Pittsburgh's Gilda's Club leaves national group over diagnostic tool

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The Pittsburgh branch of Gilda's Club today is changing its name to Our Clubhouse and severing ties with its parent organization because it disagrees with a mandate that a medical diagnostic tool be offered to patients beginning in 2015.

In recent years, the Gilda's Club franchise has been in the news because some local affiliates have changed their names to Cancer Support Community, leading some people to believe this decision was based upon the fading celebrity of the club's namesake, Gilda Radner, the "Saturday Night Live" comedian who died of ovarian cancer in 1989.

But according to Carol Lennon, executive director of the local Gilda's Club in the Strip District, the decision to change the club's name stems from a policy disagreement between the parent group and the Pittsburgh chapter.

Ms. Lennon said that Cancer Support Community has begun to urge -- and next year will require -- all Gilda's Club affiliates to offer patients the opportunity to participate in "distress screening," a Web-based medical diagnostic tool. Ms. Lennon said the distress screening is more appropriately offered in cancer hospitals in the region, as it currently is, and not in the home-like, supportive, non-institutional environment her organization offers patients.

The product website states that the distress screening "provides the patient with a Personal Support Care Plan with information and referrals for support services," as well as other information that help hospital staff determine how to respond to a patient's emotional needs.

"We are here to provide social and emotional support, and this should be the one place where individuals can come as they are, without any requirements," said Ms. Lennon, who also said that Gilda's Club provides its services free and does not solicit to its members.

"I think it's important to do this research," said Ms. Lennon. She said the club has been involved in a research project at University of Pittsburgh, but it's voluntary. "I don't want to be in a situation where [our members are] mandated to be screened."

Linda House, spokeswoman for the Washington, D.C.-based Cancer Support Community, said she could not comment on the Pittsburgh affiliate's plans to separate from her organization because she had only learned of it Monday from a reporter.

However, she emphasized that the screenings are "the national standard for quality of care" and that patients voluntarily decide whether to participate. Among the organizations considering it a standard of care were the American College of Surgeons Commission on Cancer, the American Society for Clinical Oncology, the National Comprehensive Cancer Network, Community Oncology Alliance and the Institute of Medicine.

"The fact we expect our affiliates to offer this to patients, I don't think is an unnecessary burden," Ms. House said. "Patients who walk through the doors of our affiliates should be offered the standard of care and that's what we're doing with distress screening.

"Study after study after study have shown the benefits to patients of distress screening, intervention and follow up," she said.

Cancer Support Community, which owns the Gilda's Club brand, also owns Patient Planning Services Inc. The venture is the result of a 2009 merger between Gilda's Club Worldwide and another support group called The Wellness Community.

Although Cancer Support Community is a nonprofit organization, Patient Planning Services Inc. is a for-profit company.

Elizabeth Marcu, one of the founders of the Pittsburgh Gilda's Club, said that the club's original vision was to provide desperately needed emotional support for cancer patients in the region.

"We have such tremendous medical care and research in the Pittsburgh area, but there wasn't anything that could assist people in the terrible emotional swings that one goes through when you're dealing with cancer," said Ms. Marcu. In addition, she and other founders wanted the Pittsburgh chapter to provide support for family members and friends of cancer patients.

The local club has about 2,000 members and seven full-time employees. Ms. Lennon estimated 13,000 annual member visits to the club.

She said the club's decision to cut ties with Cancer Support Community was not taken lightly and took 21/2 years of careful consideration by the board. "Our strategic direction moving forward is providing additional support and resources to families, especially families with younger children at home."

In past years the club has paid $5,000 to Cancer Support Community for the right to use the Gilda's Club brand, money which comes exclusively from board member donations. Ms. Lennon said that all other funds raised have stayed in Pittsburgh, and that would remain the same after Gilda's Club becomes Our Clubhouse.

The hardest part will be leaving behind the Gilda's Club name, which the club does not own, Ms. Lennon said. "I hope that our members will understand."

Ms. Lennon said that Gilda Radner and her dream of emotional support for cancer patients will continue to be part of the culture at Our Clubhouse.

"Gilda's pictures will stay here," she said. "We want to make her proud."

Brett Sholtis; bsholtis@post-gazette.com; 412-263-1581 and Michael A. Fuoco; mfuoco@post-gazette.com or 412-263-1968

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