Monday, May 29th, 2017

Fowler family ensures young adults with cancer diagnosis get specialized care

By CAROLINE R. MERK

Survivorship rates for childhood cancers are very high, and great strides have been made in adult cancer survival rates. However, other facts are sobering. Outcomes for adolescents and young adults with cancer — the AYA community — are no better than they were in 1975, according to Dr. John Letterio, professor of pediatrics at CWRU and chief of the division of pediatric hematology/oncology at UH RBCH. For these people, between the ages of 15 and 30, one out of 210 will get cancer. “We have to do better for patients in this demographic,” said Dr. Letterio.

Some of the causes for the stagnant survival rate include delayed diagnoses; biological differences of cancer in young adults versus older adults; less participation in clinical trials, and the fact that young adults are more likely to be uninsured. To improve the outcomes, Dr. Letterio says there is a need to enroll more adolescents in clinical trials, and to expand access to promising new treatments.

Dr. Letterio has taken on the chairmanship of the new and groundbreaking Angie Fowler Adolescent & Young Adult Cancer Institute at University Hospitals Rainbow Babies & Children’s Hospital. The Institute’s benefactors, Char and Chuck Fowler, wanted to improve the experiences and outcomes for adolescents and young adults with cancer after losing their teenage daughter, Angie, to melanoma in 1983. The Angie Fowler Adolescent & Young Adult Cancer Institute was created, “to honor our daughter,” said the couple. Situated on the top three floors of Rainbow, it opened to patients last April. “What we have here is unique,” said Dr. Letterio, “with a different model of care than other children’s hospitals.” Elsewhere, at best, there may be a dedicated space or room for this age group, which is often caught between pediatric and adult oncology.

The Angie Fowler Institute has age-appropriate outpatient and dedicated inpatient facilities. The eighth floor is used for outpatient services, and the seventh floor will have 30 private inpatient rooms, projected for completion in 2016. A challenge grant of $5 million from an anonymous donor matches gifts of a minimum of $25,000 toward that goal.

“This is a life-affirming space,” said Dr. Letterio, “where adolescents and young adults can be treated in the most comfortable environment you can create and be able to commune with nature.” By that, he refers to Angie’s Garden, on the rooftop of Rainbow’s ninth floor. It is a magical place. The lovely, colorful and imaginative outdoor space has multiple seating areas, including one under a rainbow-hued canopy. A sense of peace and respite is enhanced by the greenery and a water garden with bird and cricket sounds. Whimsical features abound, like a moving apple tree sculpture and a giant kaleidoscope.

The reception area of the Angie Fowler Institute is on the eighth floor. A long curved Welcome Wall is illuminated from within with ever-changing neon colors. It gives the illusion of being underwater and is mesmerizing to watch. To meet the psycho-social needs of this age group, a bright, spacious and very cool teen lounge was created. Large windows make the space feel open and unconfined. Decorated in blues, purple and orange, the lounge is furnished with comfortable chairs, ottomans and cozy window seats. There is an interactive touch screen wall for playing games and watching movies. At one end of the lounge is a circular glass room, called Grant’s Place, which can be closed off for privacy.

The Fowlers’ quest to make a difference began long ago. In 2007, they gave $1 million to UH RBCH to create the first endowed chair in AYA oncology, The Angie Fowler Chair, held by pediatric oncologist, Dr. Yousif Matloub. Four years later, the Fowlers made a $17.5 million commitment along with their daughters and sons-in-law, Chann and Ed Spellman and Holley and Rob Martens, to create the Angie Fowler Adolescent & Young Adult Cancer Institute, which is fully integrated with University Hospitals Seidman Cancer Center and the National Cancer Institute-designated Case Comprehensive Cancer Center (CCC). The NCI designation has been given to only 41 centers across the country. Case CCC is a collaboration between CWRU, Cleveland Clinic and UH Seidman Cancer Center and currently has nine areas of focus. The Fowlers’ investment will advance efforts to make AYA cancer another priority. An additional pledge of $6.7 million went to support a faculty position, filled by Dr. Meg Gerstenblith, at CWRU in the department of dermatology, specifically looking at melanoma.

The Angie Fowler Adolescent & Young Adult Cancer Institute is already a destination center and national focal point for AYA oncology research and treatment. For more information, visit rainbow.org.

 

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