Glenn Pierce, MD, PhD was elected as VP Medical for the World Federation of Hemophilia (WFH) at the WFH 2018 World Congress this past May in Glasgow, Scotland. In this article, Pierce talks about the goals and challenges of his new role.
Why did you decide to run for the position of VP Medical on the WFH board?
I decided to run for VP Medical because I thought my combined experiences in drug development, humanitarian aid work, and a childhood with hemophilia without benefit of adequate treatment give me the experience for—and commitment and passion to—the WFH’s goal of Treatment for All.
What makes you pleased to have been elected to the position?
I appreciate the vote of confidence our national member organizations (NMOs) gave me. This is the first time a medical person with primarily scientific experience, and a person with hemophilia has been elected as VP Medical. This is a time of unprecedented research that is changing how hemophilia is treated in the developed world on almost a yearly basis. We need to understand the implications of these changes, and, more importantly, we need to know how to translate the impact of advancements—including those in gene therapy—to the realities of less resource wealthy nations.
What qualities do you think a VP Medical should have in order to be an effective member of the board?
The VP Medical needs a global perspective. While most of the pharmaceutical companies selling products in our space focus almost entirely on the developed world—and to an extent ignore the developing world—hemophilia and other bleeding disorders continue to cripple and kill many thousands of people. It’s no longer enough to say there is no money to pay for these life-saving drugs. Rather, we need to think of creative ways to address the disparity in treatment. The WFH Humanitarian Aid Program is one way. More education and training on everything from lab assays to advocacy help build the infrastructure for more case finding and the improved management of bleeding complications. A VP Medical should push these agendas to improve care for all individuals with bleeding disorders globally.
What is the one thing you feel you must achieve during your 4-year term as VP Medical?
During my 4 year term, I plan to continue to develop humanitarian aid, not only for the sake of immediate treatment for many affected in the developing world, but to prepare hemophilia treatment centres (HTCs) and patient advocates in as many countries as possible for a cure for hemophilia through gene therapy.
You were very involved in Humanitarian Aid as a Medical Member on the WFH board. How do you plan on continuing that work as VP Medical?
Our WFH Humanitarian Aid Program should continue to do what it is doing under the leadership of Assad Haffar, MD, the WFH director of Humanitarian Aid. We need to continue to collect metrics demonstrating the value of treatment versus no treatment, and publicize those results. When I was developing the first extended half life clotting factors several years ago, it became clear at both Biogen, and its partner SOBI that we had a moral imperative to contribute product to nations that could not purchase it for their patients. Thus, importantly, we need to work to change the fact that while some companies have made substantial commitments toward supplying humanitarian aid, others simply have not. I find this situation unacceptable and I call upon our global community—especially those patient advocates and health care providers in resource rich countries who purchase these products—to speak up for change. As a community, we absolutely can effect change if we decide providing treatment to individuals in the developing world is important enough.
You were also part of the WFH World Bleeding Disorders Registry (WBDR) project. How will your experience with the launch of that endeavour shape your work as VP Medical?
The WBDR is important for this reason: if we don’t know what kind of care is being provided currently, how can we design education and training to improve it? It doesn’t matter if we live in resource rich or resource poor countries, there is always room for improvement in care. The WBDR is designed to identify patterns of care within countries, between countries and between regions, to help us better target education and training. This will be a wonderful resource as it accumulates real world data over the coming years and gives us clear perspective on where resources should be focused.
What is the first project you will be working on as VP medical?
In all volunteer-based medical and patient organizations, there is always more work to be done than can be done, so we have to prioritize. Encouraging a comprehensive approach to the Humanitarian Aid Program, including training on the complications of bleeding disorders and using outcome measurements to demonstrate the value of the program will pave the way for transitioning to gene therapy in the years to come. And the pharmaceutical companies who have actively refused to contribute product need to step up and participate—it is our collective responsibility to reduce the disparity between the “haves” and the “have nots.”
Is there anything you would like to say to the bleeding disorders community as you’re transitioning into your new role of VP Medical for the WFH?
As I travel to many countries with resource constraints, I am struck by how nothing has changed there since my childhood for those living with bleeding disorders today, and the cold truth is that it’s quite rare to find a person with severe hemophilia my age in the developing world. We have the technology to impact this terrible situation.
We have made some progress in our goal of Treatment for All, but there is much more to do to alleviate the pain, suffering and death related to bleeding disorders in every country across the globe. Collectively we need to prioritize and focus on a few big ideas.
To read Glenn Pierce’s answers to Alain Baumann’s “Q&A with WFH leaders” questions, please click here.