By Lori L. Ferguson
Venee Tubman, M.D. ’06, is a woman on the move. On the day we spoke, she was running to catch a plane, and in the early fall, she departed for one of the several annual visits she makes to Liberia, where her parents were born and where she now serves as a volunteer physician. As a pediatric hematologist/oncologist at the Cancer and Blood Disorders Center of Dana-Farber/Boston Children’s Hospital and an instructor of pediatrics at Harvard Medical School, Tubman is also in constant motion professionally. In addition to treating pediatric patients in the United States, she has made a firm commitment to changing the health-care landscape for children in Liberia. Her focus is chronic illnesses, particularly sickle cell disease (SCD), which disproportionately affects children in sub-Saharan Africa. There, survival for children in low- and middle-income countries from birth to age five is 10 to 50 percent, compared to 95 percent for children in this same demographic in high-income nations.
One need only look at the statistics to understand Tubman’s sense of urgency and commitment. Today, in the State of Massachusetts (population 6.7 million), approximately 250 babies are born with SCD each year; in Liberia, with a population of 4 million, 1,500 babies are born each year with the disease. To compound the problem, when Tubman first returned to her parents’ homeland in 2008, there were only 50 practicing physicians serving a country of 4 million people. “Once there,” she says, “I realized that I had an incredible opportunity to explore global health and health care in a resource-limited environment and really make a difference.”
Since that first trip in 2008, Tubman has dedicated herself to combatting the devastating impact of undiagnosed and untreated sickle cell disease in Liberia. She began her work in the capital city of Monrovia. Working as a consultant from Liberia’s national referral hospital, the John F. Kennedy Medical Center, Tubman has been collaborating with local practitioners and international partners to establish screening protocols for sickle cell disease in newborns and to create long-term treatment programs for those affected with the disease. Since launching the screening initiative in 2012, Tubman and her colleagues have screened 5,000 newborns and are providing continuing treatment for between 100 and 150 children. Within the next five years, her aim is to offer screening for 25 to 30 percent of infants born throughout the country – no small feat given that, at present, 40 percent of Liberian infants are not even born in a hospital. As she says unabashedly, “I’m a goal-oriented physician.”
The Impetus
Tubman’s passionate commitment to health care in Liberia is deeply entwined with her heritage. Her grandfather, William Tubman, was the country’s 19th president and its longest serving; he occupied the office from his election in 1944 until his death in 1971. Tubman was just an infant when her family fled the country for the U.S. following the military coup in April of 1980. It wasn’t until 2008 that it was safe for her to return. But despite the distance between Liberia and the northern Virginia suburbs where she was raised, Tubman says that she never felt far from her family’s roots. “There was a large expatriate community in the region,” she says, “so Liberian culture was a constant in my life as I was growing up.”
There are no doctors or health-care providers of any kind in Tubman’s family, she says, but as a young girl she was captivated by science. “My family fostered that interest,” Tubman recalls, “and when I attended a magnet school in high school, my teachers offered further encouragement.” Tubman excelled at her studies and entered Harvard as an undergraduate, majoring in chemistry. It was here that her interest in hemoglobinopathies – a group of blood disorders and diseases that affect red blood cells, including sickle cell disease and thalassemia – was born.
During an advanced chemistry course her senior year, Tubman became intrigued with the ways in which modifying hemoglobin would affect sickle cell disease. An inherited blood disorder that primarily affects children of African descent or Hispanic and Caribbean ancestry, it can also be found in those with Middle Eastern, Indian, Latin American, and Mediterranean heritage. “I was fascinated to be in a space where I could consider the biochemical properties of this disease as well as its pathophysiology, which directly impacts the patient’s quality of life,” she says. “I found that combination very powerful.”
Tubman’s fascination with sickle cell disease increased as she read about the challenges of the disease as well as the difficulties in managing it. “Sickle cell disease was initially described in 1949,” she notes, “yet over six decades later, we still haven’t made a great deal of progress in treating the disease.” The reasons for this delay are complicated, Tubman notes. The disease has been found to be much more complex than initially described and research into SCD is historically underfunded relative to the number of people afflicted. “I quickly realized that I had a real opportunity to work on a problem and have an impact.” The hook was set.
