Declan Noone, EHC President

After nine months (appointed October 2019) since being elected President of the European Haemophilia Consortium (EHC), how would you describe your experience in this role to-date and do you have any reflections to share thus far?

The last nine months have been a significant learning experience. From the beginning, I wanted to represent the haemophilia community and what they need. Then a pandemic arrived and it became important to understand patient needs in that new situation as well as right now.

To be honest I had expected to see and handle a slow development of issues as they unfolded, but instead everything happened at once. Take for example home treatment during the pandemic. In countries where it wasn’t already established – and even in countries where it was – required a rethink in terms of home delivery, supply chains and plasma supply – all of this was thrown up in the air. Telemedicine, too, which normally takes time to roll out, in this new world had to be rolled out very quickly.

What was amazing, though, was to see the response from companies, patient organisations and from individual patients. What transpired is a real sense of the community coming together even more closely and getting things done.

My key reflections about the last nine months are: the strength of haemophilia community, the commitment of our patient leaders, and the importance of delivery of care. The big area this opens for the future is how we deliver care in potentially different ways and forms. This could be quite significant in terms of improving the QOL of patients.


Of the many motivations to resign your role as EHC PARTNERS consultant and stand for President, please can you share what it was, looking back to pre-election, that was your biggest motivation?

When I took on the PARTNERS consultant position it was to help to deliver care in countries that had very little and it was to aim to deliver it in ways that made sense, that increased transparency and that ensured patients and clinicians are involved how products are procured.

During that time, I got to work with very impressive patient- and organisation leaders and clinicians, which gives you the inspiration to want to do more in terms of the team that is there and the EHC board. I really enjoyed working with them.

I also really enjoy working with our current CEO Amanda and the Steering Committee are amazing, so that was the biggest motivation to stand for president. And I felt that the next four to five years could bring further changes: they will be about access to treatments in a very different way than we previously thought.

For eastern European countries, we will focus on access in general but with gene therapies and other novel approaches coming down the line, we need to look at access in different way, and I believe my skills can be well-suited to this area going forward.

Why did you choose to undertake an MSc in Health Economics, what was it about the discipline of health economics that inspired you to develop as an expert in this field?

I really enjoy numbers and algorithms, my background is in engineering and when we hit the economic crisis in Ireland and I wanted to get a job, I went for a job at the Irish Haemophilia Society (IHS).

At the time I was already doing a lot of children’s camps as an IHS volunteer and a full-time role with the Irish society was a natural next step for me professionally. After a few years I got introduced to a health economist and I spoke to him and realised I could understand what he was saying, but the family member with me couldn’t and felt it was utter rubbish that you can quantity a patient’s life in numbers. I felt like the interpreter in that situation, and this is what led me down the health economics path, and how I can bring a patient life into a system that boils down to numbers, and do so by capturing what the patient wants and thinks in order to better deliver services.


As President of EHC, you have stated your intention to focus on access to treatment and novel therapies, as well as improvements in comprehensive care for all patients with all inherited bleeding disorders? Are there organisational changes that need to be built into the EHC infrastructure, which are different to the way the organisation is set up today, to enable you to achieve your intention?

In terms of EHC infrastructure probably not, it’s designed primarily as an advocacy organisation both to help with high-level EU strategic direction and to support national advocates/advocacy, so its main infrastructures reflect what we need but the organisation needs to be flexible enough to continue working at both EU and national levels in areas including but also beyond just haemophilia.

In terms of improvement for quality of care, we want to improve access to treatments and therapies, and in terms of comprehensive care this infrastructure will need to change significantly to adapt to the future environment. I believe this will evolve in the direction of hub-and-spoke models, with one centre as the main linking centre and then a branched-out network of other centres. We need to move more towards this type of model as we go toward gene therapy and other novel treatments.

I will also continue to drive for clinician and patient involvement for delivery of care and access to treatments, seeking to understand what patients want and value, and bringing that into a procurement procedure - whatever type that may be.


How important is the acceptance and adoption of real-world evidence in supporting access to treatment and novel therapies and improvements in comprehensive care?

Real world evidence (RWE) is critically important. For example, we have lots of clinical trial results showing that people on FVIII prophylaxis bleed 1-2 times a year whereas RWE puts those bleeds between 0 to up to 8/9/10-times a year. This discrepancy is really not acceptable and we need to understand it. We also need to look at studies for people who have 0 bleeds; if they have 0 bleeds what is their joint status? Do they have chronic pain or issues with daily activity? Understanding this aspect of RWE is very important, and not just from a clinical outcomes point of view, but from the perspective of patient relevant outcomes.

I believe in RWE that is drawn from consistent data collection methods and registries. One thing the EU used to do was to require trials in previously untreated patients (PUP), which needed to be completed before medication was marketed in Europe. While this requirement for PUP trials was dropped, we still need the data in this area and must work to ensure we get access to it.

We also need data on how patients are cared for now and on inhibitors. We need to have a long term-view in order to understand how, the way patients are treated now, will affect them in 5/10/15 years. We need to generate that RWE.

If we understand the story and the path of an individual patient, then we can speak the same language. If we understand how this person is managing in the real world, then we can provide the best care. But, we can only achieve this, if the patient data extends beyond the clinical trial setting.


As a leading voice for the haemophilia community, what does EHC need to enable it to be an effective advocacy organisation?

We have strong, committed leaders and a robust youth strategy that aims to continue that growth and evolution of patient leaders. We need good data and we need to really understand where we want to go with the community. COVID has been very interesting in terms of community action and mobilisation internationally. We would have only seen each other a few times this year, but instead we’ve caught up every few weeks virtually. The EHC will continue to ensure this type of meaningful community engagement, to provide more access to leadership, and with our members’ feedback, to create more effective training that allows us to improve advocacy going forward into the future.


