Marching Against Cancer
“I’ve got 250 people coming to Washington, DC at the end of September and I don’t have the slightest idea what to do with them.” That’s how I remember a call with Susie Novis twenty-six years ago this week, in 1998. Less than four years later, Novis would represent the entire cancer community before a Senate subcommittee.
Susie and I had casually known each other through my soon-to-be wife, Romi, who had been the first-ever fundraiser for International Myeloma Foundation (IMF) since 1997. Since I didn’t have a clue about myeloma or know much about cancer, I had no idea why she was calling me at my office in the Los Angeles suburbs.
“There’s going to be a big cancer event called The March,” Susie said before getting to the 250 people the IMF expected to attend. “At least 100,000 people will be on the Mall representing most types of cancer and we’ll have a table.” Beyond that, it was all new to her. Public policy had never been part of the IMF agenda; they were focused on getting information to patients and working with physicians.
On the other hand, I knew a bit about organizing a DC lobby day, having organized constituent meetings, organizational conferences and lobby agendas for a civic education organization and spending two years on a U.S. Senate staff. I was familiar with the appropriations process and how to lobby and agreed to help on my free time. I’d take a week’s vacation to help out at the end of September before going back to my regular life.
Technically, I should have known more about myeloma. Less than two years earlier Romi and I were invited to the Friday evening dinner of the IMF Patient & Family Seminar at Universal Studios in Burbank by her father. He was attending to learn about myeloma on behalf of his wife, Romi’s step-mother, who had been diagnosed with myeloma in early 1996.
Following a reception and dinner, a film was shown featuring myeloma patients, including then-IMF board member Kathy Giusti, who had been recruited to join by Michael Katz. On the drive home, I recall remarking that it seemed so sad and tragic but, despite that, I still didn’t know what myeloma was. It was never really explained to “outsiders” like me. Even after Romi began with the IMF, all I really knew was it was a cancer having to do with bone, so I didn’t know much.
Now less than two years later, I was preparing myeloma patients to speak about their disease to members of Congress, something that had never been done before. But their message would be part of the bigger message of The March.
When I spoke to the former director of the National Cancer Institute (NCI), Richard Klausner – he was the director at the time of The March – about Michael Katz, he cited Ellen Stovall and Ellen Sigal as two additional key figures who propelled cancer advocacy forward in the 1990s.
While Mike tended to focus on what patients could do on the administrative side of cancer advocacy, well out of the spotlight, Stovall created and led the National Coalition for Cancer Survivorship and became one of the leading cancer patient voices on the national stage. Sigal founded the Friends of Cancer Research to create connections between researchers and members of Congress to educate them on the promise of research.
The Cancer Letter – which is to the DC cancer community what The Wall Street Journal is to investors – reported that Stovall conceived of a cancer event on the level of Earth Day. She envisioned an event in Washington that would revolve around cancer patients and policy, a day to crowd out all other issues so policy makers would understand and prioritize the full cost of cancer investments needed to be made. A short struggle took place with Michael Milken, the convicted junk bond trader of the 80s who, as a prostate cancer patient, was spending money to take over cancer advocacy, but Stovall emerged as the acknowledged leader.
In an appearance with Milken and others on CNN’s The Larry King Show on April 7, 1997, Stovall was goaded into announcing, to her subsequent horror, that a cancer constituency existed. “Where it will march, when it will march, and how many will march with us is yet to be decided.”
Within minutes, Stovall realized she “was irresponsible. We are talking about a vulnerable population. Giving them hope then failing to follow through would constitute a betrayal.” Rather than bailing out, Stovall soon became the leader, Sigal started working overtime on her networking skills, and Milken, joined by cancer philanthropist Sidney Kimmel and some pharmaceutical companies, would fund The March and advertising.
A consultant soon recommended The March be organized on “the franchise-type structure” of Earth Day. “This involves relatively autonomous local organizations with a strong national structure, consistent educational and advocacy message, professional support, and an umbrella structure to leverage local efforts.” The IMF was a perfect fit for event set for September 25-26, 1998.
As an organizing goal, The March leaders adopted an idea which had been evolving in Republican circles after Bob Dole’s defeat in the 1996 presidential election. As he considered legislative priorities for the upcoming year, incoming Senate Republican leader Trent Lott said, “We think medical research has been kind of starved out.”
Phil Gramm (R-TX) subsequently introduced a bill to increase overall scientific research funding, including a target to double NIH funding over ten years. Connie Mack (R-FL), co-chair of the Senate Cancer Caucus, a voluntary coalition of senators, went Gramm one better and introduced a resolution expressing the Senate’s desire to double NIH funding over five years, not ten, from $13.5 billion to $27 billion.