After graduating from Harvard, Tubman entered Penn’s medical school, where she began to cultivate a complementary interest in global health care. Following her third year, she did a rotation on the Navajo Indian Reservation, then worked in Botswana with Stephen J. Gluckman, M.D., G.M.E. ’76, a professor of medicine, a specialist in infectious diseases, and medical director for Penn’s Global Medicine program. Tubman also spent time in Guatemala during her residency at Boston Children’s Hospital, learning Spanish and broadening her understanding of the issues in global health. “Global health experience was not widely available,” she observes, “and Penn was in the vanguard in allowing students to go abroad and gain this sort of experience.” The cumulative impact of these experiences heightened Tubman’s interest in providing medical care in Liberia. In 2006, following her graduation from medical school, she reached out to a family friend in Liberia and expressed her interest in working in the country. “He wrote back immediately and said, ‘Come – and don’t leave.’”
Dr. Roseda Marshall, chair of Pediatrics, leads bedside rounds at John F. Kennedy Medical Center in Monrovia.
The Mission
And so Tubman went, travelling to Liberia for one month in 2008 as a volunteer physician. At the time, there were no fully trained pediatricians working in the entire country, so she found herself, as a junior resident, in the somewhat unnerving position of having more formal pediatrics training than any other practicing physician in the country. But she persevered, recognizing that the country’s pressing need for health care also afforded physicians and researchers great opportunity. “Sickle cell disease is highly heterogeneous,” Tubman points out, “so it’s very helpful to researchers to have such a large patient population to work with.” In the U.S., considerable progress has been made in extending life expectancies of those suffering from sickle cell disease – on average, adults live into their 50s and 60s. But in sub-Saharan African, life expectancies for those with SCD really only extend into the teens. “For a physician committed to improving the quantity as well as the quality of life, Africa is a good place to start,” Tubman says. “I realized I had a great opportunity to explore global health and health care in a resource-limited environment. Under such circumstances, we stand to learn a lot about the disease and as a result improve the quality of life for people with SCD the world over.”
Although Tubman was enthusiastic about the task before her, she is also a realist. She knew that the newborn screening process would have to be broached carefully and in stages, due to the stigma and surfeit of misinformation surrounding the disease in Liberia. “A lot of families believe that there’s nothing they can do if their child has sickle cell disease,” she points out.
“Some mothers are told that their children are only ‘half-children’ because they don’t live very long, while others are warned that a spirit occupies their child and will inhabit others in the family if given the opportunity. We have to combat these beliefs as well as the disease itself.”
Tubman and her colleagues began with pre-test counseling of families, giving each mother they interviewed the choice of opting in for screening, rather than the opt-out choice offered to mothers in the United States. As a result of this thoughtful approach, Tubman says, more than 99 percent of the families solicited chose to be screened. “Most parents want to know if their child is affected with the disease and, if so, they want to start treatment.”
By raising awareness of the disease, Tubman was able to secure the support she needed to launch her pilot screening program, an initiative that had not been possible in Liberia prior to 2012 because of a lack of tools for testing. The journey was not easy, Tubman concedes, but she was helped immeasurably by her friend and mentor Kwaku Ohene-Frempong, M.D., G.M.E. ’80. The Ghanaian-born physician and professor of pediatrics at The Children’s Hospital of Philadelphia and emeritus professor of pediatrics in the Perelman School, Ohene-Frempong is also the emeritus director of the Comprehensive Sickle Cell Center and president of the Sickle Cell Foundation of Ghana. One of the world’s foremost authorities on SCD, he is also himself a carrier. “Dr. Ohene-Frempong has been a huge supporter of my work,” Tubman says. When she was in medical school, she heard about his program in Ghana, which began more than 20 years ago. Working with Ohene-Frempong has taught her many things, she explains – the most valuable being the importance of persistence. “He’s helped me to see that if I have an idea of what I’d like to do, then I simply have to power through all of the challenges that arise. And I can tell you that working in global health, there are many!”
Tubman leaned heavily on Ohene-Frempong’s experience and resources to get her fledgling project off the ground, obtaining samples from newborns in Monrovia and shipping them to the laboratory in Ghana that processes Ghanaian newborn samples. The results were then forwarded to Tubman in the U.S., where she reviewed them and then sent them back to Liberia. “It was a somewhat cumbersome process,” she concedes with a smile, “but we were able to accumulate enough samples to demonstrate that sickle cell disease was a real problem in the country. Children afflicted with SCD typically die of anemia or pneumonia, which can be more severe because the children have the disease.”
