NEWS

Coalition’s Growth Unites Survivorship Organizations

Donna Pillittere

This is part of an occasional series that will recall some of the stories reported 10 years ago in the News section of the Journal.

The News reported in its Jan. 3, 1990, issue that the National Coalition for Cancer Survivorship had just conducted its fourth annual meeting and had welcomed double the number of people from its previous meetings. Participants discussed whether the coalition would continue to grow at this rate and, if so, whether the coalition would be able to serve its members’ needs. Fitzhugh Mullan, M.D., president of NCCS at that time said, "the challenge is to develop an organizational structure that will keep up with the demands of a growing national movement."

And grown it has—from 25 members in 1986 at coalition inception to a network of more than 400 organizations and institutions ranging from small community-based support programs to large cancer centers, all disseminating information to tens of thousands of people. The coalition has become a nationwide network of independent organizations and individuals working in the area of cancer support, information, and advocacy.

"We’re essentially an organization of organizations rather than an organization of individual members," said Ellen Stovall, executive director of NCCS. "We’ve evolved from efforts to attract individual members who are newly diagnosed with cancer, to targeting community leaders who reach out to individuals with a focus on proliferating a patient-led model for quality cancer care."



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Ellen Stovall

 
One of the most important things NCCS does is to bring all of the patient advocacy groups together and work with them all as equal players, said Ann Kolker, executive director of the Ovarian Cancer National Alliance.

"NCCS was one of the pioneering organizations that gave patient advocacy groups like ours legitimacy," said Kolker. "All the patient groups that have been organized in their wake have benefitted enormously from the doors they have opened and the credibility they have established."

An Independent Organization

Selma Shimmel, NCCS’s vice president for program development in 1990 who now hosts a syndicated radio show for cancer survivors, said that NCCS wanted to be known as an organization that did not duplicate services of any other organization—a coalition that survivors and their families could go to for certain services that no other organization could provide.

"The NCCS has defined, or at least given a name to survivorship," said Julia Rowland, Ph.D., director of the Office of Cancer Survivorship at the National Cancer Institute. "It is all about living with your illness whether you’re cured or not."



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Dr. Julia Rowland

 
"What this coalition has tried to do is be a group that speaks for everybody," she continued. "They’re not advocating or speaking on behalf of just one type of cancer, they’re saying issues of survivorship are important to anybody with cancer, and I think this has been an important role."

And they have used this unified voice to become active on the Hill, Rowland said. "They have very firm connections now with Congress, with the NCI, and with funding organizations," she said.

But she noted that the organization has moved out of what was originally a grassroots effort into more of a powerful, traditional advocacy group, and things have become necessarily much more political. One consequence is that NCCS now has access to big dollars, either from pharmaceutical companies or lobbying groups, which people worry about.

"These associations have been critical to the organization’s own survival and mission," Rowland said. "Financial support beyond its membership fees has permitted NCCS to grow valued educational and programmatic efforts. However, the challenges to their neutrality and their ability to be independent operators are very real. While NCCS has articulated strict conflict of interest policies, they will have to be vigilant in exercising these to maintain their hard-won and deserved reputation as representatives of the voice of survivors among national policy-makers and their grass-roots constituents alike."

Looking toward the Future

Since the founding of the coalition in 1986, NCCS has worked to identify organizations and institutions with a reputation for their good work to be a source of referral for individuals in need.

"Although the legal and employment referral network has greatly expanded, we are still in need of much more help," said Stovall. "The reimbursement laws and employment laws haven’t been as friendly to cancer as we’d like." She said the need for people to seek assistance in the area of employment law and insurance law has never been greater.

"The work of the NCCS to ensure quality cancer care for all Americans suggests that we have inadequate employment and insurance laws that keep quality of care from getting to consumers in a reasonable fashion," said Stovall.

She said that one huge initiative for NCCS is to take the Institute of Medicine’s report called Ensuring Quality Cancer Care, which shows the differences in what is known and what is being applied today by health care practitioners in the care and treatment of the estimated 8 million people with a history of cancer, and make sure those recommendations get implemented across all sectors so that people regardless of their ability to access the best insurance policy have at least the same access to care.

"What this organization represents is a patient-led attitude and disposition toward dealing with cancer, a patient focus, and [it is] patient-centered," said Stovall. "What we want people to know is that the experience people have when they have cancer has value," she said.

"As there are more patient advocate groups and NCCS continues a leadership role, cancer advocacy will get stronger and more effective," said Kolker. "They have opened doors for all cancer advocacy groups and working with them, we believe they will continue to do so."



             
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