August 9th, 2016
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Today we will conclude our Interview Series about Dr. Brian O’Mahony, the Chief Executive of the Irish Hemophilia Society and former President of the World Federation of Hemophilia (WFH). After introducing his early life in our first article and emphasizing his roots of becoming a world-known advocate in the second article, our last article of the series will emphasize the challenges for today’s new generation of advocates that Dr. Brian O’Mahony explained to us.
During our interview O’Mahony held an emotional plea about the importance of young advocates for the World of Hemophilia. He emphasized the opportunities young people have to make an impact when they receive appropriate training, guidance and opportunities through programs such as SURO or AFFIRM. At the same time, O’Mahony was clear on today’s problems and challenges regarding the new generation and that weak hemophilia organizations, due to complacency, can lead to dangerous developments in the treatment of patients worldwide. Take a look at Dr. Brian O’Mahony’s clear statements:
Frankly.net: What are the biggest challenges or obstacles for advocacy today?
Dr. O’Mahony: I suppose the biggest obstacle is complacency. In many of the Western European countries, hemophiliac care is very good. And people think I don’t really need to be involved. There is a paradox where we say to young men, take your prophylaxis, get on with your life and put hemophilia second. And that’s absolutely the correct thing to do. But on the other hand, we also need them to get involved in the national organizations. You cannot assume that even what you currently have will hold, if you don’t have good leaders coming through. I don’t think we can assume that just because there’s good hemophilia care now, that that will always continue. Healthcare budgets are competitive. If hemophilia isn’t pushing hard, somebody else will push hard and take that budget for another condition.
Frankly.net: How do you see the priorities in advocacy today?
Dr. O’Mahony: I mean even within Europe, there are still countries who are using less than one i.e. per capita, where there are other countries using eight or nine. So there’s still a big difference within the E.U. even, between the highest and lowest use of factor concentrates. And on a global scale there are a lot of countries where there are deficiencies in care. So there’s still a lot of work to be done at a very basic level. On the other hand, you’re also living in a world now, where I think the next five years are going to see more change than we’ve seen in the last 30, in terms of access to hemophilia treatment options. What we have to make sure of is that these treatment options are not only available to a small number of patients in the wealthier countries. You also have a situation now where, following the global financial crisis the last number of years, the influence of health economists on healthcare is greater than ever. So in the past when you were advocating for hemophilia, you always needed good data and you needed good argumentation and good negotiating skills. Now to that you have to add the ability to understand economic concepts.
Frankly.net: How can young readers of Frankly.net have the biggest impact possible?
Dr. O’Mahony: By getting involved nationally on their board. I think what programs like SURO and AFFIRM should do is up all of you to the point where you could and should be trying to get onto a national board. The decisions are made by the people in the room. And the people in the room, when it comes to decision-making in hemophilia, are the national organizations, the key doctors, the government and the paying authority. So I think if you want change, you have to go into the organizations and change from within if you want to improve things. And every generation should be impatient. Nobody in their twenties should be able to look at the current situation and be satisfied with that.