Oct 23, 2018
My name is Iain Armstrong. I'm chair of PHA UK. I do two jobs, I do that part-time. I'm also consultant nurse in one of the large PH centers in the UK.
I've been working in PH now for 20 years. 20 years ago we thought it would be a good idea if some of the patients I had could be put in with other patients by telephone, and from that grew PHA UK, and next year is our 20th anniversary and we've got four and a half thousand members, which is half of the PH population in the UK. It's grown from a good idea into this big thing.
I was involved in PH when we first saw the first oral medicine, bosentan. And that generated (from when I was working the 18 month prior to that), we could diagnose PH, but there was very little else we could do. We could prepare some people for transplant and that was about it.
And then bosentan came along - and there was flolan at the time, but it was very limited. But what we had then was a licensed therapy. So what was really useful was a collaboration with a pharmaceutical company, in which we had a common agenda. With any support group, any organization like that, you need initial support. You can't create from nothing without that mutual support. Then we became bigger stronger. The community has become bigger because of collaborative work, both nationally and internationally. I think that's a really important aspect of PH community work. It normalizes something that makes people feel very alone. The rarity even in the UK, we've got 7000 patients in the UK. That makes it very rare. You feel very isolated because there's geographics and things like that.
What we're doing this year, we've actually tried to be very specific about our PHawareness Week [October 22-28]. So this year what we're talking about is individuals being about to talk with friends and family about PH. The work that we've done over the last few years - even in the close knit loved family unit, it's actually quite misunderstood when people feel quite isolated. Actually, being able to have a narrative story that you can tell and share is very powerful. We're trying to provide materials in which that can happen, but one of the taglines that we are going to use this year is the place the potentially transplant may have PH. Not because it's the common end pathway, but it generates a response from the listener, saying, "I didn't realize it was that serious." The diagnosis of PH, at first doesn't sound serious at all. If we call it “cancer,” there'd be a natural sort of human response. PH doesn't sound like that, so we've been exploring, listening to our members. So we’re going to use the place of transplantation so we can get some media publicity to grab people's attention onto a story which really can be quite inspirational and helps people to understand in a way that is fresh.
I was doing a PhD in pulmonary hypertension, looking at the place of hope in life threatening illness. I was aware at that time, that it was actually very difficult for the individuals to have a narrative with clinicians about how does this impact on my quality of life? The quality of life tools available were often quite complex, not sensitive enough to look at PH itself. EmPHasis10 is what we call disease specific quality of life measure, and one that could easily be completed frequently in clinic. So when there’s intervention or when there is change. There's ten questions. Two and a half years in development, and it's been around now for nearly five years and it's been translated into the 35th language internationally. What we were looking at, at the time, primarily was a tool, in which an individual could have a conversation with healthcare professionals and say, "This is what it's like." So it's called a patient reported outcome measure. We feel it, and I professionally feel, it’s absolutely crucial. It's a descriptor rather than a predictor of the future. To see that type of tool being used in the management and care of PH, I feel is professionally really important.
And what it does also is it raises the individual patient's health and illness, [and puts how they] experience illness on the agenda. Without any doubt a rare disease in healthcare, a patient struggles and has to fight above his belt. So what we're really keen on doing with our patient advocacy group is that we get an equal slice of healthcare provision. The rarity should not be a punishment. Keep it on the agenda with people, policy makers, healthcare policy makers, etc. It's an expensive disease to treat. It's always been in the UK, what we would call, a political disease. So advocacy with government, healthcare etc. So it's absolutely crucial.
I will say, our success has always been about collaboration with professionals, policy makers, internationally, and pharma. And you can't be successful unless there's collaboration.
I’m Iain Armstrong and I'm aware that I’m rare.
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