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‘Will my insurance cover genetic counseling and testing? What do I do if coverage is denied?’
Boy, if I had a penny for every time I heard these questions…
It is well established that 1 in 40 individuals of Ashkenazi Jewish ancestry carries a BRCA mutation, predisposing them to breast cancer and ovarian cancer. When I speak with the women and families of Sharsheret about their family history of cancer, one of their most common concerns is insurance coverage of genetic counseling and testing. Insurance coverage and financial considerations are a valid concern for many women, and simply a reality in today’s day and age.
Most insurance companies set their criteria for coverage based on various established medical recommendations for who should have genetic testing. These criteria are designed to ensure that only those with a “strong” family history or those for whom genetic testing is appropriate are covered. However, it can be frustrating, especially as an Ashkenazi Jewish individual with increased risk, to be denied coverage. Genetic counseling itself is typically covered and billed as a medical office visit, however every center bills for genetic counseling services differently. If you are unsure, I recommend checking with the genetic counselor you meet with and your insurance company to ensure that counseling services are covered. Coverage of genetic testing, however, varies. Every insurance company, including Medicare, has its own criteria and will vary from person to person based on their personal and family cancer history. Additionally, coverage of genetic testing will likely change over time due to new health care laws. Each situation is truly unique, and so it may not always be possible to know before one meets with a genetic counselor if testing will be covered.
However, clinical cancer genetic counselors can assist you with the insurance coverage process. Genetic counselors working in a hospital or medical center setting can assist you with appealing for coverage or working with the laboratory (some have financial assistance programs, although not all.) The genetic testing process can be complex and it is important to meet with a genetic counselor who has the experience and knowledge to handle these concerns.
I welcome anyone with questions about genetic counseling or testing, or their family history, to contact me at email@example.com or 866.474.2774 for free, individualized support as part of our Genetics for Life program.
In the year 175 B.C.E., it was forbidden to practice Judaism openly. The Jewish people went to great lengths to secretly perform rituals, often times hidden in caves. People did not speak openly about their Jewish identities, that is, until a small militia of Maccabees stood up and fought the Greek army and won. That’s the two sentence history of Chanukah.
Because of the example set by the Maccabees, we are long removed from the caves and openly perform the rituals. We light our menorahs in the front windows of our homes. There are public lightings all across the country. There is tremendous media coverage of the holiday of Chanukah. Because of the strength of courageous and caring people, the course of history has changed and we can stand up and let our voices be heard.
Now for another short history lesson….For generations, it was taboo to talk about cancer in the Jewish community. Family members did not openly share their medical histories with one another. People went to great lengths to hide their diagnoses. It took remarkable efforts to undergo surgery and treatment undetected by the larger community. People were worried about the repercussions of speaking openly about a cancer diagnosis or increased genetic risk of being diagnosed with cancer.
Because of Sharsheret Jewish women and their families who are affected by a cancer diagnosis now have a community that offers personalized support from other women further down the road who understand what they may be going through.
Because of Sharsheret the Jewish community has access to vital information about hereditary breast and ovarian cancers. We hear from many women who engage in open dialogue with their loved ones about their increased family risks.
Because of Sharsheret the media is talking about the increased risk of carrying the BRCA mutation in individuals of Ashkenazi Jewish descent. Sharsheret has often been featured in the media shining a spotlight on the unique issues of young Jewish women facing cancer.
Because of Sharsheret women and men, teens and adults, are raising their voices and engaging in conversations and participating in events that empower us as a community to take action and protect our future.
And once again…Because of the strength of courageous and caring people, the course of history has changed and we can stand up and let our voices be heard.
“Because of Sharsheret, a woman living with a rare form of hereditary breast cancer finds a new friend who shares her concerns about talking to her teenage daughters. Because of Sharsheret, a doctor connects his patients with resources that speak to her concerns as a Jewish woman. Because of Sharsheret, a research scientist prepares to study the impact of cancer among Jews of Ashkenazi descent. And because of Sharsheret, a student on campus discovers his family’s strong history of cancer and decides to take action.” – Excerpt From “Because Of Sharsheret” Impact Report.
