'The Angelina Jolie Effect' symposium offers inspiration, information

Original post 9/25/13, The Middletown Press

For actress, author and activist Angelina Jolie, beauty is a trademark as much as her talents on stage and screen, her relationship with Brad Pitt and the children they share and her philanthropic projects for refugees. Today she has a new distinction, known simply as the Angelina Jolie Effect - her pro-active response to the threat of breast cancer and ovarian cancer and her decision to undergo a preventive double mastectomy as well as her announced plans to have her ovaries removed.

To celebrate her decision and to educate all women and men about women's cancers, the public is invited to a symposium "The Angelina Jolie Effect: What Every Woman Should Know About Her Genetics" on Thursday, October 3 at 7 p.m. at the Jewish Community Center, 360 Amity Road, Woodbridge.

As an inspiration to encourage women to take a proactive stance on their health, Jolie had undergone BRCA gene testing and discovered she had an 87 percent risk of developing breast cancer as well as a 44 percent chance of developing ovarian cancer. Her mother, grandmother and aunt died of breast or ovarian cancer, all at a young age.

Because of her mastectomy, her risks were lowered to less than 5 percent. Her decision to go public in May 2013 opened a free flowing discussion on this sensitive topic.

A panel of medical experts from the Yale University School of Medicine will include: James J. Farrell, M.D., Director, Yale Center for Pancreatic Diseases, Associate Professor of Medicine, Section of Digestive Diseases; Erin Wysong Hofstatter, M.D., Assistant Professor of Medicine,Breast Cancer Program; Ellen T. Matloff, M.S., C.G.C., Director, Cancer Genetic Counseling,Yale Cancer Center; and Elena Ratner, M.D., Assistant Professor of Obstetrics, Gynecology, and Reproductive Sciences.
Pre-registration is required to egroves@jewishnewhaven.org or www.jewishnewhaven.org. The event is free and open to the public and the co-chairs are Beverly Levy and Judy Sklarz.

"As a cancer patient, I know the importance of genetic testing and we've matched up two likely organizations, to which I'm connected, to sponsor this program," Levy said. "Jewish organizations like Women's Philanthropy of the New Haven Jewish Federation are spreading the word about genetic testing because Jews of Eastern European decent have a higher incidence of the BRCA gene mutation than other populations. And Discovery to Cure co-sponsoring the event is a 'natural.' They are one of the most renowned research units in the world on gynecological cancers and are right here at Yale." The increased risks of BRCA gene carriers for breast (men and women), ovarian, prostate and pancreatic cancers will also be covered.

"We have come a long way from the time cancer was whispered about as the 'big C,'" Levy continued. "One hope for this symposium is to encourage women to be tested and to bring the cost of genetic testing down to make it more affordable. Women with a specific family history of gynecological cancers will face more immediate and difficult health decisions and may be able to have their insurance company cover the $3,500 price tag."

"Those of us in our 50s and 60s know someone is diagnosed with some kind of cancer all the time, many of them gynecological ones," Sklarz said. "But they don't get the recognition or the research dollars that are vital. My diagnosis of uterine cancer felt like a rite of passage, like 'This is my turn.' I wanted to be involved in this event to support Beverly and encourage ways to identify these cancers a lot earlier."

For Kate Downey Berges, a photographer from Branford, the cause is also quite personal. She will speak about the voyage she and her three sisters took when they discovered that they were BRCA 1 positive from their father's side of the family. That news hit them minutes before two of the sisters of Irish descent were diagnosed: one with breast cancer, and one with ovarian cancer. Her moving and courageous story may prompt you to examine your family history, both maternal and paternal.

Through the candidness of one of the most beautiful women in the world and her medical announcement, Angelina Jolie is truly having an effect and empowering women to be educated. A walk to raise money for all gynecological cancers is planned for Sunday, Oct. 27 on the Yale University campus, with sign-in starting at 10 a.m. at Woolsey Hall on the corners of Grove and College Streets A leisurely two mile walk, starting and ending on the Yale Commons, will focus on sight-seeing with Yale University guides, and include free parking, door prizes, snacks, fun and a great cause.

Congresswoman Rosa DeLauro, herself a 27 year ovarian cancer survivor, is the honorary chair of the walk and will cut the ribbon officially opening the walk and give some remarks.

