Tapping the Power of Patients

Dr. Nigel Key during a visit to China

Hematologist Nigel Key’s involvement with World Federation of Hemophilia (WFH) programs around the world has taught him an important lesson: the power of patients to improve hemophilia care.

“Frequently the impetus for change in many countries does not come from physicians but the patients,” he says. “Physicians may often, knowingly or unknowingly, support the status quo.”

Patient power was dramatically demonstrated to Nigel a decade ago, when he first visited the newly independent Republic of Georgia. At that time there was little or no access to factor concentrates, few hemophilia patients were diagnosed and the government lacked serious commitment to improving hemophilia treatment.

“People were suffering unnecessarily from severe but preventable orthopedic complications,” says Nigel. “I remember visiting the coagulation laboratory at the National Institute of Hematology in the capital, Tbilisi. There were two women standing at a rickety table and not much else to assist them in their work. They didn’t have any of the necessary reagents. There was a feeling of powerlessness.”

Patient frustration with the government in Georgia resulted in a widely publicized hunger strike, led by the then president of the national hemophilia organization, the late Temuri Golidjashvili. That was a turning point, according to Nigel.

“It was a risky thing to do back then in 1999. But it started things moving for government support of a national hemophilia program. Former WFH president Brian O’Mahony packed his bags and rushed over to lend his support. He helped the people to negotiate improved care. It was a very poignant show of solidarity from the WFH.”

Nigel has since returned to the small Caucasus republic as part of a WFH Twinning Program and he’s found conditions much improved.

GAP visit to China. From L–R: Dr. Koon-Hung Luke (Canada), Pam Hilliard (Canada),Robert Leung (WFH), Kui Xing Li (China), Dr. Nigel Key (WFH), Dr. Yongqiang Zhao (China), Dr. Bruce Evatt (USA), Claudia Black (WFH), Dr. Man-Chiu Poon (Canada), Dr. Lixia Chen (China), Dr. Baolai Hua (China)

“Patients are no longer passive victims. They now have access to accurate diagnosis and reasonable amounts of clotting factor. It’s very gratifying to see that the physicians have become totally engaged and enfranchised. They’re leading the program and advocating for their patients. I had a lot of personal satisfaction from twinning with the Republic of Georgia.”

A medical practitioner since 1981, Nigel is director of the Harold R. Roberts Hemophilia Diagnostic and Treatment Center, at the University of North Carolina Hospital, Chapel Hill. The multidisciplinary center treats about 400 hemophilia patients from around the state.

As a member of the WFH Executive Committee, Nigel recently traveled with a delegation to mark the beginning of the Global Alliance for Progress in hemophilia (GAP) program in China. That country’s large area and population have meant a change in his role.

“Twinning with countries like Georgia and Armenia involved on-the-ground work such as setting up a lab and lobbying the government. However, China has a population of 1.4 billion and an estimated 100,000 people with hemophilia spread across an area of more than nine million square kilometers. That makes it a whole different ball game.”

“Apart from the scale of the project, China’s biggest problem is the limited availability of clotting factor, and they still have a long way towards getting all patients registered.”

In response, Nigel is working with Canadian doctors, Man-Chiu Poon and Koon Hung Luke, who have worked to develop a network of hemophilia centers in six major Chinese cities over the past decade. They’re also looking at a multi-million dollar program, in partnership with a pharmaceutical company, to set up an additional 20-30 hemophilia centers. “My role is now more strategic,” he says.

Nigel’s strategic view is also concerned with the future skills and availability of hematologists.

“It can be hard attracting trainees in developed countries into coagulation medicine, including hemophilia care,” he says. “There’s a perception among some trainees that it’s all been done in hemophilia and the challenges are not as great as in other areas of medicine. I’d like to see an international internship program started that would send more trainees to developing countries.”

“It’s a great eye opener to witness how hemophilia treatment is applied to the majority of the world’s population. We’ve brought trainees from developing countries to our centers. We should do more the other way. It makes you a better physician in your own country.”

Read more about WFH’s Twinning Program

View videos about recent twinning experiences

Read more about the GAP program in China.

April 2010