What are the most effective approaches to successful advocacy?

For me it’s data-driven advocacy and training.

Where you want to go should be driven by data and accurate information, and not just from clinical trials, but also from member surveys and interviews with key leaders.

EHC advocacy training is therefore quite comprehensive; it covers not just what the patient advocate needs to be able to do but also needs to know. So we combine content training (such as economics courses) with skills training (such as leadership courses). Our goal is to help advocates of all ages hone their skills at the appropriate level to them, and create the bridge between where they were skills- and knowledge-wise, to where they need or want to go next. That’s the key to improving advocacy.

How important is socio-economic research, to EHC, to support and inform its advocacy mission?

From an EHC perspective it’s probably not as important as it is for a national member organisation. However, the EHC will help members to analyse socio-economic information if needed and then they will look at and address real world access. The key is to work in tandem and parallel, members at a national level and the EHC at a European level, both rowing in the same direction.


As President of EHC, what do you expect to see listed on your ‘to do’ list during next 12 months, and what is on your ‘to do’ list for next week?

In the next 12 months I want to:

  • Understand the impact of gene therapies, the impact of non-replacement therapies, help maintain and/or increase access to treatment and care in a post-COVID context, and understand what has changed in the healthcare space of our member countries. For example, with home delivery services, what worked well or what didn’t, analyse that, and build on learnings;
  • Look at von Willebrand’s Disease (VWD), which is a part of the community that has really struggled for access, and understand how best to advocate for access to better treatment and care. For example, within the European Inhibitor Network we have elaborated 10 principles of care and I would like to see something similar for VWD in next 12 months.

Next week I will be working on the VWD survey, which we ran at the start of this year, and take a broad view of what we can learn from this and all the other work being done globally in this area (e.g. the HCD CVESS study, work from the Canadian Haemophilia Association and others.) And of course the EHC Economics workshop and annual Conference are around the corner, so I’m keeping busy.

Given the challenges of lockdown, what are your ambitions for the permanent office in Brussels and what would you like to see developing in terms of a Brussels presence and activity for EHC?

One of the things we were looking forward to was the permanent exhibition that was being done for the 30th anniversary in the office, I would really like to have seen that done this year. Having that archive of of our collective living history housed in a permanent EHC home offers our community European roots in Brussels,  a place for them to come and – at any point in the future – reassess where they were and where they think EHC needs to go next. I’d really like to bring the exhibition to EHC event venues in the future as well.  It will still happen, we will still launch this; it’s just a matter of time.

Before lockdown, were you anticipating extensive travel as a major and inevitable requirement of your role as President?

I was anticipating a lot of travel; I was traveling a lot before I became president, so I expected to travel even more. Instead, it is the first time in 10 years that I’ve stayed at home to enjoy my house that isn’t due to an injury or surgery.

I do not miss the travel but I do miss having conversations on the ground and discussing and thinking outside the box. I am hoping this will come back to a certain degree in the future.


What would have been the reason for visits to other countries and have any of the necessary changes we have made (e.g. Zoom.) changed your view on the importance of face-to-face interaction? Is travel still something you anticipate being an important part of your role, once the possibility of inter-European and global travel is re-instated?

When we’ve gone to countries in the past, we would have assisted advocacy efforts or sat down and discussed ideas on the best path for improvement of care. In the lockdown I have struggled to ‘get into the room’ with a politician or to get that kind of candid exchange and feedback with national decision-makers; that certainly is easier face-to-face.

On the other hand, a virtual face-to-face through Zoom (or other platforms) can be done easily and quickly, and its great when you need to go through something quickly. It’s also much more efficient than the back-and-forth exchange over email. But it doesn’t work with all stakeholders, so I certainly hope that in the future we can find the right balance between keeping what worked well virtually and continuing the travel, when needed, in a more strategic way.

Big conferences have by and large succeeded via virtual platforms, as well, although there are pros and cons. We can more easily have quick side conversations, for example with clinicians, and follow up has been much quicker (due probably to a lack of travel). The ability to deliver multi-lingual content and reach new audiences is also impressive. But the connections can be easily siloed and there is much lost on a community level when spontaneous – and even personal – exchange gets lost.


How old were you when you joined the Irish Haemophilia Society? What was it that you felt you could achieve, that inspired you to get involved?

My mother joined when I was 3 or 4 years old and I myself joined as at around 17, on a Friday evening when I had no money  and the IHS was between me and a train station, so I dropped in to have a cup of tea and a biscuit, and then I hung around. I enjoyed the conversations and one thing led to another and I started helping with the children’s camp weekends.

In terms of inspiration, Brian O’Mahony has been a huge leader globally and someone to hang out with. and hear stories from. To hear his passion, it’s hard not to be dragged along.

Before lockdown, what was your idea of a perfect weekend, and during lockdown how has that idea changed (if at all)?

Pre- and during COVID, my ideal weekend is effectively the same. Before, when I travelled so much, I’d enjoy having a weekend , working out, cooking or baking, and having a nice time chilling with friends. During lockdown it was the same except the chilling-with-friends part. During COVID I’ve also taken up baking bread more, and making sourdough. In general, because I’m vegetarian, I look for new recipes to make things more interesting, e.g. curries, chillies and making pasta.


What would you prefer, to speak to 1000 people from a live stage, or to speak to the same audience virtually - and why?

To me there’s not much difference anymore, other than that when I finish a talk on Zoom, I go straight back to my own life. I don’t see a difference otherwise:, I still get the same nerves and try and give the best response, either way.