At the EAHAD 2020 Congress, in The Hague, Netherlands, we honoured professionals who have made exemplary contributions to the haemophilia and allied disorders community in Europe and around the world with the EAHAD Recognition Award for Outstanding Contribution to the Haemophilia and Allied Disorders field. One of the recipients is Mr Brian O’Mahony, Chief Executive Officer of the Irish Haemophilia Society. We took the opportunity to interview Mr O’Mahony on his background, his views on the current access to treatment for people with haemophilia, as well as the role of the patient haemophilia community in the age of new treatments.
Could you share with us some of your early memories living with haemophilia B? How was your everyday life as a child, teenager or young adult?
The first thing I would like to say is that I have no idea how it’s like to live without haemophilia!
Haemophilia becomes your normal. There was quite an extensive history of haemophilia in my family. My mother had four brothers and all of them had haemophilia B. She had four sons and all of them had haemophilia B. In fact, I would have had two older brothers, but both died from bleeding, so I actually have one surviving brother with haemophilia B who is younger than me.
Childhood was difficult because I grew up in an era when there was no treatment. If you got bleeds, the treatment consisted basically of bedrest, ice, compression and elevation. During my childhood years, I probably had 20 or 30 bleeds per year. Teenage years got easier because, at the age of 14, I had my first ever exposure to factor concentrate and for the next couple of years I was treated with plasma on demand.
Just to put childhood into perspective, from 14 to 17, if I had a bleed, I would take a taxi and then a train to Dublin – 300 km from my hometown – and go to the hospital for a plasma infusion. Having to go back to my town, the whole process took basically around 10 hours. And this was an improvement compared to my experience with treatment in childhood.
When I moved to Dublin to go to college at the age of 17, I started to have access to home treatment, which was hugely beneficial. Of all the changes I have seen in my life with haemophilia – from no treatment, to early treatment with plasma, to home treatment with plasma-derived factor concentrate, to recombinant, to extended half-life – the availability of home treatment was the single biggest improvement. It meant you could treat a bleeding episode quickly and early, and hopefully avoid greater damage.
Childhood and teenage years were tough. But I adapted very well, and I put a lot of my competitive instincts, which otherwise would have gone solely into sports, into my academic work and some sports activities.
What made you want to be actively involved in the community initially?
In 1982, I completed seven years of studying biochemistry and had been married for 1 year. My uncle was on the Board of the Irish Haemophilia Society. He asked me to join the Board for one year. Being young and with a science background, I had the profile they needed. I got involved for one year and my uncle promised me it would be no more than two years max. That was 1982 and I am still there!
I got involved initially just to give something back to the community, to make a contribution. I did not plan to stay for more than two years. That changed with the blood scandal with HIV in the 80s. I was very fortunate, having haemophilia B, to have escaped this, but I was appalled by the fact that so many other people with haemophilia, so many of my friends were impacted by HIV. I was equally or even more appalled by the negative and very slow reaction by the government and the authorities in providing help.
I just wanted initially to give something back to the community, but the impetus that made me stay was that strong advocacy was very much needed to help deal with the contaminated blood situation.
You are the Chief Executive Officer of the Irish Haemophilia Society and the past President of the World Federation of Hemophilia and the European Haemophilia Consortium, a leading voice for the needs of people with haemophilia.
What gives you the incentive to continue today? Has your perspective changed as the years went by?
I have been involved with the Irish Haemophilia Society since 1982. I was one of the people who attended the first EHC meeting in 1989. I also spent ten years as President of WFH. I have been involved on Irish, European and global level.
What gives me incentive to continue? There still is so much work to do. We have only scratched the surface. When I started as WFH President, 26 years ago, it was felt at the time that 80% of people with haemophilia globally did not have access to care. That is now 70%. So, it has taken us 26 years to make a difference of 10%. There is still a huge amount of work to do nationally, regionally, globally to improve access to care, to build up the strength of this community.
My perspective has changed. I started thinking how I can help the community become stronger in Ireland. Then, I realised we needed to find ways to better the situation on a global level. We needed to find ways to deal with the impact of economics, the impact of government, the impact of advocacy, the fact that some have access to treatment while others do not, being born in one country or continent and not another, the unfairness of the world in general.
There is more work that anyone can do in their lifetime.
Could you share with us a defining moment in your career? How did you feel when it happened?
One defining moment goes back to 1989 and the elections in Ireland. In 1988, given the scale of devastation caused by HIV to the Irish community, we had sent proposals to the Ministry of Health to provide an emergency fund, to help people in a timely and efficient manner. It was a very reasonable, very well-thought out request. It was ignored.
It was ignored for several months, until we started a media and political campaign, which took off, developed a momentum of its own and went all the way to a vote in the parliament. The government lost and called an election because of that. We eventually ended up getting the help that we needed for our members, but it was a seminal moment for me.
It demonstrated that you must understand what the issues are, you have to be passionate about them, but you also need to be able to advocate effectively. Making a reasonable case in writing does not get you anywhere unless you can back it up with effective advocacy. I realised we would not change things at any level without strong advocacy.
You are quite active on Twitter. How much do you think social media have changed the way advocacy works?
Social media have added an additional dimension to advocacy. It has also increased the speed of which information flows. There is an immediacy now. If you put something out there, you don’t wait for the newspaper the next morning or the TV news that evening.
It has definitely increased the speed at which we work but it has also made it harder to filter information, because for any one good social media source, there are nine that are wrong, misleading or, at best, irrelevant.
It is also frustrating that so many people post about even the most mundane parts of their lives. If you are going to be active on social media, you need to carefully select who you are following. Mike Makris for example is someone worth following because he puts out very good scientific information and he refers his followers to new publications.
People need to be careful how they use social media. It is a tool. By itself it’s neither good nor bad. It’s what we do with it that matters the most.
What do you think are the key issues for people with haemophilia regarding access to treatment now that we entered a new decade?
The haemophilia landscape has changed remarkably in the last five years and will change even more in the next five years. We have a lot of innovation, a lot of new products and types of treatments. That is very exciting. But that in itself does not give you access to new treatments.
Access will require good advocacy. Every haemophilia society must be able to advocate for the treatments and care that they want. They need to have the skills, the tools, the data and the argumentation to support what they want. This is really where organisations like the EHC, EAHAD, and WFH come in to provide that kind of information.
Access will also require affordability. Countries should look if their health systems provide haemophilia treatments and medications that are effective and efficient. Ideally, they should purchase on a national level and not on a hospital level, with the involvement of haemophilia expert clinicians and key patient leaders in the procurement process.
Do you have any advice for the younger generation of people with haemophilia?
Haemophilia treatment has become so much better that, for children with haemophilia, their lives are going to be normal. For young men, their quality of life will be normal. They have the opportunity to put life first and haemophilia second.
They can now do what they want to do with their lives, but they must know, understand and control their haemophilia. Even with really good therapies, they must come forth and become the new leaders of the haemophilia community.
My advice is this: Live your life, deal with your haemophilia positively, but realise that if you want continued access to safe and effective treatment and care, that is something that needs to be advocated for.
You have to come forward, to contribute yourself to step up to the plate for a better future.
Last question: Outside of your work, what gives you the biggest sense of accomplishment?
I take immense pleasure from the friendships and relationships that I made in our community. You may be involved in the national, regional or global level, but it all comes down to the personal relationships you have built and having empathy for those around you.
I also enjoy understanding things fully, which is why I enjoy reading about history. You can not properly plan for the future if you do not understand the past.