The March adopted Mack’s approach. Advocates would ask their senators and representatives to commit to start in the next annual appropriations bill. Arlen Specter (R-PA) supported Mack’s resolution, but as chairman of the appropriations subcommittee funding NIH, he called it a “lofty goal” with little chance of success. Tom Harkin (D-IA), the subcommittee’s ranking member who would become chairman after the 1998 elections and author of the landmark Americans with Disabilities Act in the early 1990s, embraced the goal as a core principle.
In the weeks after Susie’s call, we put together a plan. I researched and wrote talking points, scheduling visits between confirmed attendees and their members of Congress, and together we planned a meeting at a board member’s house on the evening before the event began for a social hour and last-minute instructions before lobbying visits. I had spoken to most by phone over the previous weeks and pledged to accompany some of them the next day.
At each meeting, advocates told members of Congress or their staff a little about myeloma: what it was, what the dismal survival statistics were, how it might be caused, that there were no new drugs and a relatively new procedure called stem cell transplants were being done on some, and, most importantly, why more research funding was desperately needed.
My first meeting was with the congressman of Marilyn Alexander, a myeloma patient from Philadelphia who had an allogeneic stem cell transplant with cells donated from her sister, Sharon. Both are active with Philadelphia support group today. Through the course of the day, I bounced between the House and Senate sides of Capitol Hill offering support when asked. And we learned how prevalent myeloma was; although few had heard of the disease before, we were surprised by the number of people who were aware of or related to someone with it.
Saturday, September 26 was a sunny, hot celebration of cancer patients and advocacy organizations on the Washington Mall. On one end, was a large stage featuring emcee Ellen Stovall as she introduced political figures, musicians, and even Queen Noor from Jordan with the Capitol building framing the background. On the Mall itself, an estimated 150,000 cancer advocates – patients, caregivers, families, friends, concerned citizens – gathered to listen to them, to each other, and to mingle among the tables lined up on either side of grounds with information on virtually every cancer type.
Additionally, The Cancer Letter reported,
In a large tent, panels of cancer researchers fielded questions about their work from audiences at two sessions during the day. In other area, people pinned messages about themselves or their family members with cancer to a “Wall of Courage.” Sections of a quilt made by and for children who had cancer or who had died of cancer were displayed on the grass.
Simultaneous events were scheduled for every state capitol and some large cancer centers. The March concluded with a candlelight vigil with “an estimated 12,000 to 14,000 people gathered around the Reflecting Pool at the Lincoln Memorial.”
The IMF table greeted hundreds, if not thousands, of attendees that day, many who were shocked to see public information about myeloma, and others who learned about the disease for the first time. For the IMF and other attendees, The March created a sense of excitement and optimism few experienced since their myeloma came into their lives, going home with newly found inspiration.
Novis saw advocacy as a positive and motivating force for the myeloma community. She was getting calls and messages from people asking what they could do next. Within three weeks, I became a consultant for the IMF, it’s first and only Director of Public Advocacy. It was now my job to be a voice for the myeloma patient community.
Despite Stovall’s comment that The March “surpassed our expectations” and concluded “It was worth fighting for. It was worth it,” the organization was dissolved by Kimmel and Milken just days later. Perhaps the most effective cancer-based grassroots event in the history of Washington, DC turned out to be a one-time event, not, as Stovall had hoped, a growing, regular part of the annual political calendar.
Many of the fissures threatening to undermine the concept from the start reemerged, somewhat under the radar screen at first, but with greater consequence just a few short years later, when, once again, the cancer community would fracture after one of its greatest collective achievements.
Two major players in cancer were not initial supporters of Stovall’s idea. The National Breast Cancer Coalition (NBCC), which was integral in the birth of cancer advocacy itself a few years earlier, felt, according to The Cancer Letter, “participation could pose the danger of diluting the message, getting involved in pursuing someone else’s agenda, and-possibly—the threat of having to compete for funding with a visible new entity.”
The American Cancer Society (ACS) had initial reservations similar to those of the NBCC, but reversed a decision to prohibit local chapters from participating. Although not an official sponsor, ACS did “share information about this campaign with the public.” Its commitment would change dramatically with the void created by the enthusiasm built up by The March and the abrupt end of it as an organization.
By the start of 1999, ACS revamped its government relations office with Dan Smith, a former Harkin staff member. He built on the momentum of The March, keeping together most of its members and adding other cancer organizations and coalitions to create One Voice Against Cancer (OVAC). ACS provided funding but encouraged members from participating organizations to assume leadership roles.
