Armed with Knowledge

OUR COMMUNITY

Armed with Knowledge

JScreen Detroit offers affordable genetic screening for cancer, diseases and more.

STACY GITTLEMAN CONTRIBUTING WRITER JFamily, a program of the Jewish Community Center of Metropolitan Detroit in West Bloomfield, is lowering the financial barrier to those who want to learn if they are genetically predisposed to certain hereditary cancers or diseases through its new JScreen Detroit program that launched Nov. 6.

Without health insurance, costs of reproductive genetic and cancer screening can run as high as $600. But thanks to generous grants and other funding, the JScreen Detroit program will heavily subsidize the processing costs of the test kits, which are sent to JScreen’s headquarters at the Emory School of Medicine in Atlanta.

For those who have any health insurance, a $149 reproductive genetic screening will cost $18; $199 cancer screening will cost $36. The two tests, which normally cost $299, will cost $54 with the JScreen Detroit program. JFamily will work with those without health insurance to apply for financial aid.

A JScreen Detroit screening is as easy as depositing saliva into a cup provided by a mailed kit. Samples are mailed to Emory University and screened for more than 200 genetic diseases, including those commonly found in the Jewish population (Ashkenazi, Sephardic and Mizrahi), as well as other populations. Testing may reveal that you may be at risk for developing symptoms of a genetic condition. Stephanie Erez, director of young children and family engagement at the JCC, said JScreen Detroit is backed by a committee whose members are well-versed in reproductive, genetic or cancer screening due to their professional background or personal experience. In the first 18 months of the program, Erez hopes to complete screening for 500 people, and the program is spreading the word to local Jewish agencies and congregations.

“JFamily is there for the community during life’s most beautiful and most challenging times,” said Mikki Frank, JFamily senior director. “We provide support, education and connection. Providing this resource for health screening, and then putting those who did the screening in touch with additional resources after they receive those results, fits within that lane.”

Erez added that the screening is only the beginning. JFamily can be a guide to seeking additional educational and support resources for those who received positive test results, such as designating genetic counselors, she said.

Stephanie Erez

Mikki Frank

HEIGHTENED BREAST CANCER RISK

Dana Zakalik, the corporate director of the Nancy and James Grosfeld Cancer Genetics Center at Beaumont Health and an oncologist with a Dr. Dana Zakalik specialty in breast cancer and cancer genetics, said among Ashkenazi Jews, there is a one in 40 chance that a person carries either the BRCA1 or

BRCA2 mutation. When such mutations are detected, the next steps are to meet with a team of genetic counselors to learn the next steps of preventative intervention. That can mean more frequent and earlier-in-life cancer screenings, preventative surgeries and even emerging medical treatments, such as a new class of drugs called PARP inhibitors, that have dramatically progressed over the last 15 years, she said.

“(Genetic mutation testing) information not only allows us to do early detection for cancer, but also we now have better treatments that target the BRCA mutations,” Zakalik said. “So, if a woman with a BRCA mutation happens to get breast, ovarian and even pancreatic cancer, we can actually take advantage of the molecular vulnerability of that cancer due to the BRCA mutation and treat patients with this new class of drugs.

“So, genetic screening has come full circle. At first, detecting the BRCA mutations was all about detection and prevention. But we have taken it to the next level of treatment, which is very targeted, so I am very hopeful about this.”

The impetus for JScreen Detroit came from Bloomfield Hills resident Lacey Foon. After she, her mother and aunt were diagnosed with breast cancer, Foon, 34, said she does not want a single person in the Detroit Jewish community to be without the powerful, life-saving knowledge that comes with hereditary cancer screenings.

In 2014, Foon’s mother, Carol Ziecik of Bloomfield Hills, was diagnosed with breast cancer when she was in her late 50s. Ziecik decided to have a double mastectomy and the day before her surgery, discovered through genetic screening she carried the BRCA1 gene mutation although her sister, who had a different type of breast cancer years prior, did not carry the mutation.

According to the Susan Komen Foundation, among Ashkenazi Jewish men and women, about 1 in 40 have a BRCA mutation and 8-10 % of Ashkenazi Jewish women diagnosed with breast cancer in the U.S. have the gene mutation.

In 2015, undergoing her own genetic screening, Foon discovered she also carried the BRCA1 mutation. The screening results were accompanied by consultations with breast care specialists who helped her design a long-term health plan.

