Bringing Cancer Treatment and Education to the Central Plateau
By Laurie Schleimer
Peter-Gens Desameau, the Zanmi Lasante social worker, goes over cancer information with a patient. Photo by Laurie Schleimer.
When you ask patients on the oncology ward at the University Hospital in Mirebalais, Haiti, to answer the question “What is cancer?” this is what they say: “Vreman, mwen pa konnen.” Honestly, I don’t know.
Patients will say it’s a disease that kills you. A disease that can’t be cured. They tell you, the only thing they’ve heard about cancer is that it’s serious and it’s deadly.
Scientific breakthroughs in recent decades have dramatically reduced cancer mortality in countries where treatment is readily available. But these advances haven’t made it to the world’s poor. Developing countries suffer 70% of global cancer deaths, but receive only 5% of the world’s resources dedicated to fighting cancer, according to the World Cancer Report 2014 compiled by the International Agency for Research on Cancer. In Haiti, only a handful of oncologists serve the population of 10.2 million, most of whom practice in the capital Port-au-Prince and charge prices few patients can afford. As a result, for many patients, cancer is tantamount to a death sentence.
In 2011, the Dana-Farber Cancer Institute and the Harvard-affiliated Partners in Health joined forces to establish the first cancer program in Haiti’s Central plateau, seeking to bring the benefits of modern medicine to those who need it most. Hundreds of patients have since made their way to the University Hospital in Mirebalais for treatment, many traveling long distances at great personal expense.
I was first introduced to the PIH/Dana-Farber global cancer team via a 9 a.m. conference call during my first month of medical school. An email was circulated to the team with consult sheets, pathology reports and pictures of breast cancer so advanced it made me shudder. Then, over a crackling long-distance connection, Dr. Ruth Damuse began presenting her patients in Haiti to oncologists from the best hospitals in Boston who are helping to supervise their care.
In June, I traveled to Haiti in order to carry out a project developing educational materials for these patients. I joined an ongoing collaboration between the non-profit Global Oncology (GO) and design firm The Meme that aims to produce and disseminate low-literacy educational materials to cancer patients in low-resource settings worldwide.
GO had worked with providers in Rwanda and Malawi to develop a booklet called Cancer and You with information about cancer and chemotherapy. My role was to bring Cancer and You to Haiti, conduct the first formal evaluation of its effectiveness as an educational tool, and help the providers at Mirebalais implement it as part of routine patient counseling.
I partnered with the oncology social worker, Peter-Gens Desameau, to conduct interviews and focus groups with more than thirty patients. We listened to their stories; we showed them the booklet and asked what they thought. We sought input from the providers themselves and used the results to make recommendations on how to make Cancer and You even better.
Most patients at Mirebalais have never known another cancer patient, much less a cancer survivor, when they receive their diagnosis. When you ask patients what they’ve learned since they’ve come to Mirebalais, many will say that they learned that cancer has treatment.
“For a long time I thought that when a person gets cancer, they’d die regardless,” said one patient. “At Mirebalais I learned that I have a chance to be cured. There’s a treatment they give called chemotherapy. If I take this treatment, and I don’t miss any appointments, I have a chance to be cured.”
A view of the neighborhood. Photo by Laurie Schleimer.
Laurie Schleimer is a graduate of Brown University and member of the Harvard Medical School Class of 2018. She received a grant from the David Rockefeller Center for Latin American Studies to support her work with cancer patients in Haiti during the summer of 2015.