Canavan deaths in his family prompt Josh Greenberg to work to save lives in Uganda.
Christine Snyder Special to the Jewish News
By the time he was 10, Josh Greenberg had already witnessed the death of his brother and sister to a horrible genetic disease.
Canavan strikes infants, typically those with Ashkenazi Jewish ancestry like the Greenbergs, according to the Canavan Foundation. It is a fatal neurological disorder caused by the lack of an enzyme that causes myelin in the brain to break down, preventing the proper transmission of nerve signals. There is no cure and most children do not live past age 10. Greenberg’s brother died at age 11 and his sister passed away at age 16.
The Canavan Foundation said it is estimated that 1 in 40 Ashkenazi (German and Eastern European) Jews is a carrier of the Canavan gene. Before they conceived, Josh’s parents, Dan and Debbie, were tested for the Tay-Sachs gene, but there was no testing at the time for Canavan.
Greenberg, from a very young age, viewed the manifestation of poor health and the devastating effects it could have on a family.
“It was a huge struggle just in trying to get the diagnosis,” he said. “There was a physician who called my mom a neurotic first-time mother and said, ‘Your son is perfectly healthy,’ despite him displaying some developmental delays. She had her maternal instinct, but she also was an occupational therapist who worked in early childhood development, so she clearly had some knowledge. Just to be written off like that when you know something is wrong and you’re trying to get a diagnosis is devastating.”
Interested in saving other families from the same heartbreak they endured, the Greenbergs started working with a geneticist from the University of Illinois who was interested in Canavan research. The Greenbergs spearheaded an effort for the Canavan Registry, a global database that provided him with blood, tissue and urine samples for his research.
The geneticist eventually identified the genetic mutation for Canavan and developed prenatal testing and carrier screening. Unfortunately, he then went on to patent the gene and began charging royalties, which severely limited free testing for women. A lawsuit was later settled that ensured testing could continue, Greenberg said.
“I take a great deal of pride in my Jewish identity,” said Greenberg, who attended Hebrew school at Congregation Am Echad in the south suburbs of Chicago, where he grew up.
For a long time, the 29-year-old wanted to be a biomedical researcher, but his family’s experience widened his perspective and helped him realize that health is about more than science — it’s about who has access to science and the policy behind science.
The Journey Begins
Greenberg’s interest in global health, combined with his unique medical and economic background, makes him perfectly suited for a humanitarian effort. So, when the opportunity presented itself during a chance meeting in 2008, while he was still an undergraduate student at Duke University, he seized it.
Through a mutual friend, he was introduced to Benon Mugerwa, a Ugandan physician who shared the tremendous health needs in his country. Mugerwa ran a private hospital with its own outreach branch. Greenberg was instantly intrigued, so, along with a group of other Duke students, they stayed in touch with Mugerwa, collaborating on the project and leveraging university resources to generate the seed funding needed to take action.
Shortly after graduating from Duke with a self-designed major in Global Health: Access, Innovation and Effectiveness, Greenberg co-founded Progressive Health Partnership (PHP) with fellow Duke student Eddie Zheng and Jordan Bateisibwa, who continues to serve as the current director of programs in Uganda. PHP is an organization devoted to breaking the cycle of poverty and the burden of poor health resources in the East African nation of Uganda. It focuses primarily on providing safe maternal care in a rural region.
“Uganda really chose me,” he said of the PHP. “There was just something on my mind about global health and inequality, and I wanted to do more.”
PHP focuses on three pillars: Service, research and advocacy. It serves the hard-working residents in the neighborhoods of Kashongi and Kitura, who provide for their families through peasant farming. However, the strain from poverty is visible throughout the small communities.
Houses constructed from mud or cow dung with a corrugated iron sheet or banana fiber roof line the streets. Residents struggle with safe drinking water and agricultural productivity. Many are ill from malaria or HIV/AIDS, yet lack transportation to get to medical appointments. Even when they do receive health care, prescription drug and health worker shortages are commonplace.
Healthy moms, healthy babies
PHP established the Omukazi Namagara Program, which stands for “the woman is life” in the Runyankore language. Its focus is on public health, specifically maternal care.
“For us, maternal health is where everything starts,” Greenberg said. “Everything intersects with pregnancy in terms of medicine, in terms of social issues, in terms of family issues, in terms of economics and in terms of education, not just health. It’s where it all begins in the womb.
“We bring a systematic, rigorous, but adaptable approach to community development. In this program, we are working with the government on several different levels to strengthen maternal neonatal health services spanning prenatal, intranatal and postnatal. We are really trying to develop a continuum of care,” Greenberg said.
To date, PHP has been successful with installing solar panels for added lighting and stocking supplies for prenatal and delivery care. Up until this time, pregnant women were expected to bring supplies with them to the delivery room.
In addition, the organization instituted a Village Health Team consisting of 26 community health members who conduct at-home health checks before and after delivery. They are trained to know when to refer families to needed services.
The Journey Continues
Because of what he observed in Uganda and experienced during his childhood, Greenberg continues his educational path. He is currently in the sixth year of a joint M.D./Ph.D. program at the University of Michigan. He has completed two years of medical school and is going into the fourth of five years of economics Ph.D. work. Afterward, there will be two more years of medical school followed by a residency, likely in a primary care area.
These types of degrees are a rare and impressive accomplishment. According to Greenberg, he will be the first to achieve it in economics at the university and he believes the 10th in the country to earn these two degrees.
“I’m very interested in viewing these problems holistically. My academic studies are designed to bolster the work of the organization,” he said.
Through his dissertation project, Greenberg plans to conduct an economic analysis of where he ultimately wants to take Progressive Health Partnership: Political rights and political accountability.
“The crux of the project I am hoping to get off the ground for my research is essentially town hall meetings between citizens and local political leaders in Uganda to discuss the quality of local health services and focusing on the role of political leaders in assuring quality health services in these communities,” he said. PHP works in partnership with national, district and local governments to strengthen public sector health services. With a limited budget of $80,000, the organization has been making strides in the areas of maternal health care.
Since 2013, Greenberg estimates PHP has helped with more than 5,000 pregnancies. Prenatal care visits have doubled and there has been a 50 percent increase in deliveries that take place in the facilities. Funding is a serious problem, but PHP, he says, has made a long-term commitment in Uganda. To donate, go to proghealth.org/act-now.