For her part, Levy is focused on finding new ways to help recognize, treat and prevent cancer through fundraising to support research.

"It's just not good enough that doctors find cancers like my ovarian cancer by accident," she said. "It is the fifth leading cause among cancer deaths for women and there are virtually no early warning signs. While undergoing chemotherapy, I am pouring my energy into fundraising to help the doctors and researchers at Yale develop early detection screening tests so they can find cancers like mine in the early stages when they are most curable and to find more and better treatments for women who are battling gynecologic cancers. We are hoping that people will join us for this great event to help fight back against cancer and enjoy a beautiful stroll on a fall day through the Yale University campus."

Gather your family and friends, make a team and help raise money for research and testing. Go to http://DTCNewHavenWalk.kintera.org for more information. Pre-registration is encouraged.

Donations can also be sent to: Office of Development, Yale School of Medicine/Discovery to Cure Walkathon c/o Joy Carrigan, P.O. Box 7611, New Haven, CT 06519, or call: 203-415-5555
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Buy Your Tickets for ArtBra Now!

ArtBra New Haven will hold its 3rd annual live runway auction of art bras and other fine artwork on Sunday October 6, 2013, from 2:00 – 5:00PM at the Omni Hotel in New Haven, CT. Proceeds will benefit under- and uninsured patients at The Breast Center at Smilow Cancer Hospital. Doors open at 1:30, tickets are $50 and include a lavish English-style afternoon tea.

ArtBra New Haven empowers breast cancer patients to push back at the disease. This unusual take on art therapy provides a creative outlet for the emotions of cancer patients and survivors. Executive Director Gaye Hyre, herself a survivor, created the organization three years ago because “I felt the need to thank my medical team and focus on giving back to the community that was giving me so much.”

WNPR’s own Bruce Barber will return as MC/Auctioneer. The auction (both runway and silent) features bras which survivors transform into fine art objects, beautiful to boisterous, and fun to fantastical. They are vibrant celebrations of survival and “Bronx cheers” at the disease, as well as bras as objets d’art. The creations are then modeled by survivors and their supporters. Attendees can take part in the fast and furious live runway auction and bid on items in the silent gallery.

Each year ArtBra New Haven honors a person who has made a significant contribution to the breast cancer community by advocacy or research. This year, Ellen Matloff, Director of the Yale Cancer Genetics Counseling Center is being honored. Ms. Matloff prevailed as the lead plaintiff in the Molecular Pathology v. Myriad Genetics case recently before the U. S. Supreme Court, which unanimously decided to void patents on BRCA genes.

Breast cancer philanthropy gets personal - ArtBra New Haven!!

To purchase tickets, make donations, or for more information, please visit www.artbra-newhaven.org.

Click here to see the original post from Elm City Beat


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Has Myriad Learned Their Lesson?

Several papers have demonstrated that most physicians do not have the time or knowledge to offer their own genetic counseling to patients. There are documented cases of patients being harmed by these practices (1,2) and physicians who have subsequently been sued for mismanaging these patients (3). Over the past 15 years, Myriad Genetics has directly targeted clinicians with little to no background in genetics and encouraged them to offer their own genetic testing, without counseling by a trained and certified professional (1,2,4). Myriad has been widely criticized for this and other practices that have contributed to adverse events for patients and lawsuits for clinicians. Has Myriad learned their lesson? Or do they continue to put both clinicians and patients at risk? The evidence below suggests the latter.

1. PracticeAdvisor
Myriad recently released PracticeAdvisor, an e-learning program aimed at training general physicians and their staff on how to "implement a simple and effective hereditary cancer risk assessment protocol… to achieve the cancer risk assessment standard of care". Myriad’s PracticeAdvisor attempts to convey that genetic testing is a simple and straightforward process and fails to capture several key aspects of the genetic counseling process, contributing to the belief that anybody can order a “simple” genetic test and provide the patient with a “simple” answer.

2. Targeting Mammography Technicians
Recent emails circulating in the field indicate that Myriad plans to target mammography technicians as appropriate providers to order BRCA1/2 testing. These technicians likely have even less training in genetics than the physicians and nurses Myriad has targeted in the past. This is once again dangerous both for patients, who risk undergoing unnecessary surveillance and surgery or having false reassurance that their cancer risk is not elevated, as well as mammography technicians who could face legal action if the testing, results and/or management are not handled correctly.

