By Ralph Ranalli

Dr. Yasmeen Abu Fraiha MC/MPA 2022, a leader in genetic testing for the Bedouin community in southern Israel, will use her Kennedy School education to broaden her impact on health care in the region.

Working at the only hospital in the Negev desert region of southern Israel, Dr. Yasmeen Abu Fraiha MC/MPA 2022 would often see elderly patients admitted at the end stage of life. Some would have a few family visitors. Others died alone. But she noticed that when a patient from the Negevs’ Bedouin community would arrive, “there were always 50 people around the bed.”

“It was their way of saying: ‘You are not going to be alone,’” she says. “Some doctors didn’t like it, because it created noise and mess. But I started seeing it as a beautiful tradition—they were showing the importance of people being there for each other.”

That was just one of a number of experiences in that hospital that helped shape the direction of Abu Fraiha’s life, which has come full circle to serving the Bedouin community she was born into, but was disconnected from for many years.

There are an estimated 270,000 Bedouin in what is now southern Israel. They were traditionally a nomadic Arab tribal people, but some began to settle into villages beginning in the early 1800s—a trend accelerated by an Israeli government policy of compulsory sedentarization beginning in the 1950s. While some 40% of Bedouins still live a semi-nomadic life in tent settlements, most now live in towns built for them in the desert.

Most of those towns—like Tel Sheva where Abu Fraiha was born to a Bedouin father and a Palestinian mother—are desperately poor. When she was five years old, her parents moved the family to Omer, a wealthy suburb of Beersheba. On the Israeli government scale that ranks communities by socioeconomic status on a scale of 1 to 10, Tel Sheva was a 1. Omer was a 10. And while the move allowed Abu Fraiha to gain an education she would not have received in Tel Sheva, she was acutely aware that she was the only Muslim at her school. “I wanted to belong to my group of friends, but I always felt I was different,” she says. “I had different practices at home, we spoke a different language.”

Yasmeen Abu Fraiha headshot.

 

When Abu Fraiha was a teen, her life took another turn when her mother was diagnosed with breast cancer. “I remember seeing the doctors in their white coats—I saw them as angels, they had this amazing power to help people,” she says. Feeling helpless as she watched her mother suffer the side effects of chemotherapy, Abu Fraiha set her mind on being a doctor, eventually going on to study medicine at Hebrew University in Jerusalem. Full of zeal and a desire to help the less fortunate, she says she originally saw herself working with children in Africa for an NGO like Doctors Without Borders.

“But during my time in Jerusalem, I was working with Palestinian communities from the West Bank and in East Jerusalem and seeing their life conditions,” she says. “And I said to myself, ‘OK, maybe I really don’t need to look that far away.’ There's a lot of change that we need to do right here.”

So, for her residency, Abu Fraiha chose to move back home and work at Soroka University Medical Center in Beersheba, which serves 1 million people in southern Israel, including the Bedouin community. It was there where she saw another, vastly more disturbing trend peculiar to her father’s people—their babies were dying at four times the infant mortality rate for Jewish Israeli children, mostly due to birth defects. Metabolic diseases and serious blood disorders are common, she says, but some Bedouin also babies suffer horrific genetic diseases they never taught her about in medical school, including congenital insensitivity to pain with anhidrosis, or CIPA, a rare genetic defect that renders a child unable to sweat or feel pain—a deadly combination in a desert-dwelling people.

Determined to do something for Bedouin women and their families, Abu Fraiha applied to and was accepted in the first cohort of Our Generation Speaks, an incubator for Israeli and Palestinian social enterprise ventures based at Brandeis University’s Heller School of Social Policy and Management. To attack the problem at its source, it was there that Abu Fraiha founded Rodaina, an NGO that works to prevent genetic diseases by promoting premarital genetic testing and matching.

The high rate of birth defects in Bedouin babies is tied directly to the fact that so many young people in the insular, highly-traditional community marry relatives. By some estimates, 65% of Bedouin in the Negev marry first or second cousins, greatly increasing the odds that spouses will have the same genetic mutations leading to birth defects. 

“Our focus has been more on treating diseases and less on promoting health, and the way I see health care is that our job is to promote health.”

Yasmeen Abu Fraiha

Rodaina works to break down cultural barriers to genetic testing. Women are often reluctant to get tested fearing they will be stigmatized, she says, while many men refuse because of a persistent myth that only women carry genetic diseases. Rodaina works with religious leaders to help combat misinformation, and has founded women’s groups to spread the word virally within communities. Much of their information has also been recorded on phone-friendly video, due to high rates of illiteracy.

One thing the campaigns do not do, however, is tell people who to marry or not to marry. “We've made a conscious decision,” she says, “not to tell you what to do, but from a very respectful place we will help you make an informed decision for you and your family.”

Abu Fraiha served as both Rodaina’s executive director and as the hospital’s chief resident, a vantage point that allowed her to see the other barriers to helping the Bedouin get genetic testing, but also more generally get access to health care. Some are political—the high birth rate among Israeli Arabs is a frequent talking point for right-wing politicians, for example, making any effort to help Muslim mothers politically fraught. The COVID-19 pandemic also highlighted systemic inequities in care that need to be addressed, she says.

“I saw that there was this amazing segregation between the medical world—public health professionals—and the politicians who made the decisions,” she says. “Our focus has been more on treating diseases and less on promoting health, and the way I see health care is that our job is to promote health.”

She decided to apply to the Kennedy School, she says, to make a bigger impact in those policy discussions. Among the classes that helped her most were Professor Marcela Alsan’s “The Economics of Infectious Disease” (SUP-518)—“one of the best classes I took at HKS,” she says—as well as King Hussein Bin Talal Senior Lecturer Ronald Heifetz’s course on leadership and Senior Lecturer Christopher Robichaud’s class on misinformation. She said she was also honored to have taken a class at Harvard College on the politics of health disparities with global public health pioneer and Partners in Health founder Paul Farmer before his death earlier this year.

“I felt like I needed another point of view and I felt the Kennedy school could give it to me,” she says. “I studied climate and I studied leadership and I studied politics. When you only look at things from the narrow view of public health, you don’t get all these different points of view that are extremely important.”

Portraits by Natalie Montaner

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