MOSCOW (JTA) – For someone suffering the debilitating effects of end-stage breast cancer, Galina Isakovna Masnikova weaved quickly and enthusiastically through the packed conference room, wearing a tranquil smile on her face.
“We have a fable in Russian that’s very famous about two frogs that found themselves in a jar of milk,” Masnikova said. “One of them didn’t want to work and it drowned, but the other one was happy to struggle. It beat its little legs and it made the milk into butter.”
Masnikova, a Jewish retiree living in Moscow, was among dozens of breast cancer survivors whose stories were part of the American Jewish Joint Distribution Committee’s Women’s Health Program, a unique three-day conference held Oct. 24-27 in Moscow.
By organizing an unprecedented gathering of survivors, medical experts and government officials from across Europe and central Russia, the JDC was hoping to make a major impact on tens of thousands of women who, regardless of ethnicity, are suffering from a lack of knowledge, support and basic health-care materials.
Though the initiative was part of the JDC’s International Development Program, a nonsectarian division focused on outreach outside the Jewish community, many attendees were Jewish, as were a majority of the facilitators brought in from local nongovernmental organizations.
About 50,000 women in Russia are diagnosed annually with breast cancer, making it the region’s second most common oncological disease. Ashkenazi women are disproportionately prone to breast cancer.
Following the collapse of the Soviet Union in 1991, Russia’s health-care system, once considered among the world’s finest, failed disastrously. Since then the country has struggled to regain its footing.
“Things have gotten much worse” since the fall of communism, Masnikova says.
When she was diagnosed 10 years ago, Masnikova says she had to fight doctors just to get a mammogram. Next year the government will be cutting her government-subsidized medication even further.
Breast cancer has become the most common cause of death among Russian women aged 45 to 55 — something the JDC says is a consequence of a lack of knowledge about the disease, a lack of preventive measures and a lack of counseling skills among health-care providers.
The conference, part of a women’s health initiative launched three years ago, was funded jointly by the JDC and the U.S.-based Susan G. Komen for the Cure Foundation, one of the largest groups worldwide dedicated to breast cancer activism. Project Kesher, a Jewish women’s organization, also was a partner.
For some JDC participants, the program had a strong personal element.
Marsha Presky, a former director of the JDC’s International Development Program in New York and a driving force in setting the agency’s agenda on women’s health, died from the disease last year. Presky became a rallying point among JDC staffers for holding the conference.
Session workshops brought together survivors and health-care professionals to tackle the problems of advocacy, doctor-patient relations and education.
Mandie Winston, the JDC deputy director for Moscow and Central Russia who helped spearhead the event, said Russian Jewry’s relationship to the larger community helped bring non-Jews and Jews together for the conference.
“One thing that typifies Russia is that we don’t have a Jewish community which exists in a vacuum outside of the rest of society,” she said.
Frustration with the Russian health-care system was a constant refrain in conference sessions. At one point, a fiery-haired young doctor yelled out, “Yes we have a system, but it’s a stupid system!”
During a tense advocacy workshop, facilitator Ekaterina Shubert issued this refrain to impatient participants: “Yes, that’s very good,” she said, “but what are you going to do about it tomorrow?”