|Advocating for Genetic Information Nondiscrimination|
In Memory Of Marla Gilson
One of the most active and ardent advocates for GINA was Marla Gilson, an executive committee member of the Coalition for Genetic Fairness. We mourn her passing for the dear friend she was, as well as the model of the search for justice in the world she offered us. We are grateful that her time on earth brought about such liberty for so many people in so many fields.
Marla Gilson, a lobbyist and Democratic Party activist who advocated for women’s health causes and helped pass a federal law prohibiting discrimination based on genetic testing results, died Oct. 29 at her home in Chevy Chase. She was 60.
She had leukemia, said her sister, Della Gilson Levy.
For more than a decade, Ms. Gilson was the chief Washington lobbyist for the Jewish women’s volunteer organization Hadassah. In addition to fostering strong U.S.-Israel relations, she was known for her advocacy of reproductive rights and federal funding for stem cell research.
“Hadassah can make a big impact, because we are so large and we have real credibility on this issue,” Ms. Gilson, speaking of stem cell research, told the Forward newspaper in 2005. “If there is a [legislative] district that has a targeted member, we have someone who can call them up and talk on this issue.
“We have seen instance after instance where a member of Congress was absolutely tied to a position, and we brought in a 10-year-old diabetes patient or a young woman attached to a wheelchair,” Ms. Gilson said. “Seeing that real people are tied to research has had an impact.”
As genetic testing became more readily available in the late 1990s, Ms. Gilson spent a decade lobbying against discrimination based on the findings from such tests. She started to hear of cases in which insurance companies denied individuals coverage based on genetic test results.
Hadassah had a particular interest in this health issue because certain mutations that have been linked to breast and ovarian cancer have a higher frequency among Jews from Eastern and Central Europe.
Ms. Gilson said the issue was not just a “Jewish problem.” As science advances, she told the Baltimore Jewish Times in 1997, “eventually everyone in the country will be affected.”
Ms. Gilson helped form the Coalition for Genetic Fairness and worked through Hadassah chapters around the country to build support for the 2008 Genetic Information Nondiscrimination Act, which prohibits discrimination against individuals in health insurance and employment on the basis of genetic information.
“She was widely recognized as a leader in getting that into law,” said William Daroff, director of the Washington office of the Jewish Federations of America.
More recently, she was president and chief executive of the Association of Jewish Aging Services of North America, an umbrella organization for 112 Jewish nursing homes and facilities for the elderly.
As a cancer patient, Ms. Gilson faced in the last year of her life what she described as workplace discrimination. After her diagnosis in December, she asked to work from home while recovering from a bone marrow transplant.
The board of directors of the association, which is based in the District, said at the time that they needed a director who could meet with people in person. The board dismissed Ms. Gilson in April.
Her removal was widely criticized and spawned outraged editorials in Jewish newspapers across the country. The group settled with Ms. Gilson in May, agreeing to provide additional severance and financial support to cover medical expenses.
Marla Fran Gilson was born Aug. 23, 1951, in Brooklyn. She graduated from the University of Maryland in 1973 with a bachelor’s degree in sociology.
She subsequently worked on Capitol Hill as a staff assistant to Rep. Bella Abzug (D-N.Y.) and as a legislative assistant to Rep. Bob Traxler (D-Mich.). In 1979, she joined the American Israel Public Affairs Committee as a lobbyist and director of community relations.
She stayed involved in Democratic Party politics. She met her husband Carl Tuvin, a lobbyist and public relations consultant, at a party for another Democratic activist. The couple married in 1984, while Ms. Gilson was working on former vice president Walter Mondale’s unsuccessful presidential campaign.
Survivors include her husband and their two children, Alex Tuvin and Julia Tuvin, all of Chevy Chase; her mother, Selma Gilson Friedman of Denver; and a sister.
In 1997, Ms. Gilson opened the Washington action office of Hadassah. There, she lobbied for federally funded stem cell research. At a 2009 meeting with Jewish leaders at the White House, she made a point of thanking President Obama in person for signing an executive order ending a Bush-era limit on federal tax money for embryonic stem cell research.
She was laid off from Hadassah in 2010 when the group lost millions of dollars in the massive fraud perpetrated by Wall Street financier Bernard Madoff. The Association of Jewish Aging Services recruited her to be its leader, and she was diagnosed six months later with leukemia.
–reprinted from the Washington Post
I was so sad to learn that Marla had died over the weekend. What a tragic loss. One of my clearest memories of working on GINA was a call I had with her early on when I was at NHGRI. For some reason she was concerned that the bill wasn't headed in the right direction and she got me on my cell phone when I was down town. We had about an hour long call (I was outside the Capitol on a freezing day) where she began by questioning the whole GINA effort, but by the end of the call we had agreed that it was critical for her and Hadassah to continue to play a leading role in the GINA advocacy effort. After that I don't think she ever looked back. That wasn't so much because anything I said, but rather as we discussed it she began to see the key role her organization could play. Of course she did lead and I doubt the bill would have moved had it not been for Marla's efforts as part of the Coalition. On top of that she was very maternal in her approach, which made everyone want to do things for her. She will be missed. Thanks again.
Please contact Sharon Terry at firstname.lastname@example.org with any questions about the Coalition for Genetic Fairness and its activities.