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Survivorship

The Birth of the Cancer Survivorship Movement

Judy Pearson offers a compelling and inspiring historical perspective of the formation of the cancer survivorship movement in the United States, and what this means to cancer survivors today.
June 2021 Vol 7 No 3
Judy Pearson
Founder & Executive Director, A2ndAct
Phoenix, Arizona
First National Coalition for Cancer Survivorship, 1986.

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” History isn’t clear on exactly when Margaret Mead, a well-known anthropologist, said this before her death in 1978. But there is no better example of “thoughtful, committed citizens” than those who gave birth to the cancer survivorship movement.

In his 1982 book, Vital Signs: A Young Doctor’s Struggle with Cancer,1 Fitzhugh Mullan, MD, chronicled his 1975 diagnosis and treatment of a patient with seminoma. This, and his wildly popular article “Seasons of Survival,”2 caught the attention of Catherine Logan, an Albuquerque resident who had been diagnosed with cervical cancer in 1979.

Catherine wrote a letter to Dr. Mullan, telling him how his writings resonated with her and the support organization—Living Through Cancer—she had founded with 3 other survivors.3 There weren’t many resources for survivors at that time.

Generating Momentum

Catherine’s letter included an intriguing phrase: “We really should have an alumni association” for cancer survivors, she wrote.3 In early 1986, Dr. Mullan and Catherine met at one of his speaking engagements. She had already begun compiling a list of cancer organizations that were involved with life after cancer treatment.

Catherine was hoping that Dr. Mullan would add his contacts to her list, assuming they would be vast, considering the extent of his medical, speaking, and publishing work. And together, she thought, they could create something exciting. Dr. Mullan fondly remembered Catherine as “diligent to the point of almost being militant. She was like a dog with a bone and not about to give up.”3 Seeing no other recourse, Dr. Mullan agreed to climb on board with her plan.

Getting the Word Out

Catherine created a mailing list of 83 organizations and individuals from their joint contacts. She asked each of them whether they would be interested in being a part of a national cancer coalition, and what they’d like to see the coalition do. In all, 31 responded to her questions with interest, so she followed up with a second letter on August 4, 1986. Her vision, the letter said, was that the National Cancer Survivors’ Network (a temporary name) would be something that would “empower the survivorship movement in general.”3

The trouble was, most people were not even aware there was a survivorship movement, nor exactly what that meant. In the end, 21 (plus Catherine and Dr. Mullan) ponied up $144.70 to cover the meeting fees and 2 nights at Albuquerque’s Barcelona Court Hotel for their planning session.3

The group included people with a history of cancer plus doctors, nurses, social workers, a lawyer, and support group directors. The discussions that ensued in October 24-26, 1986, allowed many in the group to express their post-cancer fears and frustrations for the very first time.

It was exciting to be in the presence of individuals who believed that survivorship, particularly survivorship for more than 3 to 5 years, was possible, according to an interview with Susie Leigh, a founding member of the survivorship movement.

Next Steps: National Coalition for Cancer Survivorship

At the end of the weekend, they had defined the previously nebulous term “survivor” as beginning from the moment of diagnosis and lasting for the balance of life. They created a charter and a plan for their next steps. They passed the hat for donations to cover phone calls and mailing expenses (these were pre-fax/e-mail/Internet days).

They named their organization the National Coalition for Cancer Survivorship, and their work that weekend came to be known as the “Constitutional Convention” of the cancer survivorship movement.4

Ten months later, more than 70 independent and local organizations had joined the National Coalition for Cancer Survivorship, along with hundreds of individuals. Considering the founding meeting as their first assembly, they threw themselves a birthday party a few months later, which attracted 150 attendees from around the country. And for the next 10 years they held such an event every year.

A Growing Movement

The assemblies were a novel idea, too. Albuquerque was the site for the first few survivorship parties, before other cities became the destination. Keynotes, workshops, book fairs, and art projects took place during the 3-day events. Cancer survivors learned from experts, and even more important, the experts learned from the survivors. But the assemblies were only one piece of the growing survivorship movement jigsaw puzzle.

In 1990, the National Coalition for Cancer Survivorship published Charting the Journey: An Almanac of Practical Resources for Cancer Survivors.5 Just like the assemblies, this was a never-before-seen endeavor, a book putting vital information right into cancer survivors’ hands.