Giving Tuesday, an annual day for giving back and sharing the ways you give, is just two weeks away - Tuesday, December 3rd! We’re celebrating Giving Tuesday by sharing the ways that Sharsheret’s work has impacted the Jewish and cancer communities. The above excerpt from our new Impact Report highlights some of the ways that Sharsheret has shaped a field of culturally-relevant training and resources, enhanced the quality of life of those facing serious illness, opened up vital conversations about cancer that were once deemed taboo, and inspired community-wide and national action.
On Tuesday, December 3rd, we will share the entire Impact Report with you – our clients and our friends. Your continued and generous support enables us to accomplish all that we have. We know that you, too, will take pride in all that has changed because of Sharsheret…because of you.
Join our Giving Tuesday campaign and share how Sharsheret has made a difference in your life and what you plan to do to give back in the comments section below, on our Facebook page, or on Twitter using the hashtag #becauseofsharsheret.
Sharsheret’s new video series, “One Woman At A Time”, showcases the stories of ten inspiring women who have used Sharsheret’s programs. I named the series “One Woman At A Time” to honor how Sharsheret values the women involved in the organization’s national programs and services. While Sharsheret helps thousands of women, each woman feels special and receives the undivided attention of Sharsheret’s incredible staff.
Initially, I was concerned about finding ten women who would be willing to discuss their cancer journeys on camera. Sharsheret staff members reached out to some of their peer supporters and, with their permission, connected me with women who wanted to learn more about the project. When I explained what I needed and answered their questions, all ten women said, “I will do whatever Sharsheret needs. I want to give back.”
During the filming, there were only three of us on set - the interviewee, the cameraperson, and me. In this safe space, the conversations were emotional and very honest. These remarkable women shared their experiences so others could understand how vital Sharsheret was to them and their families. “If it weren’t for Sharsheret…” became the shared theme.
My hope is that you will watch these films and appreciate all that Sharsheret offers “One Woman At A Time”. Perhaps you will also be touched by the humanity shared, as I was, and who better to convey that essence than these ten wonderful, articulate, beautiful women.
This past year, I was diagnosed with early stage breast cancer. My team of doctors prescribed chemotherapy and a dizzying array of tests and surgeries. As of this writing, my last surgery occurred a little over four months ago. There are moments when I think about what I’ve just been through and am stunned by the intensity of this last year and the fact that I am still here.
Though being sick is terrifying and at many times, infantilizing, cancer is a profound teacher. I’ve learned a great deal this past year, especially, that in addition to having a physical immune system, I also have a spiritual one. My spiritual care evolved in many ways. My brother and cousin flew out here to be with me and one of our rabbinic interns came to my apartment to sound the shofar as I wasn’t able to attend the High Holiday services last year, acts of kindness which I will never, ever forget. Many amazing friends from my synagogue community and from other parts of my life reached out and helped me with meals and with taking me to treatment appointments and holding my hand during chemo. Sharsheret was a huge part of strengthening my spiritual immune system. From pairing me with a peer supporter, connecting me to their staff genetic counselor who patiently explained complicated issues relevant to my being a BRCA carrier, to sending me a pillow so that I could rest more comfortably after surgery, the people at Sharsheret understood what I was going through.
As I continue my journey of transitioning from being a cancer patient to being a cancer survivor, it has become more and more important for me to pay it forward and help the next person who is diagnosed with this disease to navigate the world of coping with a life threatening disease. May we all continue to go from strength to strength.
We are proud to announce that Sharsheret has received a 4-star rating from Charity Navigator for sound fiscal management and commitment to accountability and transparency. America's premier charity evaluator, Charity Navigator works to advance a more efficient and responsive philanthropic marketplace by evaluating 6,000 of America's largest charities.
