Cost, coverage remain hurdles to standard genetic testing

(Third in a four-part series on genetic screening for Jews)

When Andi Minkoff, a Phoenix philanthropist, started raising money to spread the word in her community about the importance of Jewish genetic screening, she realized she was creating a serious problem.
In 2002, with the help of a $2,500 community grant, she and her husband, Sherman, began educating physicians and rabbis in Phoenix about the importance of encouraging people to get tested for the then four identified genetic diseases prevalent among Ashkenazi Jews.
“Then we found out how expensive the tests are,” Minkoff said. “We realized we really were causing a significant conflict for people, telling them, ‘You may be at risk, but it costs $1,000 to test for a four disease panel.’
“We realized we needed to provide affordable testing,” she said.
Providing affordable testing is a key component in the campaign to educate Jews about the importance of pre-conception screening. There is now a panel of 18 diseases for which Ashkenazi Jews can be screened, but if one does not have an insurance policy that covers it, testing for that panel can run about $4,000. Without the help of philanthropic dollars, screenings are simply out of reach for much of the population for which they are most useful — those in their 20s or 30s who have not yet conceived a child.
The Pittsburgh Jewish community is now beginning to engage in a campaign to raise awareness of the 18 genetic diseases prevalent among Ashkenazi Jews, propelled by a three-year grant from the Highmark Foundation, the Jewish Healthcare Foundation, the Jewish Federation of Greater Pittsburgh, Genzyme and the Fine Foundation. While some of the grant money will be used for educational programs, the majority of the funds will be spent on covering the costs of three planned screenings.
The first screening will be held at Hillel Jewish University Center Wednesday, Oct. 13, from noon to 8 p.m.
Ashkenazi Jews between the ages of 18 and 29 must register to be screened at victorcenters.org/screenings, a site managed by the Philadelphia-based Victor Center for the Prevention of Jewish Genetic Diseases, a partner in the Pittsburgh community effort. The Victor Center will then check with the insurance carriers of each individual to see if screening for Jewish genetic diseases is covered, said Shoshana Rosen, outreach coordinator for the Victor Center. The grant funds will be used to subsidize screenings for those who are uninsured or under-insured.
Because insurance coverage for Jewish genetic screenings varies by region, as well as by the individual policies provided by various employers, community dollars are imperative to ensure that everyone can get screened, said Debby Hirshman, national director of the Victor Center.
“Insurance does not preclude the need for philanthropic underwriting,” Hirshman said, “because, first, not everyone has insurance. Also, there may be people who are covered by insurance, but their co-pay would make the cost too high. Finally, there may be a group that has insurance, but their policies don’t cover the screenings.”
Since 2005, the Jewish Genetic Diseases Center of Greater Phoenix has provided community subsidized screenings for 678 people. About one in five of those screened — 130 people — have tested positive for carrying at least one disease. The screening cost for most people is $50.
“We just wanted to charge $50,” Minkoff said. “And the only way to do that was to raise money in the community.”
The Phoenix fundraising effort has been successful. While incorporated for just three and a half years, the Jewish Genetic Diseases Center of Greater Phoenix now has a half million dollar endowment and provides subsidized screenings twice a year.
Likewise, the Chicago Center for Jewish Genetic Disorders has been providing its community with subsidized genetic screenings since 2002.
“We’ve been holding the screening four times a year,” said Karen Litwack, director of the CCJGD, “but there has been such a high demand, we recently got funding for a fifth.”
The CCJGD screens about 200 Jews a year, focusing its efforts on young couples in their 30s, who are in the midst of family planning, rather than on college students. It partners with Children’s Memorial Hospital and the Jewish United Fund/Jewish Federation of Metropolitan Chicago. A grant the CCJGD got in 2002 from the Federation renews each year, Litwack said, and the organization recently obtained an additional grant from a private donor.
Chicagoans who are screened are charged a fee of $110 for a panel of nine diseases, said Taryn Brickman, the CCJGD’s community outreach coordinator.
“We ask that people check with their insurance first,” Brickman said. “We provide them with the testing code. Occasionally, insurance will cover this. But if someone has insurance that covers it, the co-pay still can go through us. Often, the co-pay is so high, the screening is not feasible for some people.”
Statistics regarding insurance coverage vary by region, Rosen said, but about 60 percent of insurance policies in the Philadelphia area do include Jewish genetic screening as a benefit.
“In Atlanta and Philadelphia, they have good coverage,” she added. “In Chicago, they are investigating insurance coverage.”
If it is found that insurance coverage for Jewish genetic screenings is not widely available in a particular region, then efforts will be made to change the paradigm, Hirshman said.
Following the Oct. 13 Pittsburgh screening, the Victor Center will be able to assess the level of insurance coverage locally; it can then make a plan to make pre-conception screening for Jewish genetic diseases standard in the community, according to Hirshman.
“One has to determine where the barriers are, then begin lobbying,” she said. “Are the barriers the insurance companies, or are employers not taking the benefits?”
In Pittsburgh, at Highmark Blue Cross Blue Shield, for example, screening for asymptomatic patients can be covered, but it is up to the employer if that benefit is included in a policy, said Phil Neubauer, a spokesperson for Highmark.
While CIGNA does not cover routine testing in the form of a carrier screening panel, it does cover genetic testing for specific genetically transmitted diseases as medically necessary when established criteria are met, such as when a patient has several relatives affected by a certain disease, according to Kathleen Keenan, spokesperson for CIGNA.
UPMC did not return several calls from The Chronicle.
“The Victor Center doesn’t know where the barriers in Pittsburgh are yet,” Hirshman said. “When we begin the process, it will give us the ability to sort out the strategies. That’s part of the value of having a three year process.”
“It’s all about raising the standard of care in a particular community,” Hirshman continued, noting that insurance coverage for screenings is widespread in New York because of the research and education done by Mt. Sinai Hospital and New York University Medical Center.
Pittsburgh’s recent campaign to create awareness, and offer community screenings, is the first step in raising the standard of care here, she said.
“What you want ultimately is for doctors to be aware [of the importance of screening], patients to be aware, and owners of businesses to be aware. That’s how you get the standard [of routinely screening for all 18 diseases] to become the norm in a community,” Hirshman said.
“Part of the grassroots effort is what we’ve already done with the awareness campaign,” Hirshman said. “Over the next three years, we hope to see that the standard of care will change.”