Meanwhile, attorney and founding member Barbara Hoffman had been working on addressing the egregious employment discrimination of cancer survivors. Denial of new jobs, demotions, undesirable transfers, loss of benefits, and outright dismissal—not to mention coworkers’ continuing fears of contagion—were happening across the country.6

Over the ensuing decade, she, along with Ellen Stovall (who would become the Executive Director of the National Coalition for Cancer Survivorship in 1992) successfully testified to Congress on behalf of survivors’ rights. Healthcare insurance, too, was a focus for the National Coalition for Cancer Survivorship. It was a hot topic nationally, which was even more crucial for the survivors themselves, given the after-treatment side effects.

On to Washington

The office moved from Albuquerque to Washington, DC, in 1992. They believed that locating themselves between the National Cancer Institute, where cancer research was done, and Congress, which funded cancer research, would allow them to accomplish even more. Then, rather than an annual assembly, in 1995 they convened a congress, which bore amazing fruits, the greatest of which was a white paper focused on the needs of the nation’s cancer survivors.

Ms. Stovall approached the new Director of the National Cancer Institute, Richard Klausner, M.D. Dr. Klausner was so impressed by what he read, that he went to each National Cancer Institute ally in Congress, proclaiming, “We need answers about survivorship, and we need you to support the science that’s going to provide us with the information about what happens to people after cancer treatment,” said Julia Rowland, PhD, in an interview.

Six months later, on October 27, 1996, then-President Bill Clinton created the Office of Cancer Survivorship within the National Cancer Institute.

The March on Washington in 1998: No More Cancer.

A March for Awareness

But the survivorship movement pioneers were not done yet. They conceived of a way to bring their cause into focus—The March. As many as 200,000 people ascended on the National Mall in Washington, DC, on a steamy Saturday in September 1998 for the National Coalition for Cancer Survivorship March. Displays, booths, children’s activities, and more spread out nearly a half mile.

At the far end, practically right by the front steps of Congress, was an enormous stage for the speakers. General Norman Schwarzkopf, Queen Noor of Jordon, Vice President Al Gore, Olympic skating champion Scott Hamilton, and other celebrities with a connection to cancer stood at the podium.

It all ended with a small concert by David Crosby and Graham Nash. Meanwhile, similar mini-marches took place in state capitals across the country. The goal was to bring attention to the numbers of cancer survivors, the fact that cancer doesn’t discriminate—old, young, famous, and ordinary—and that more money must be devoted to survivorship research.7

35 Years Later

This year, the cancer survivorship movement celebrates 35 years. The tireless work of the movement founders, and the legions of others who have joined their ranks in the ensuing decades, has bettered the lives of millions of survivors, including this author.

Now it’s our turn to pick up the flag and march onward. Our work does not have to be grand, or even ultra-organized. But it does have to further the following 4 main pillars:

  1. The medical community must always include survivorship in the cancer continuum, along with prevention, diagnosis, and treatment.
  2. It must ensure that late and long-term side effects are real and must be covered by health insurance plans.
  3. It must ensure that the non-survivor population understands that cancer doesn’t end when treatment does.
  4. And most important, the work we now do on behalf of the cancer survivorship movement must always be with a heart full of gratitude for the “small group of thoughtful, committed citizens” who have changed our world.

References

  1. Mullan F. Vital Signs: A Young Doctor’s Struggle with Cancer. New York, NY: Farrar, Straus, Giroux; 1982.
  2. Mullan F. Seasons of survival: reflections of a physician with cancer. The New England Journal of Medicine. 1985;313(4):270-273. https://doi.org/10.1056/NEJM198507253130421.
  3. National Planning Meeting on Cancer Survivorship, October 3-5, 1986. Letter from Catherine Logan to Barbara Hoffman. August 4, 1986.
  4. National Coalition for Cancer Survivorship. NCCS Newsletter. 1988;2(1). https://cdn.cancerhistoryproject.com/media/2021/04/12170514/NCCS-2-1-Winter-1988.pdf.
  5. Mullan F. Charting the Journey: An Almanac of Practical Resources for Cancer Survivors. Mount Vernon, NY: Consumers Union; 1990.
  6. National Coalition for Cancer Survivorship. NCCS Newsletter. 1987;1(1). https://cdn.cancerhistoryproject.com/media/2021/04/12153725/NCCS-1-1-March-1987.pdf.
  7. National Coalition for Cancer Survivorship. NCCS Networker. 1998;12(3).

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Last modified: June 23, 2021

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