"Receiving four out of a possible four stars indicates that your organization adheres to good governance and other best practices . . . and consistently executes its mission in a fiscally responsible way," wrote Ken Berger, President and CEO, Charity Navigator. "Approximately a quarter of the charities we evaluate have received our highest rating, indicating that Sharsheret outperforms most other charities in America. This 'exceptional' designation from Charity Navigator differentiates Sharsheret from its peers and demonstrates to the public it is worthy of their trust."
Thanks to all of you, our supporters, whose dedication has played a vital role in Sharsheret's growth. Our Board of Directors and staff will continue to work diligently to ensure Sharsheret exceeds expectations and merits your continued trust and commitment.
Click here to renew your support today.
The holiday of Shavuot celebrates the giving of the Torah to the Jewish people at Mount Sinai. It is recorded that the people heard thunder and lightning, and clouds and smoke filled the air. The experience was overbearing to the senses. The children of Israel shook with fear. Ever have one of those days?
I imagine that those of you who have heard the words “You are BRCA positive,” or “You have cancer,” or “The cancer has come back,” experienced an overwhelming burden to your senses. Perhaps you, too, shook with fear. The ensuing thoughts that recur after hearing these words can be more agonizing than the realities. We are often overachievers when it comes to imagining worse case scenarios.
While we can’t stop intrusive thoughts from entering our lives, we can respond to the thoughts in a way that feels calming and empowering. When an intrusive thought comes my way, I imagine myself putting my arm around it, similar to the way that I would put my arm around someone’s shoulder, and I “say” to the thought: “I knew you were coming. I was expecting you. You can hang out, but I have things to do.” I find the more I welcome the thought, the less it overcomes me.
One woman in Sharsheret’s Embrace group for women living with advanced breast cancer shared, “I know that I feel more anxious when I’m waiting for test results or going to appointments. Those days I take the anxiety with me. All the days in between belong to me and the anxiety needs to find someone else to hang out with.” These wise words can calm the thunder and comfort the soul.
Finding a Mother’s Day gift for my wife Aviva is impossible. Let’s just say for her birthday in March, she got a sponge cake…that she made herself. The one reasonable gift I could get her is flowers, but she says she dislikes them because they’re expensive, die quickly, and make a mess when the petals fall off.
It was surprising to me, then, when Aviva and her sister Tova decided to sell flowers for Mother’s Day to benefit Sharsheret. Their mother passed away from breast cancer over ten years ago and they wanted to honor her memory with this sale. But why flowers, I wondered?
In their description of why they chose this fundraiser, Aviva and Tova wrote:
“As soon as Spring arrived, our mom would be outside working in the yard. We have amazing memories of helping her pluck weeds, plant perennials, and setting up the sprinkler perfectly to make sure each flower got watered. One year, we bought her a hydrangea bush for Mother's Day and each year after we would take pride in its growth and admire its beautiful lilac flowers.”
I never knew this about Hindy. Aviva and I started dating in December of 2001. Her mom was already sick then with her second diagnosis of breast cancer. She was still active at the time, but didn’t have the energy I so often hear people speak about when they mention her. By the time the summer came along, she was at the end of her life and watering flowers was the last thing on anyone’s mind. They had a beautiful yard, but I never knew how much Hindy worked to make it that way.
Aviva has picked up those same traits. She is the gardener in our house - trimming the bushes, planting flowers, even chopping down trees. It always amazed me how dedicated she was to making our garden beautiful and I never knew how much of it was influenced by her mother.
That’s the difference, I believe, between buying flowers and growing a garden. Toiling away at the garden is hard work with great rewards. Buying flowers is the easy way out. They are beautiful, but they don’t give you the same satisfaction as working on your yard. Gardening can be frustrating and can take years to truly perfect, but in the end, it’s something you can be proud of. In essence, it’s no different from parenting. You cultivate your kids over time and as they grow, you try to mold them into good, respectful people. It’s no surprise that Aviva, the yard expert, is also an amazing mom. Hindy, her mother, was exactly the same.
