Highmark's new screenings to help Jewish population

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In the Eastern European-descended Jewish population, as in many homogeneous ethnic and cultural groups that have historically intermarried, parents are at greater risk of passing inherited diseases onto children.

In fact, as many as 1 in 5 Jews may be "healthy carriers" of a genetic disease or disorder.

It's why public health advocates encourage Ashkenazi Jews, particularly college-aged ones, to be screened to see if they carry any of those diseases. And it's why Pittsburgh health insurer Highmark Inc., starting in January, will cover pre-pregnancy, nonsymptomatic blood screenings for 19 different diseases and genetic conditions.

Those include Canavan disease, a brain and nervous system disease carried by 1 in 40 Jews; Gaucher disease, a liver- and marrow-damaging lipid disorder carried by 1 in 15 Jews; and Tay-Sachs disease, a vicious nervous disorder that causes blindness, deafness and the eventual deterioration of nearly all physical and mental abilities, carried recessively by 1 in 25 Jews.

"The idea is [to] screen individuals at an early enough age, [to] see if they are a carrier of the disease," so they know what risk they may or may not be taking in having children, said Virginia Calega, Highmark's vice president of medical management and policy.

Highmark was convinced to cover the screenings in its basic benefits packages by several Jewish health care advocates, including Dodie Roskies of the Jewish Healthcare Foundation and the Pittsburgh Victor Center Partnership, an offshoot of the Victor Centers for the Prevention of Jewish Genetic Diseases, based in the Einstein Medical Center of Philadelphia.

Ms. Roskies said Highmark's decision could prove beneficial for more than 5,000 Pittsburgh-area Ashkenazi Jews between the ages of 18 and 29, and many more thousands who are in their 30s and trying to have children.

Genetic screenings are common -- and often covered by insurance -- during pregnancy. But historically they weren't covered pre-pregnancy or among the nonsymptomatic -- that is, healthy people who don't exhibit symptoms.

Those who wanted to pay for such screenings on their own found it prohibitively expensive -- $1,000, for example, to test for just four of the disease markers. Testing for all 19 might cost $4,000 or more. Synagogues and college Jewish centers tried to defray that cost by organizing, and subsidizing, group screenings.

The work of the Victor Centers has helped bring insurance coverage about city by city, insurer by insurer, persuading insurers that the screenings would pay for themselves and prevent not just the emotional cost, but also the real dollars-and-cents cost of treatment in the Jewish population. Medicine for Gaucher disease can easily cost insurers more than $150,000 a year, for example.

Pittsburgh, though, remained an outlier in that the two largest insurers, Highmark and UPMC Health Plan, did not pay for the screenings, even as national insurers had begun picking up the tab.

"We were astonished," said Arnold W. Cohen, physician and chairman of the OB-GYN unit at Einstein Medical Center. "In Boston, Philadelphia, Atlanta, Los Angeles this has not been a problem."

Before setting about to "fix" the problem, Highmark and its philanthropic foundation worked with the Hillel Jewish University Center in Oakland and funded a two-year research and outreach grant to screen young adults, aged 18-29, in the Pittsburgh region.

The screenings found that of the 340 people who volunteered to be screened, about 85 were carriers of at least one of the 19 diseases.

While the new Highmark coverage will be important to the Pittsburgh Jewish community, since Highmark is the region's and state's largest health insurer, Debby Hirshman, national director of the Victor Centers, said she hopes genetic blood tests are also encouraged among other populations.

"We hope that it serves as a model for other ethnic groups and communities to do genetic screening," she said. The black community carries the sickle-cell anemia trait at rates greater than the general population. And Tay-Sachs is more common among the Irish and French-Canadians than most other groups.

Highmark will be covering the screenings for all members, though most won't need it. "This ethnic group will tend be the highest utilizers of these screening," Dr. Calega said.

While the 19 genetic diseases are included on the list because they occur at higher incidences in the Jewish population, there isn't consensus on best practices. The American College of Obstetricians and Gynecologists, for example, recommends patients of Eastern European Jewish ancestry be offered carrier screening for Tay--Sachs disease, Canavan disease, cystic fibrosis and familial dysautonomia. Another medical trade group recommends testing for just 10.

The Victor Centers was founded and seeded by Lois B. Victor, a Florida woman who lost two daughters to genetic disease, Ms. Hirshman said.

The ultimate goal of the screening and the awareness campaign, she said, is "giving birth to healthy babies," and giving options -- such as in vitro fertilization -- to couples that carry the same genetic markers.

businessnews - health

Bill Toland: btoland@post-gazette.com or 412-263-2625.

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