; there were educated guesses, but they hadn’t yet been confirmed.
While it was indisputable that myeloma rates were increasing over time, something was happening that had not yet been noticed or become common knowledge: the graph curves of annual myeloma survival and death were starting to move apart. Previously, they had always been parallel and moving upward, signifying increases in both diagnosis and death rates.
Twenty-two years later, here’s what the annual statistics tell us: myeloma incidence, is 7.1 per 100,000, or about 36,000 Americans, mortality, is less than 13,000. At first glance, it seems the numbers are increasing. But that’s deceptive.
Twenty-two years later, the American population has increased by 53 million people. Plus, since cancer is overwhelmingly a disease related to aging and the youngest baby-boomers are in their sixties, numbers would naturally be expected to increase.
An unknown large number can also surely be attributed to rapid improvements in diagnostic techniques. I would argue incidence figures prior to 2000 missed a lot; people were dying of myeloma who never knew they even had it. Horror stories of patients misdiagnosed for months-to-years continue to be told, but significantly fewer than decades ago.
The number that should both temper and illicit excitement is that of mortality. In absolute numbers, it seems that little has changed between the numbers of 2002 and today, but the population increased by at least 16% over the same period!
Like everyone else, Susie, however, didn’t know what was coming. It’s worth considering her remarks, what they tell us about the past twenty-two years, and what they mean moving forward.
A strong financial commitment to NIH, according to Susie, “would lead to the discoveries needed to make available better prevention and early detection strategies, treatments, and therapies” which would benefit “rarer, deadly forms of cancer that still lack early detection tools or treatment options” like myeloma.
She spoke of a need to “provide resources for new research initiatives for the cancers that have been traditionally neglected by NCI (the National Cancer Institute, the largest of NIH’s institutes)” citing “five-year relative survival rates for these cancers range from a low of 4 percent for pancreatic cancer to 28 percent for multiple myeloma.” The 40% cited above had not yet been made public and Susie was working from publicly available data at the time.
Susie explained two concepts now common parts to the bigger cancer picture: translational research and genomics. For the former, a recommitment and expansion of the idea the War on Cancerintroduced decades earlier, “applying discoveries in the lab toward more immediate and direct applications for patients” was needed.
But the biggest idea that few who were not cancer insiders understood at the time, almost science fiction, was “genomics—drugs and therapies that target and treat cancer at the molecular level.” It is vital to remember that cancer treatment, once type had been determined, was generally a one-size-fits-all treatment strategy.
Indeed, even the word genetics and genomics were a bit heady for cancer back then. The most used term at the time was “molecular approach” to cancer treatment, one that creates what today is still sought-after, personalized medicine. Today, myeloma would be unthinkable without genetic testing and genomic approaches to treatment. Twenty-two years ago, it was not even conceivable to the vast majority of cancer patients.
Susie closed her statement with a nod to the New Frontier, that this “approach is indeed the ultimate expression of “a rising tide lifting all boats.” For myeloma, that rising tide of funding plus the rapidly advancing field continued to increase the unprecedented numbers of young medical school graduates who would choose hematology, oncology, and myeloma as specialties.
The days of fifty or so myeloma experts meeting at small myeloma sessions of the annual meetings of the American Society of Hematology (ASH) had passed. In the last ASH prior to the pandemic, because of auditorium size restrictions, the annual comprehensive overview of myeloma was held twice in two days attracted 8,000 attendees for each session for a total of 16,000.
This too, is reflective of NIH investments, because the bulk of funding is sent back to cancer centers throughout the nation. They are producing community oncologists and specialists making quality care accessible to more patients than ever, although much is still to be achieved.
The doubling of the NIH budget from 1998-2003 from $13.5 billion to $27 billion was the third substantial injection of federal funds for medical research. First was the New Frontier-related funding of the early 1960s, which created the first large scale cancer centers, as we saw with MD Anderson in Houston, Texas.
The War on Cancer program of the Nixon Administration of 1971 significantly boosted funding to create comprehensive cancer centers; seventy-four in thirty-six states exist now. Nixon naïvely believed “a cure for cancer” would be achieved by 1976, a prediction that seems macabrely innocent today.
One comment, however, Susie made, summed up a great barrier to cancer research and treatment: “it is going to take money and sustained commitment.” It is a lesson that no administration made a high priority until the Biden administration, which had its lofty increase in NIH funding severely curtailed by Congress. In prior years — with the exception of the consensus effort from 1998-2003 — it was Congress that elevated NIH funding annually to overcome unsatisfactory administration proposals.
Because, as a nation, as Susie summed up in her testimony, “how can we afford not to” make medical research a national priority? Unfortunately, we, as a nation, haven’t done as much as we are capable of doing as a nation. The political will does not exist.
Transcript of testimony by 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 (IMF), 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. Myeloma patients experience bone fractures, particularly in the vertebrae and hips, and continuous, degenerative symptoms of bone loss that ultimately leads to death.
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 responded by founding the IMF in 1990 with the help of other patients, doctors, and researchers who were interested in the field. The IMF has grown to become the foremost resource about the disease for patients and doctors alike.
Now in its twelfth year, the IMF has a membership of more than 90,000 individuals worldwide.
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. 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. 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 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 has been active in One Voice Against Cancer, a coalition of more than 40 national and community-based organizations and collectively represent tens of millions of Americans since it was founded more than two years ago. One Voice 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 was formed 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.
The Bypass Budget
We are particularly supportive of the idea that Congress fully fund the NCI Director's Bypass Budget. Since the National Cancer Act became law, as you know, the Bypass Budget recommendation has never been fully funded.
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.
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.
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.
To access a complete video of the hearing, click here. Susie’s interaction with Sen. Harkin can be found at 1:46:49-1:48:10 and 1:50:32.
I’ll put on my former hats as government teacher/U.S. Senate staffer/myeloma public policy advocate to explain this process more deeply during the Summer doldrums. Although it is vitally important, the details tend to put most to sleep.
Next up will be a reconsideration of Mike Katz’s legacy.