In memory of their mother, Aviva and Tova aren’t just selling flowers. They are working hard to cultivate a living memory by donating a Jewel to Sharsheret. They worked hard on finding a florist, writing copy, and spreading the word about Sharsheret. These flowers were not easy to buy; they were earned and cultivated, a trait they learned from their mother. I think she’d be proud. I know I am.
To make a donation in support of Sharsheret, please visit their online fundraising page at http://bit.ly/12oVX0A. Thank you so much.
We are going to be running the Baltimore Marathon 5K on October 12th in memory of our grandmother, Ruth Merwitz. Our "Mom Mom" passed away this past January from Primary Peritoneal Cancer which has symptoms very similar to Ovarian Cancer. Mom Mom was a very warm and caring person who had a very unique way of making everyone around her feel special. Everyone loved her because she was such a joy to be around. She loved to laugh and enjoyed everything about life. She cared with such kindness and such a big and open heart and so unconditionally. She was truly an amazing person. All of us, her 8 grandchildren, thought we were her favorite because of the way she made us feel- so loved, so cared for, so special, so complete.
Being Jewish was something that was very important to Mom Mom. We always loved spending time with her having sleepovers, playing games, and going on outings. But we especially loved being with her for the Jewish Holidays. We do not think we will ever taste matzo ball soup as good as hers! Mom Mom will forever live in our hearts and we will always remember the special times we spent together.
Doing things for others is what truly made Mom Mom happy. To honor the loving person she was, we have decided to support Team Sharsheret for our Bat and Bar Mitzvah projects. We hope that we can help save lives and prevent other families from ever having to feel the pain of losing someone they love. Please consider either joining our team on October 12th or supporting us by clicking here to make a donation to Sharsheret in honor of our very special Mom Mom, Ruth Merwitz.
As she used to always tell us,
we love you to the moon and back!
Ally Merwitz and Evan Feuerman
The New York Times recently ran an article by Susan Gubar, “Living With Cancer: The Good Patient Syndrome”, that questioned the importance of being a model patient. When Susan was first diagnosed, she was agreeable, nodding politely when meeting with her doctors. She worried that if she asked too many questions, she would be unintentionally neglected or harmed by her medical team.
One woman in Sharsheret’s Embrace group for women living with advanced cancer noted that each time she went to an oncologist appointment she felt unnoticed by the office staff and her doctor. One day, she went straight to her appointment from a Brit (circumcision). She was dressed up and wearing makeup. The office staff was quite complimentary and paid her a lot of attention. Her oncologist, who typically spoke to her while reading her file, engaged in eye contact and remarked how wonderful she looked. This woman decided that from then on, she would put on some lipstick and go to her appointments well-dressed. She told the group she felt as if she was now “dating” her oncologist - she wanted to be noticed.
Many women call Sharsheret with questions following a doctor’s appointment or scans – questions that are reasonable to ask their doctor during an appointment. Yet, they are afraid to ask these questions because they don’t want to come across as untrusting. When you have concerns, you may not pick up the phone and call the doctor because you “don’t want to bother them”. You worry about being labeled a “difficult patient”. At the end of the day, it’s your body, it’s your life. Don’t be afraid to speak up and advocate for yourself because if you don’t, something serious may go unnoticed.
As we prepare for the Passover holiday, we are reminded of how the Jewish people were obedient and compliant for fear of further harm at the hands of the Egyptians. Moses was also worried about his ability to stand up to Pharaoh on behalf of the Jewish people, worried that he would make an already bad situation worse. In reality, it was only when Moses spoke up and advocated for his people that he and the Jews were set free. What would have become of the Jewish people if Moses did not stand up for them? I’m adding this question to the already established Four Questions that will be recited at my Seder as a reminder to empower myself in the pursuit of health and well-being.
© 2014 Sharsheret: Your Jewish Community Facing Breast Cancer
Sharsheret is a 501(c)(3) charitable organization ID# 13-4198529
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