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Jill Stopfer, an associate director of genetic counseling at Dana-Farber Cancer Institute in Boston, says Black Americans and other medically marginalized people may find some healthcare institutions intimidating and unwelcoming.
“Being diagnosed is a scary moment, and your information may be coming at you in waiting rooms and through literature filled with images of white people,” Stopfer explains. “No one on your health team may look like you, and your diagnosis may be the first time you’ve seen a gynecologist in years, so it’s not as if you have a trusting relationship.”
Black Americans have long distrusted the entire healthcare system, says Renee A. Cowan, MD, MPH, a Black gynecologic oncologist at Woman’s Hospital in Baton Rouge, Louisiana.
“It’s in our DNA,” Dr. Cowan says. “Black Americans are always viscerally aware that they were medically mistreated historically and, seeing today’s healthcare disparities, still are.” Many people may fear that genetic testing could be used against them in some way, she adds.
Tools for Decision-Making
Ovarian cancer testing disparities are particularly disturbing, Cowan says, because non-Hispanic Black Americans have one of the lowest ovarian cancer rates, compared with other racial and ethnic groups, but the worst five-year survival rate for both early- and late-stage disease.
“Yet, some studies have shown that with equal use of the expert care and tailored treatments that genetic testing allows, survival difference dissipates,” says Cowan. For Black Americans, she says that accessing that care involves knowledge, self-advocacy, and social support. Here’s how to take those steps.
1. Find the Right Support
To navigate a cancer diagnosis and the healthcare system, “It’s often very important for people to have support from people in their own communities, people to whom they can relate,” says Sarah DeFeo, chief program officer of the nonprofit Ovarian Cancer Research Alliance (OCRA).
That’s why OCRA’s Woman to Woman program creates peer matches based on “whatever criteria are most important to those signing up,” DeFeo says. This includes racial or ethnic background, as well as experiences with genetic testing.
Community-specific support groups can also be found at Facing Our Risk of Cancer Empowered (FORCE), a nonprofit helping people with hereditary cancer make informed medical decisions.
2. Partner with a Board-Certified Gynecologic Oncologist
Studies repeatedly show that women with ovarian cancer live longer and enjoy a better quality of life when their doctor is a board-certified gynecologic oncologist, rather than a general gynecologist or general surgeon.
“We’re expertly skilled and up to date about these cancers and genetic testing’s benefits,” Ratner says. “And we partner with patients, taking the time and making sure that they’re comfortable with genetic testing and counseling being part of their education.”
Gynecologic oncologists, and the institutions with which they’re affiliated, may also help with barriers to genetic testing, which can help close patients’ knowledge gaps and ensure that tests and counseling are accessible and affordable.
Find a board-certified gynecologic oncologist by asking your doctor for a referral, or use the Foundation for Women’s Cancer search tool.
3. Speak With a CGC
These trained professionals explain — in person, by phone, or by video — the benefits, costs, and limitations of genetic testing. They’ll usually coordinate paperwork, order the test, collect testing samples, and check with insurers about covering costs or make low- or no-cost testing available.
You can find a CGC with the National Society of Genetic Counselors search tool, which includes telehealth counseling. JScreen, a national program from Emory University in Atlanta, provides low-cost at-home genetic counseling and testing with financial assistance.
Other sources include FORCE‘s toll-free helpline — 1-866-288-RISK (7475), ext. 704 — and Peer Navigation Program, which matches people with volunteers who have undergone genetic counseling.
4. Cost Doesn’t Need to Be an Impenetrable Barrier
OCRA is working with Color for All to provide free at-home genetic testing kits to qualified applicants, meaning people with ovarian, fallopian tube, or primary peritoneal cancer. Like many genetic testing companies, Color for All has genetic counselors on staff to give post-test support.
Many labs also offer financial assistance and low- or no-cost testing programs.
For assistance with these and other challenges, you can contact Virginia-based Patient Advocate Foundation (1-800-532-5274, option 2), a nonprofit providing free case management services to Americans with chronic, life-threatening, and debilitating illnesses.
Talking About Genetic Testing Saves Lives
There’s no one-size-fits-all solution when it comes to talking with relatives about genetic testing. But, culturally sensitive resources are available, so no one needs to do this alone. Genetic counselors, for example, can help determine who to contact about test results.
FORCE and the National Society of Genetic Counselors offer a guide (in English or Spanish) to help parents discuss hereditary cancer with their children.
The Centers for Disease Control and Prevention is a trove of culturally diverse resources that you can access regardless of your location, including interactive animated “Let’s Talk” videos, videos of people discussing hereditary breast and ovarian cancer in their families, and StoryCenter videos focused on genetic testing and familial cancer risks. The subject may be breast cancer, but these resources can also work for talking about ovarian, fallopian tube, and primary peritoneal cancer.
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