Fighting a Disease That Dare Not Speak Its Name
Ultra-Orthodox communities in Israel battle breast cancer — without using those words.
By Sara Toth Stub
Black-and-white posters called pashkevilim are one of the main ways that Israel’s ultra-Orthodox—who shun TV, radio, and Internet—get their information. So, when Ruth Colian, a 34-year-old Haredi mother and law student, wanted to advise ultra-Orthodox women in conservative Jewish neighborhoods of Jerusalem, Bnei Brak, and Beit Shemesh to undergo routine breast cancer screenings, she made a poster. But she faced one big problem: She couldn’t use the words breast or cancer, or her posters would surely be ripped down.
Instead, the posters that Colian hung this winter—joining dozens of others encouraging modest dress, advertising Torah classes, and bearing the names of recently deceased community members—instructed the “dear woman” to “preserve your life,” and said that “there is a 90 percent rate of survival for early detection.” They also contained a phone number to call for more information.
Even without explicit language on them, the posters worked. Colian got hundreds of calls, many from women who said they had never gone for cancer screening because they had simply never heard of it in their sheltered communities. “I especially remember one sad phone call from a 42-year-old woman, who asked me, ‘What is a mammogram?’ ” Colian said. “To ask what is a mammogram at 42 years old is a very sad thing. It is a disaster. This is what I am trying to change, just the world around me.”
In Colian’s community, where people seek guidance from male rabbis on every detail of life, issues affecting women have been overlooked, she said. Last year, she ran unsuccessfully for the Knesset on a platform of improving the rights and lives of religious women, calling her party, the first dedicated to ultra-Orthodox women in Israel’s history, U’Bizchutan (which means “and in women’s merit”). Now her focus is on improving women’s health, especially early breast cancer detection among ultra-Orthodox women, a population whose compliance with screening has been lower than average and who also die more frequently from the disease, according to several studies.
“It’s the difference between life and death,” Colian said. “And the rabbis, they always leave this subject behind.” But that seems to be changing.
In fact, Colian is among a handful of people—including rabbis—who have emerged from Israel’s ultra-Orthodox society in recent years trying to encourage breast cancer screening and discussion of women’s health issues.
“We see a meaningful change in attitudes toward screening,” said Anat Freund, a professor at Haifa University who has conducted research on ultra-Orthodox attitudes toward breast cancer and other medical conditions. “There is a lot more legitimization of breast cancer screening in the community.” The change comes as the ultra-Orthodox community has demonstrated more openness in other areas as well, including to higher education and the work force, Freund said, “but there are still lots of challenges and barriers.”
According to the Israel Cancer Association, 61 percent of ultra-Orthodox women underwent routine mammography in 2013. While that’s still lower than the 70 percent of all women in Israel who took the test, it’s a vast improvement over the numbers from just a decade ago, when the compliance rate among ultra-Orthodox women was around 40 percent, according to Miri Ziv, director-general of the cancer association.
“The gap is really closing fast,” said Ziv. She attributes much of the change to increased mobile screening clinics in ultra-Orthodox neighborhoods—as well as a historic ruling issued 15 years ago by a prominent group of ultra-Orthodox rabbis stating that it was a religious obligation for every woman over the age of 50 to get a mammogram every two years, as has been recommended by the medical community for decades.
But others say the compliance rates have not risen as significantly, especially among the most insular communities. According to patient data from Hala: The Rachel Nash Comprehensive Breast Clinic in Jerusalem, which serves all sectors of society, only about 48 percent of ultra-Orthodox Jews comply with routine screening recommendations, a rate 30 percent lower than other women.
Despite the rabbinical approval of mammography, doctors, ultra-Orthodox Jews, and others who have studied the issue say that the community’s tradition of modesty prevents discussion of the issue, so many women remain unaware of cancer screening.
“Breast is an immodest word, and cancer is ‘that disease,’ or ‘women’s disease,’ ” said Michoel Sorotzkin, an ultra-Orthodox rabbi and founder and chairman of the Hala clinic, which, although it serves all women, aims to make religious women more comfortable by taking steps like providing female doctors when requested and understanding that many patients may want to consult with rabbis before treatments.
Even without using the words breast and cancer, discussion about this disease, or any sickness, is discouraged, one 26-year-old ultra-Orthodox Jerusalem woman—who was diagnosed two years ago with breast cancer at Hala and underwent a lumpectomy—told me. The woman, a teacher who did not want her name used, is now cancer-free and was married a year ago. “Even now, my husband doesn’t know all the details of what I went through,” she said. “I don’t hide it from him, but I don’t really talk about it.” She only told her sisters and her mother, who accompanied her to her the doctor after she discovered a lump in one breast. “It’s better not to talk about it, there is a stigma, and also because then people won’t know how to interact with me,” she said. “Our rabbis say it’s not good to talk about negative things, it’s better to be positive.”
A Haifa University study based on interviews with groups of ultra-Orthodox women found that this way of thinking was deeply entrenched, with women indicating that talking about negative things reflects a lack of faith. The majority also said their religious lifestyle would protect them from disease, thus reducing the need for medical checkups.
