Rosa survived both breast and ovarian cancer. In her case, the cancer was caused by a genetic mutation known as BRCA which she inherited from her father. The genetic mutation affects one in forty Ashkenazi Jews, and is also found in smaller numbers of Jews with Iraqi heritage.
Carriers have a fifty percent chance of passing the gene on to their children. The gene is found to a lesser extent in French Canadians-most notably Angelina Jolie (who has French Canadian heritage) who has shed light on the issue by going public with her and her family’s medical journey.
The goal of the “Prevention Generation Program” is to raise awareness for testing of the BRCA mutation and to offer an online family history test in order to determine if the risk of genetic cancer is high enough to warrant further testing. So far 34,000 people have done the test.
However, Rosa says that the number is still way too small and that fears, stigmas, and lack of awareness within the Israeli public are a major component in keeping thousands of carriers from being tested. Knowledge of a positive test result is the best way to ensure that any likely cases of cancer are detected and prevented at an early stage.
According to Rosa, the problem starts when carriers don’t share medical history information with family members who may also be carriers. Carriers often hide the fact that their cancer has a genetic link. They don’t want to cause fear in their families. In addition, Rosa has found that there are many stigmas regarding families with multiple cases of cancer. They do not want to be known as the family where everyone has cancer, so they choose to keep the information private. These negative feelings and stigmas prevent people (especially male carriers who are often overlooked) from seeking the testing and screening necessary in order to prevent cancer. This silence risks not only the lives of the carriers but also the lives of family members.
The problem becomes even more evident in the ultra-Orthodox community where there is a heavy reliance on match-making, as stigmas like genetic cancers can hinder desirable matches. Women will avoid testing before marriage in order to ensure themselves a good match, and won’t test after marriage in order to avoid a familial stigma, thus ensuring a good match for their children.
Rosa says that she has encountered resistance in setting up meetings with Rabbis and their wives in order to raise awareness on the topic in their communities. She has found that there is a lot of fear surrounding the topic of cancer in the ultra-Orthodox community. They even refuse to say the word “cancer,” instead referring to it as “the disease.”
“The Rabbis don’t encourage testing and refuse to elaborate on the topic. In addition, they discouraged their wives from meeting me, something I thought would be a great way to support and empower the woman of the community. In the end it was not possible to arrange a meeting of any kind.”
The last few decades have seen incredible developments made in the field of cancer research. People who notice that there are many cases of breast or ovarian cancer in their families must overcome these fears and get tested. If they discover that they are carriers and consult with their specialists they can take the measures necessary to possibly save their own lives and those of their family members who may also be carriers. Although the thought of cancer is terrifying to any normal person there is a silver lining. Someone who knows that they are a carrier can take the proper measures to live a full and healthy life and break fears and stigmas by raising awareness on the topic.