For many women, no illness inspires as much dread as breast cancer. The disease is linked in women's minds to images of mutilating surgery, harsh drugs, suffering, and death.
Yet increasing numbers of breast cancer survivors in the United States are fighting back -- not through cures that remain as elusive as ever but with better advocacy and peer support.
But, thanks to a six-year effort launched by the American Jewish Joint Distribution Committee (JDC) -- a beneficiary of the UJA Network Campaign -- breast cancer patients abroad are embracing similar models, learning to share with each other knowledge, experiences, and coping skills. This effort comes amid research suggesting that Ashkenazi women are five to ten times more likely than other women to be born with a mutant gene, BRCA, associated with breast and ovarian cancer.
The project is based on SHARE, a self-help organization for women with breast and ovarian cancer, and underscores the organization's belief that women talking to women who have similar life-threatening illnesses empower both sides.
"I saw how effective peer support was in a city as diverse as New York and thought ‘why not export it," said Marcia Presky, a SHARE volunteer and senior project manager at JDC. Ms. Presky had lost her own mother to breast cancer several years ago and found assisting women stricken with the disease a healthy outlet for her depression and pain.
That's when she introduced SHARE to her colleagues at JDC, which in turn began an initiative in Czech Republic. Through JDC and the Women's Health Empowerment Program, breast cancer survivors in American traveled to the former Communist country to meet with their counterparts and help spur public policy advocacy, coordinate development of social services, and explore ways to expand public education on the issue. (The Women's Health Empowerment Program is an Israeli-American partnership sponsored by SHARE, JDC, the Israel Association of Women's Health (IAAWH), and the Israel Cancer Association Support for the programs also comes from philanthropists Andrea and Charles R. Bronfman.)
"The response we received from the Czech participants was nothing short of over whelming," said Presky. Women who rarely discuss their illness, even with families and friends, began breaking their self-imposed silence. They soon transformed their "informal breast cancer clubs" into more expansive organizations that offered education and support services on cancer treatment and prevention. Even more impressive, Presky noted, was how quickly Czech women learned the power of advocacy in a country still learning democracy.
Buoyed by their success, JDC officials took their model to Israel where breast cancer rates are among the highest in the world. According to Israeli health statistics, some 2,400 women (one in every 116) are diagnosed annually with breast cancer and 800 die from the disease.
Despite Israel's extensive healthcare network, breast cancer prevention programs, including screenings, are rarely used. Fewer than half the women over age 50 receive mammograms; clinical breast exams are not standard primary care, and breast self-exams are not regularly encouraged.
Arming women with tools to better cope with their disease remained the focus of JDC's efforts.
To that end, breast cancer survivors from SHARE came to Israel four times over the past year, training their Israeli counterparts in developing peer support, exploring options, establishing hotlines, organizing and running workshops, and pinpointing areas of need among varied ethnic and religious groups.
More than 200 women now participate in the workshops and hotlines, say organizers, who often arrange separate meetings with medical professionals -- clinicians, researchers, radiologists, pathologists, surgeons, epidemiologists, and nurses -- to sensitize them to women's concerns. Such briefings, said Presky, make the workshops and dialogue sessions between patient and caregiver more effective.
With two countries under their belt, JDC and its partners took on yet a bigger challenge: bringing their cancer-support model to women in Ukraine, a country afflicted with severe poverty and horrendous healthcare conditions.
Fortunately, said Presky, some important groundwork had already been laid. A Seattle-based organization, PATH (Program for Appropriate Technology in Health) had launched a three-year breast cancer program in the country. The organization sought JDC's help in providing counseling and therapy.
Soon, two breast cancer survivors active in JDC initiatives in Israel and the Czech Republic arrived in Ukraine and, within weeks, helped women there organize support groups, survivor organizations, and advocacy and coalition-building activities.
JDC and PATH, along with Connections Health Consulting, introduced public education and people-to-people programs that involve breast cancer patients and their families and doctors.
"The challenges are enormous," added Presky, describing a post-Soviet bloc healthcare system that's "barely functioning."
"PATH established a strong infrastructure, and we have a model that works, so the risks have been minimized," she said.
Presky said efforts to create a global breast cancer movement reflect a key component of JDC's work: providing money to initiative innovative projects and leveraging resources from other partners, including governments, to keep the programs running.
Another feature is to tailor programs to accommodate local needs. Presky cited in particular the Israel model in which organizers developed activities suitable for different groups of women, including the ultra-Orthodox, immigrants from the former Soviet Union, and Israeli Arabs.
In some instances, she added, the key is to understand what's realistic in a particular community. In Ukraine, she said, it's unlikely that women will seek mammograms twice a year; therefore, the program may emphasize providing more x-ray equipment instead.
Whatever the conditions in a particular country, Presky said, the key remains empowering women to take control of their lives. And that power may prove their most important weapon for survival.