Genetics

Genetic Counseling and Testing: The Insurance Dilemma

‘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.

We welcome anyone with questions about genetic counseling or testing, or their family history, to contact our clinical team at 866.474.2774 for free, individualized support as part of our Genetics for Life program.

New York Times Article Addresses Key Genetics Questions For Jewish Women

Today’s New York Times article outlining a proposed population-wide BRCA screening program in Israel notes Sharsheret’s work in genetics as part of a “campaign to raise awareness about the genetic susceptibility to breast and ovarian cancer among Ashkenazi Jews.”  Why have we undertaken to raise awareness about BRCA mutations as part of our Genetics for Life program?  This statistic speaks for itself: One in forty individuals of Ashkenazi Jewish ancestry carries a BRCA mutation, greatly predisposing Jewish families to breast cancer, ovarian cancer, and related cancers.

The idea of a population-wide screening program for every Ashkenazi Jew has been discussed recently in the American medical community, but more recently in the Israeli medical community as well. As the article notes, many advocate for this type of public health program because of its potential to save lives. Alternatively, many are opposed because of the psychosocial concerns such a screening program could provoke.

Opinions aside, as a genetic counselor who works with Jewish families at increased risk for hereditary breast cancer and ovarian cancer, I know firsthand that family communication and the psychosocial implications of genetic testing can be emotionally charged. The discussion between Tamar Modiano and her daughters referenced in the article about the timing and implications of genetic testing is a common one. This is why genetic counseling is vital. Genetic testing and interpretation is complex, and the information does not stand in a vacuum.  It can affect individuals and families in a comprehensive way - medically, psychosocially, and financially.  
 
As we approach the holidays of Chanukah and Thanksgiving, consider using this time with family to “Have the Talk” about medical history with your loved ones.  I welcome anyone with questions about genetic counseling or testing, or their family history, to contact Sharsheret for free, individualized support as part of our Genetics for Life program.  The program includes a confidential hotline, family conference calls, a peer support network to connect women one-on-one with others who are at increased risk for hereditary breast cancer and ovarian cancer, and health seminars presented nationwide to educate women and men about the importance of understanding family medical history as it relates to their own health. For more information and a copy of our booklet, “Your Jewish Genes: Hereditary Breast Cancer and Ovarian Cancer,” please call us toll-free at 866.474.2774 or live chat with us online at www.sharsheret.org.

Update from the National Society of Genetic Counselors Conference

Cancer gene panels were a hot topic at the recent National Society of Genetic Counselors conference in Anaheim, California. The annual educational conference is a chance for genetic counselors to learn about the latest developments in the field, discuss these developments as they relate to genetic counseling, how they affect our patients, and how they are integrated into clinical practice

The Sephardi Question

We know that 1 in 40 Ashkenazi Jews carry a BRCA gene mutation that increases the risk of developing breast cancer by approximately 80% and ovarian cancer by approximately 40%. However, approximately 25% of the world Jewish population is not Ashkenazi, and begs the question: What does this statistic mean for the Sephardi population?

Recent studies on the subject seem to indicate that it means more than the scientific community originally thought. In the past decade, stories of young Hispanic women developing the kind of aggressive breast cancer associated with a BRCA gene mutation commonly found in Ashkenazi women popped up around the Southwestern United States. It turned out that these women were actually descendants of Sephardi Jews (defined in this instance as Jews with Spanish and Portuguese ancestry, but the term is often used more broadly to include Jews of Middle Eastern decent as well), who were exiled to the United States and Mexico during the Spanish Inquisition. This story led genetic counselors around the country and in Israel to begin seeking answers to the question: Are Sephardi Jews also at high risk of developing BRCA gene mutations?

There isn’t a concrete answer to this question yet.  There is a limited pool of Sephardi women sampled in scientific studies on BRCA gene mutations. However, a study on the genetics of different Jewish geographic groups conducted by Dr. Harry Ostrer, a professor of genetics at the Albert Einstein College of Medicine, has demonstrated that all Jews are likely genetically related.  Additionally, studies conducted in Israel have revealed two unique mutations in the BRCA genes that are found only in Sephardim, one of which was found in women who immigrated to Israel from Iraq, Yemen, Iran and Afghanistan, and the other was found in a study conducted by Dr. Michael Sagi on ‘pure’ Sephardi Jewish women from Spain and Portugal. Out of the 177 total women sampled in Dr. Sagi’s study, approximately 1 out of every 30 was found to have a mutation in the BRCA gene.

This emerging research suggests that Sephardi women may be at high risk of developing hereditary breast cancer and ovarian cancer, but more comprehensive research is needed. We will continue to follow this research and keep the Sharsheret community informed of any new developments. If you have questions regarding your personal family history or risk of hereditary cancer, click here to contact our genetic counselor Danielle Singer.

Supreme Court Gene Patent Decision: What It Means For You

Last week, the US Supreme Court ruled on a significant gene patenting case.  The issue before the Court was whether or not a company’s patents on the BRCA1 and BRCA2 genes could be upheld. The landmark ruling states that a gene is a naturally occurring product of nature, and therefore cannot be patented. The Supreme Court’s ruling has important implications for clinicians, cancer patients, and individuals who are at higher risk of a BRCA mutation than the average population either by personal or family history. Many say that the Court’s ruling will increase access to genetic testing by eliminating the monopoly on the test, which will thereby reduce the cost of testing significantly and allow for consumer choice.  For many years, the American College of Medical Genetics has asserted that gene patents “stand firmly in the way of good patient care, interfere with informed decision-making by patients, impede training of the next generation of lab professionals and restrict the flow of information that is critical to advancing medical knowledge and better medical care accessible to all.”  Therefore, some anticipate that this decision will better enable appropriate and more affordable testing, particularly for those who are uninsured or underinsured. 
 
Carrie Horton, MS, CGC
Director of Genetic Counseling
West Clinic
 
Brad Somer, MD
Medical Oncology
West Clinic