OVAC seized the NIH doubling goal as their guiding principle, reasoning National Cancer Institute (NCI), as the largest of the NIH institutes, would have its funding doubled as well. The “rising tide lifts all boats” sentiment of the New Frontier found new life in medical research funding advocacy.
In the early 2000s, Mark Smith (no relation to Dan Smith) told me the history behind the origin of the doubling idea. By then he had become a lobbyist and was director of the National Coalition for Cancer Research (NCCR), an organization made up of comprehensive cancer centers for which Mark put together regular briefings on cancer issues for members of Congress and staff.
In the 1990s, Mark joined Mack’s senate staff, first as a driver, eventually working his way up to advising the senator on health policy. In 1995, Mack and Dianne Feinstein (D-CA) formed the Senate Cancer Caucus, with Mark handling all the nuts and bolts of staff work to create and maintain it until Mack retired in 2000. From the National Genome Project to the Food & Drug Administration to Medicare and Medicaid Policy, Mark had his fingerprints all over legislation affecting virtually every piece of health legislation in the 1990s.
Sometime after 1995, when Mark and Mack were flying back to DC from Florida, they discussed what could be done to shine a light on cancer and raise NCI funding, hitting upon the idea of setting a goal to double NCI funding in five years.
As they thought about it, they realized this might alienate all the other NIH constituencies, which was not their goal. “So,” recalled Mark, “to get political support to raise NCI funding, we have to broaden it to NIH funding!”
OVAC did make a difference, getting a kick-start by building on the enthusiasm created by The March. NIH funding in 2003 was $27 billion, double the $13.5 billion from five years earlier.
The same forces threatening to keep The March coalition from coming together in the first place eventually succeeded after the doubling was achieved. Rather than recalibrating cancer policy into a national priority, cancer advocacy became a victim of its own success. The March proved to be an exception, not an enduring rule.
Until 2000, paid cancer advocates were rare. Many were volunteers who were lucky to be reimbursed for their costs. More research was the highest cancer patient priority at the time, together they were successful in achieving their goal. As more and more organizations saw the potential in advocacy, they professionalized. Whatever unity that existed on the scale of The March or OVAC unraveled quickly.
Cancer public policy became a political commodity, patients could become the voice. Limited coalitions were organized around arcane regulatory or patient issues such as oral drug insurance coverage and drug adherence. More and more, patients were being told what issues were important to them, often aligning with specific sponsor corporate goals. Even OVAC shrunk to become the grassroots arm of the ACS Cancer Action Network and its policy agenda.
Professional advocates became accountable to boards. And boards wanted to know what had been done to help the organization or the specific constituencies served by it. Lobby days, if they existed at all, would be small, for the organizations involved. The smiling pictures of constituents in congressional offices were nice souvenirs, but had little effect.
The proof can be found in the annual funding levels for NIH. Since 2003, NIH funding has remained relatively flat. When accounting for inflation, NIH’s 2024 funding level of $47.1 billion has about the same purchasing power $27 billion had in 2003. Cancer research funding, unlike defense spending, has not become a national priority despite current annual numbers of two million newly diagnosed cancer patients and more than 600,000 deaths.
Until the Biden administration, which has made cancer a priority, previous administrations – both Democratic and Republican – have underfunded NIH in annual presidential budgets and usually appropriations leadership gets the number back up. In the past three years, it has been the other way around, Congress has lowered the administration’s recommendation.
This recitation of numbers and budgets ignores one important fact: at least 48 million more Americans are alive now than in 2003. As measured on a per capita basis, funding for research has gone down. This has translated into less research activity for all diseases, just as our population is rising. It also ignores environmental and climate-caused exposures to which people are susceptible.
I became both a member and organizer of the myeloma community twenty-six years ago after being involved with The March, one of the most inspiring events, political or otherwise, I’ve ever experienced. It gave me the optimism about what a member of The March Research Task Force said at a Senate Cancer Caucus hearing:
“It is time to make cancer our highest national priority and undertake a national initiative that will mark the beginning of the end of cancer.”
Participating in The March felt as though this might happen, to become cancer’s equivalent of the Civil Rights March of 1963. Unlike that seminal event, however, The March has largely been forgotten. I believe individual cancer organizations have become too enamored with parochial priorities and let the promise of political collaboration demonstrated by The March wither away.
One is left to wonder how much more might have been achieved if national recognition, urgency, and cooperative spirit existed about cancer and disease.
I had no idea that the beginning of the research expansion was so recent. Keep in mind I am a 72 year old retired guy when I say recent!