The results of Tubman’s initial study were compelling enough to persuade PerkinElmer, maker of one of the most common screening instruments used to diagnose SCD, to donate a machine for use in Liberia in April 2014. But then the Ebola crisis exploded. In August of that year, screening for SCD came to a halt. “Thankfully Ebola is now under control,” Tubman notes, “and the silver lining in that horrible outbreak is that there’s now a renewed focus on public health initiatives in Liberia and new logistical mechanisms in place that actually make our job easier.”
Venee Tubman consults with Megan Aitro, a clinical research coordinator at Boston Children’s Hospital, and others.
Now, with a small lab being established in-country and hospital facilities set up to provide care for children diagnosed with SCD, Tubman is eager to resume screening. She admits, however, that identifying those afflicted with SCD is only half the battle. Her next challenge is actually a by-product of the initial screening process and the focus of her next study: treatment compliance. “We’ve successfully screened several thousand infants at this point and have identified between 100 and 150 kids with SCD that we’re treating.” But she reports seeing participation in the treatment program drop off around one year of age—something similar to what’s been witnessed by those running treatment programs for pediatric HIV patients.
The reasons for the drop in compliance are many and quite complicated, Tubman explains, and relate to factors as diverse as age, gender, distance to the clinic, perceived benefits of treatment, and religion. In the next phase of her study, Tubman hopes to interview all of the families of children diagnosed with SCD so far, to determine what factors are preventing them from returning to the clinic for treatment. “We’ve had a number of families who started off strong and then dropped off after about a year, as well as some families who have refused to return to the clinic for treatment at all,” Tubman notes. “Our aim is to identify the factors that make it difficult or undesirable to stay involved with the Chronic Care Clinic and also explore ways of expanding care into the community.”
The Future
Despite these setbacks, Tubman remains upbeat about the progress being made in Liberia’s pediatric health-care programs. Since making her first trip to Liberia eight years ago, Tubman has pushed hard to effect change in the country’s health-care system – not only in the diagnosis and treatment of sickle cell disease, but also in the delivery of health care in general. While the physician shortage in Liberia remains severe, the number of resident doctors is up from 50 to between 200 and 300. There is now a pediatric residency program in place as well. In addition, five full-time pediatricians have been recruited to work in Monrovia, and Tubman is in constant communication with a consortium of hospitals and physicians who send practitioners to Liberia regularly. These consortium physicians support physicians in Liberia by doing volunteer rotations and by offering on-site training to medical students and Liberian physicians. Each attending physician takes a two-to-four-week rotation. They also bring residents, who stay for four to eight weeks. Tubman calls it “a wonderful, bi-directional learning experience for both sides.”
Children and families from the Greater Monrovia area took part in a Sickle Cell Awareness March in September 2015.
The goal for this outreach is not to cure sickle cell disease and other such illnesses in Liberia, Tubman is quick to point out. That’s simply not feasible. Instead, the aim is to build Liberia’s health-care system and increase the number of providers working in the country full time, because they will be the ones to have the longer impact. “I visit the country and see patients for two to three weeks at a time, and while that’s helpful, it won’t change anything long-term,” she says. “Instead, our goal is to train physicians there in best practices as we know them, modeling evidence-based, patient-centered care and helping them to refocus their practice. Those are the measures that will have an impact on Liberians.”
As for her role in combating sickle cell disease and improving health care in Liberia in general, Tubman is realistic yet optimistic. “I remain a dedicated physician and scientist,” she says. “This work has been a huge blessing and it has given me amazing perspective. I’m truly passionate about delivering outstanding patient care and empowering people. I realize that I can’t change the fact of an inherited disease that someone is struggling with, but I can affect the impact it has on his or her life.”
Tubman attributes her drive and determination in part to the many great mentors she has had throughout her life, from counselors in summer programs during high school and college to professors and colleagues who guided her in medical school and beyond. The education and the encouragement she received while in medical school at Penn also played a seminal role. “I got wonderful training while at Penn, and the school really worked with me to help me realize my potential and avail myself of every opportunity that came around.”
Tubman is now paying that generosity forward, not only through her work abroad, but also by mentoring Harvard Medical School students and sharing her knowledge with the public at large through appearances on radio and television. Her efforts are not going unnoticed: last year, Tubman was awarded Boston Children’s Hospital’s 2015 Black Achiever Award, which annually recognizes two exceptional employees for their professional accomplishments and service to the community. “Many people have encouraged me to push myself and pursue my passions,” Tubman says. “They’ve helped me to see my potential, so now I want to do that for others.”