At the time, she was in her late 20s. Her doctors advised that she should be vigilant with cancer screenings but the chances of being diagnosed with cancer sooner than her late 40s were low. Foon planned to have a preventative double mastectomy and her ovaries removed by the age of 40, as the BRCA1 mutation increases one’s risk for ovarian cancer as well.

In 2019, she had twin girls Eloise and Phoebe. When the twins were 19 months old, and a month after a physical exam, Foon found a cancerous lump in her breast.

While this frightening diagnosis shattered the timeline Foon’s doctors provided her with, it was her understanding of her BRCA gene mutation that allowed her to quickly create an educated strategy to battle the cancer.

“Within six days of finding the lump, I was in the oncologist’s office, making a plan,” Foon said. “Yes, it was unfortunate that I knew I carried the gene mutation, was diligently completing cancer screenings, and still got cancer earlier than I expected. However, the fact that I knew I had the mutation and knew this was something to look out for was instrumental in my early detection. The education I received from the time I learned I carried the mutation was instrumental in knowing which medical professionals I

PHOTOS COURTESY OF JFAMILY continued on page 16

Mikki Frank, senior director Jfamily; Lacey Foon, chair, JScreen Detroit Committee; Rachael Gerstein, JScreen Detroit Coordinator; and Stephanie Erez, Jfamily director.

OUR COMMUNITY

continued from page 15

would go to and what to do in the worst-case scenario. It was powerful to have a plan within less than a week of my diagnosis, whereas for others it may take weeks to even be seen by a specialist to receive a diagnosis.”

Foon had a double mastectomy in December 2020 and began chemotherapy later that month. Now, like her mother, she is cancer-free.

She emphasized that the public should not think that genetic testing should be limited to those concerned about breast cancer.

“JScreen tests for 60 hereditary cancer gene mutations and 200 genetic diseases that are common to Ashkenazi Jews,” said Foon. “So, this is not just about the (BRCA1/2) gene. From screening for cancers and other diseases to reproductive gene mutations for those who are planning a family, there are now hundreds of life-saving opportunities that are now available to our Detroit Jewish community with JScreen Detroit.”

Ellyn Davidson is a mother of three and a 14-year cancer survivor. She learned she had inherited the BRCA mutation only at the time she was diagnosed with breast cancer at age 36. She is a former board member and president of the national organization Facing Our Risk of Cancer (FORCE), a support organization for people facing hereditary cancers. She said she is pleased that JScreen Detroit will not only raise the awareness about genetic screening but will also lower the financial barriers, as genetic screening is often not covered by health insurance.

“This powerful program is going to save lives, said Davidson, CEO of Brogan & Partners, which is financially contributing to offset JScreen costs. “I did not have an awareness of my (BRCA) genetic mutation before I was diagnosed with cancer, but if I did, there would have been things I could have done to prevent that diagnosis. Knowledge is power. That’s the message to drive home about cancer screening. It is best to understand what your options.”

Katie Rosen and Matt Kurzmann and son Brock Ellyn Davidson

JOHN HARDWICK

FAMILY PLANNING

JScreen can also be essential for couples wishing to begin a family.

Thanks to two successful in vitro fertilization (IVF) pregnancies, Katie Rosen, 34, and her husband, Matt Kurzmann, 31, have two healthy sons, 2 years and 6 months. The Bloomfield Hills couple come from large families with no known hereditary diseases. Through JScreen’s growing testing panel of over 226 mutations, they learned that they both carried a mutation for two genetic defects and were at risk of passing them along to a child, including a rare but potentially fatal genetic disorder called RAPSYN. Their chances of having a child with one or both genetic diseases is 50%.

Empowered with that information, Rosen and Kurzmann decided to have their children through IVF with preimplantation genetic testing — a complex, multi-stage procedure to identify viable embryos safe and suitable for implanting (or freezing for future use). Through this process, they learned that many of their embryos tested positive for genetic mutations that could have led to severe birth defects.

“Without such a comprehensive genetic screening panel such as the one JScreen provides, it would have been a long, painful process to get pregnant,” said Rosen, a urologist. “For couples wishing to plan a family, JScreen testing spares a lot of heartache and time. And because RAPSYN is very rare, we wouldn’t have even known we had this mutation if we did not get testing through JScreen. The program’s testing panel is far more comprehensive compared to what you would get at your doctor’s office.”

JScreen Detroit is funded by a $40,000 grant from the Detroit Medical Center Foundation and additional generous funding from the Lacey Foon Family Fund. To apply for screening, go to https://jfamily. jccdet.org/jscreen.

Lacey and Elliot Foon and daughters Eloise and Phoebe

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