But rabbis are increasingly realizing that they must change this way of thinking.
“It seems that women today are in danger,” Moshe Sternbuch, vice president of the rabbinical court of Eidah HaHaredis, the leading ultra-Orthodox religious legal authority, wrote recently in a widely distributed rabbinical decree. “You should not rely on the biblical verse that God will protect, but rather be vigilant about check-ups.” In April, the ultra-Orthodox weekly Yated Neeman, a publication so concerned with modesty that it doesn’t print women’s names but instead uses only their first initials, printed Sternbuch’s statement. It was accompanied by statements from other rabbis emphasizing the previous psak on the issue, 15 years ago, stating that it is a religious obligation for women over 50 to get mammograms and other tests as needed.
“But this time the wording was much stronger,” said Sara Siemiatycki, the ultra-Orthodox founder and director of Bishvilaych, a women’s nonprofit health clinic founded to serve religious women in Jerusalem. Sorotzkin, at Hala, also said such a statement signals a change in attitude. “They see what’s happening,” he said. “Sometimes you need a collection of tragedies before taking action.”
When Colian saw the article, she said she was shocked. Like her posters, it does not mention the words breast or cancer, but does convey a strong message. “I couldn’t have dreamt of it,” she said. “It’s a piece of history.”
In addition to spreading the message about the importance of mammograms, other efforts in ultra-Orthodox communities are focusing on dispelling the fear associated with discussions about breast cancer. In the absence of the pink ribbon campaigns and other publicity about breast cancer that have become ubiquitous in secular society, many ultra-Orthodox women are not aware that survival rates for breast cancer are actually high, around 90 percent, as long as the disease is caught early.
Bishvilaych will soon hold its fourth in a series of community meetings for women in ultra-Orthodox neighborhoods, where cancer survivors will speak. A 49-year-old Jerusalem woman who spoke at one of Bishvilaych’s recent informational sessions told me that one of the main reasons she went to a doctor after finding a lump in her breast was that her mother had breast cancer and survived. “So, I knew there was a good chance of survival, because my mother is still alive today,” said the woman, who didn’t want her name used. “I want people to know that it’s not so scary, that it can be cured. I know that after I talked, the people who heard me went to get checked, because they heard me say that the rate of survival is high.”
Bishvilaych’s evenings also set aside time for women to receive manual breast exams. The organization runs a training program in which breast surgeons teach family physicians that serve the ultra-Orthodox sector about the importance of clinical breast exams and how this can be an effective way to spread awareness among religious women. In general, the Israeli health system recommends women see a breast surgeon for this sort of exam, but Siemiatycki said that this creates another barrier.
“The next step is really getting more of the primary care doctors to talk to women,” Siemiatycki said. “And we are making this change.” Although manual, clinical breast exams are not a replacement for a mammogram, she said, “they are a teachable moment for women to talk about breast health.”
Hala is also planning a series of community meetings where female doctors and other breast cancer experts will speak about ways to prevent and screen for the disease. The advertising materials for the events emphasize the positive, highlighting the idea of saving lives—often seen as the most important religious commandment—in order to pique women’s interest without offending modesty standards.
“You have to gift-wrap it,” Sorotzkin said.
This project will target the most closed of the ultra-Orthodox communities, including various Hasidic groups and those communities so opposed to Zionism that they do not recognize the state of Israel and so do not have the socialized, government-funded health coverage available to all citizens.
“The idea is to penetrate the real hard core that is totally disassociated and disconnected,” Sorotzkin said. “This is not about supporting the state, or going to the army or not going to the army,” he said, citing controversial issues that often separate ultra-Orthodox from other Jewish Israelis. “You are playing bingo with your life.”
In another recent development, the Israel Cancer Association has been holdings meeting with ultra-Orthodox leaders on the topic of testing for mutations in the BRCA gene, which indicate a higher susceptibility for breast and ovarian cancers. It is estimated that one in every 40 people of Ashkenazi descent carry such a mutation. While the medical community in general is still formulating policies on whom should be tested and when, the issue is even more complex in the ultra-Orthodox sector. In addition to concerns about the impact of genetic testing on marriage prospects, there are also halakhic issues with how to treat women at higher risk of developing cancer, including the practice of preventative mastectomy and hysterectomy, Sorotzkin said.
“There is an increasing awareness that this is an important subject,” said Ephrat Levy-Lahad, director of the medical genetics institute at Shaare Zedek Medical Center in Jerusalem, which is working with the cancer association to reach out to the ultra-Orthodox sector on the issue of genetic testing in connection to breast cancer. “You just have to do it in a way that’s open to their social and cultural environment.”
Colian said that all of these developments are signs of hope. While she said there is no way to measure the full effectiveness of her poster campaign or prove that the recent stronger rabbinical statements are connected, she considers her efforts successful. “If you do good things, you never know how many people it will reach,” Colian said. “It’s like when you throw a stone in the water, and it creates lots of circles.”