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Grant to improve access to cancer-related genetic testing, counseling

Two Female Researchers Working in Lab

May 19, 2022

Cancer disparities plague our region. The Center for Genetic Services and Health Equity (CGSHE) received a 2022 grant award from the Health Forward Foundation to advance the Center’s efforts to address access to cancer-related genetic testing and counseling, with the goal of improving health equity.

Around 10 to 15% of cancers are the result of an ‘inherited’ cancer syndrome. Individuals do not inherit cancer itself, instead they inherit an elevated risk of developing cancer. African Americans and Latinos carry a disproportionate burden of elevated risk for some cancers (for example, aggressive, young-onset breast cancer) and often encounter barriers to screening. For the most part, these cancers could be prevented or detected at an earlier stage. This may involve more frequent or earlier screenings, like colonoscopies and mammograms, compared to the general population. It may also include preventive surgeries, such as preventive (prophylactic) mastectomies. By intervening before a cancer diagnosis with genetic testing and counseling, researchers may be able to address cancer health disparities among these and other populations.

“When it comes to cancer, early detection and prevention saves lives. Efforts to close the gap in access to cancer genetic testing and addressing cancer-related health disparities in our region are critical,” said Nikki Nollen, PhD, co-leader of The University of Kansas Cancer Center’s Cancer Prevention and Control research program.

Beginning in 2016, Andrew Godwin, PhD, deputy director of the cancer center and director of the Kansas Institute for Precision Medicine, sought to provide free genetic counseling and testing to medically underserved, uninsured and minority populations in the Kansas City metropolitan area who have a personal or family history of cancer.

“Results from our focus groups with Latino and Black communities showed there was limited awareness, knowledge, access to providers and linguistically and culturally tailored resources. Following these focus groups there was clearly an interest to find out more,” said Crystal Lumpkins, PhD, a member of the cancer center and the director of Faith Works Connecting for a Healthy Community.

With the help of Robert Simari, MD, executive vice chancellor of the University of Kansas Medical Center, Dr. Godwin began working with a local family foundation to obtain philanthropic donations to support early initiatives as part of his developing precision medicine efforts, including free genetic counseling and testing.

With funding in hand, Dr. Godwin partnered with experts at the University of Kansas Medical Center who had experience working with low income and racial/ethnic minority communities in the region. This team consists of Mariana Ramirez, Director, Tresza Hutcheson, PhD, and Monica Fracachan, MD (JUNTOS Center for Advancing Latino Health), Dr. Lumpkins and Evelyn Cooper, BSN, RN (Faith Works), Dr. Nollen (Population Health), Hope Krebill, MSW, BSN, RN (Executive Director, Masonic Cancer Alliance), Jennifer Klemp, PhD, MPH, MA (Internal Medicine), Alisdair Philp, PhD, and Katie Nelson, MA, CGC (genetic counselors with The University of Kansas Health System), and community partners including Karole Bradford (Kansas City Medical Society Foundation) and Pamela Bean (University Health).

CGSHE launched in 2020, when the KC CARE Health Center (Craig Dietz, DO, and Rebecca Anderson, MSW) agreed to partner. Their role was to help facilitate patient referrals to the genetic counseling service, as well as accept new patients who need primary care services along with genetic counseling.

“Thanks to our long-standing relationship with KC CARE and community partners, we have reached hundreds of Spanish and English-speaking Latinos with education about genetic testing and services for those who are at risk,” said Ramirez.

An exciting component of the program is the use of telehealth to provide genetic counseling. Dr. Hutcheson and our collaborating board-certified genetic counselors manage patient visits, referrals, and follow-up in collaboration with KC CARE. The support of the KC CARE’s Chief Medical Officer, Dr. Craig Dietz was essential in advancing the Center’s mission.

“The mission of our Center is to provide genetic services and cancer screening for individuals and family members who are at higher risk for inherited cancer syndromes and who otherwise do not have access to these services”, said Dr. Godwin. “Without KC CARE and our other community partners we would not have been able to start impacting these underserved populations”.

The CGSHE team implemented trainings, sustainable workflows using the clinic’s electronic health record, and developed referral mechanism to navigate individuals for follow-up care.

“It will take efforts of multiple organizations to improve health equity. This Center is one example of an innovative solution to reach individuals at locations where they seek care to address cancer health disparities,” said Krebill.

The Health Forward Foundation award, submitted on behalf of the CGSHE, will provide partial support for a community health worker, a community health advisor, a community health educator, and a clinical manager, as well as funds to promote these opportunities. Matching philanthropic support from the Kansas Institute for Precision Medicine and the Sean D. Biggs Memorial Foundation will continue to support access to free genetic counseling and testing.

About Health Forward Foundation
Health Forward Foundation is supporting and building inclusive, powerful, and healthy communities by prioritizing people who experience the greatest injustices in health outcomes. Through leadership, advocacy, and resources, they are championing an equitable future that will serve us all. Since the organization began grantmaking in 2005, Health Forward has awarded approximately $342 million to nonprofit organizations addressing community health needs.

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