Over 50 MPN patient advocate groups from around the globe congregated in Prague, Czech Republic, this August. The purpose was to share best practices, learn about what is going on in MPN research and also what issues patients in their countries are grappling with.
We learned a lot about struggles and triumphs globally. The problems don’t all offer easy or clear solutions, but we are stronger as a community just being aware of the struggles of our peer groups around the world. When we get in a room together for a few days we learn from each other and get better at being the best advocates for people with PV, ET and MF. The triumphs are in advocates getting organized, starting their own organizations to promote education or research for people with an MPN. Some are a few years into their journey, such as MPN Alliance Australia and Ruby Red Foundation others just getting started like the Canadian MPN Research Foundation, Param in India and Maricres in The Philippines. Some are funded by the government through taxes on insurers, and others on the kinds of philanthropy and grassroots connections that we rely on in the United States.
We were reminded by Dr. Ruben Mesa’s presentation of the Landmark data that all people with PV, ET and MF, regardless of where they live, are concerned about progression. We also heard that patients globally are focused on improving or keeping their quality of life while living with an MPN, managing their co-morbidities and, if they are of child-bearing age, concerned about how to manage their MPN during that time.
But there are concerns that are not universal and which are quite difficult to grapple with such as access to any kind of medication at all for MPNs. We heard about issues preventing even Hydroxyurea or Pegasys from reaching those who need it, as well as Ruxolitinb. If people living in a certain country cannot access even a relatively low cost drug such as Hydroxyurea, how are they ever going to realize the benefits that may materialize from an immunotherapy breakthrough? And in the case of Pegasys, some of our peer groups globally have easier access now, but a concern we all share is on whether access to Pegasys will simply disappear when Roche stops manufacturing it. It could be that Ropeginterferon will be approved as an interferon that is an official indication for MPN, but that is not yet assured and we are all anxious about the future.
The specific stories from individuals representing each country is theirs alone to tell. We will share them if they want us to, but it is clear that this convening of MPN advocates globally was needed. We may not be able to solve everyone’s problem, but we can at least begin to define them in hopes of one day having a global MPN community that truly answers to every single person with PV, ET or MF’s needs. Through expanding our understanding of the global realities of living with an MPN, we can start to speak with one voice and fight for the best life possible for those with an MPN.
