Vince Nicholas, a founding member of Amyloidosis UK, discusses the organization’s work to improve diagnoses, educate healthcare providers, expand patient support, and advocate for better access to treatment.
Transcript
Hi, I’m Vince Nicholas. I’m in the U.K., and I’ve got hereditary ATTR, amyloidosis. I’m one of the trustees of a patient organization called Amyloidosis UK.
Before 2019/18, there were no drugs available for any amyloidosis. But then we heard about new medication being developed, we felt that it really should have some sort of patient involvement to support patients within the U.K. and their families.
We set up Amyloidosis UK to do that, so we would be nonprofitable and we would sit between the doctors, the pharma companies and the regulatory authorities, it was also at that time there was no proper places to go for patients and their families to find out more about amyloidosis.
And the internet is not the best place to go when you want to search for something. So we felt we needed to work with the doctors community and come up with ways of making sure that all the literature and everything, information that patients get when they’re diagnosed, or if they think they’ve got amyloidosis, is, is true and up to date.
The diagnosis of an amyloidosis patient is still taking too long. And, you know, that’s because of the training, the doctors not understanding the diagnosis, the multisystemic disease. So, you know, trying to do that. So one of the big things is to try and get that down.
You know, people can still wait two or three years or five years to be diagnosed. And that’s a real serious problem, because this is a multisystemic disease, the diagnosis can be very difficult because there’s so many different types of things that go on: heart failure, neuropathy, you know, bowel issues, everything.
And it’s the kind of thing you need, somebody needs to join the dots up to say, “Oh, it may be amyloidosis.” There are specialist doctors who understand it, but the everyday doctor, the GP in the U.K., doesn’t necessarily understand that. They don’t get any education and training on that, what amyloidosis is.
That’s the huge thing that we’re trying to do is to educate and support education within the medical system.
On the other end of the scale is the day-to-day people in the street. A lot of these people who have amyloidosis are much older. And, you know, we’ve got to make that consideration about the fact that some of them don’t understand or don’t like looking at social media, where they’re used to having a pamphlet or a leaflet or just talking to somebody.
We have to work very hard to get that through. We are getting there. This year we are managing to that so we can give leaflets and everything to the doctors when they’re handed out to people just been diagnosed.
But the next stage that we’re working on is to make an amyloidosis network within the U.K. Some other countries do have that, but we just recently deploying with the NHS regional hubs, and by the end of the year we should have about four regional hubs around the different countries, around the country, because we found having a place in London is fantastic, but with the disease and the symptoms of the disease, people traveling long distances like from Scotland to Ireland, all those places, it takes quite a lot of effort and support.
Not just monetary but health and issues just getting to your appointment. And so that’s a really big thing that’s actually happening now, and we’re really happy with that. There are lots of patient organizations all around the world supporting amyloidosis, and we’ve been very lucky.
And one of the things that we all share, we all belong to an organization called the Amyloidosis Alliance, which helps support all these organizations.
And we regularly, you know, get together, we talk about things because, you know, it’s just not a one-country problem. It’s a multicountry problem. And it stems from all over the world.
And, you know, unfortunately, it’s still a lottery to what medication you get, depending on how good your rare disease policy in your country is. And, you know, we have to help others who are less fortunate than us to try and improve their situations in their country, because people are still dying in places of the world where there’s no medication.
And that’s not right. Really, that’s not right. And we’re hoping that’s going to help. And we are supporting a lot of projects across the world to do that.