3. Panel Testing
Myriad is now offering ‘panel’ testing that includes many genes as part of a single test, including several rare genes (5). If mistakes were made when Myriad was offering genetic testing for BRCA1 and BRCA2 alone, imagine what will happen when physicians and/or mammo techs begin to order and interpret these complex panels. The genes included in Myriad’s panel testing may not have a clear course of action and could present a challenge for even the most seasoned genetics expert.

4. Patent Debate
Now that the SCOTUS has made it illegal to hold a patent on human genes, the market has burst wide open to allow companies other than Myriad Genetics to offer more comprehensive testing for BRCA1/2 at more affordable prices. While this is in the best interest of the patient and will allow greater access to care for a larger number of patients, Myriad has been suing these companies (6) in what appears to be an attempt to bully them into backing down from offering the test and/or drain their financial resources.

Some studies have shown that up to 30-40% of genetic tests are being ordered in error and are costing insurers millions in unnecessary healthcare dollars (7). To avoid such gross losses, some insurance providers are now joining in the fight to shift away from the practice of non-genetics specialists ordering genetic tests. For example, Cigna has just developed a Genetic Testing and Counseling Program that will require its customers to undergo genetic counseling by a certified genetic counselor or medical geneticist prior to having genetic testing (8). This program was developed in direct response to the high cost and adverse outcomes associated with genetic testing by non-genetics specialists.

So, has Myriad learned their lesson? It appears that the answer is no, and they continue to encourage non-genetics specialists to take on the increasingly challenging role of ordering and interpreting genetic tests, at the risk of both the patients and the well-meaning clinicians they recruit.

Niki Lovick, MS & Michelle Ernst, MS


1. Brierley, K.L., Blouch, E., Cogswell, W., Homer, J.P., Pencarinha, D., Stanislaw, C.L., Matloff, E.T. (2012). Adverse Events in Cancer Genetic Testing: Medical, Ethical, Legal, and Financial Implications. Cancer Journal, 18:303-309.

2. Brierley, K.L., Campfield, D., Ducaine, W., Dohany, L., Donenberg, T., Shannon, K., Schwartz, R., Matloff, E.T. (2010). Errors in delivery of cancer genetics services: implications for practice. Connecticut Medicine, 74(7):413-423.

3. Lindor. R.A.,Marchant, G.E., O’Connor, S.D. (2011). A review of medical malpractice claims related to clinical genetic testing. Journal of Clinical Oncology, 29(15_suppl): abstract 6073.

4. Matloff, E.T., Caplan, A. (2008).Direct to Confusion: Lessors Learned from Marketing BRCA Testing. The American Journal of Bioethics, 8(6):5-8.

5. Myriad Genetics. “Myriad Genetics Launches myRisk ™ Hereditary Cancer Panel.” Myriad Press Release. 5 Sep. 2013. Web. 6 Sep. 2013. <http://investor.myriad.com/releases.cfm>

6. Noonan, K.E. “Myriad Genetics Files Law Suit Against Ambry Genetics for Genetic Diagnostic Testing of BRCA Genes.” Patent Docs. 9 Jul. 2013. Web. 6. Sep. 2013. <http://www.patentdocs.org/2013/07/myriad-genetics-files-suit-against-ambry-genetics-for-genetic-diagnostic-testing-of-brca-genes.html>

7. White-paper-1-value-of-GCs-in-lab.pdf">Miller, C.E., Krautscheid, P., Baldwin, E.E., LaGrave, D., Openshaw, A., Hart, K., Tvrdik, T. “Value of Genetic Counselors in the Laboratory.” ARUP Laboratories. Mar. 2011. Web. 3 Sep. 2013. <www.aruplab.com/files/resources/genetics/White-paper-1-value-of-GCs-in-lab.pdf>

8. National Society of Genetic Counselors. “Genetic Counseling Program Gives Cigna Customers Increased Access to Genetic Counselors.” NSGC. 23 Jul. 2013. Web. 30 Aug. 2013. <www.nsgc.org/Portals/0/Media/Genetic%20Counseling%20Program%20Cigna.pdf>


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