Funding is being cut for screenings of patients with too much bad cholesterol, even in frontrunner countries. But testing, instead of having to treat, is much more cost-effective, says Jules Payne.
Jules Payne is the CEO of Heart UK, a cholesterol charity. She spoke to EURACTIV’s Henriette Jacobsen and Evan Lamos at the European Atheroschlerosis Society (EAS) conference in Glasgow.
What is the EAS conference in Glasgow about?
The EAS conference is all about talking about atherosclerosis and also a bit about familial hypercholesterolaemia and various other cardiovascular diseases. It’s a healthcare professional organisation. They bring everybody together here in Glasgow. There have been some interesting findings and presentations.
What is Heart UK?
Heart UK is a cholesterol charity. We represent both patients and healthcare professionals and we provide experts for guidance and education. We have various educational programmes to support guidance on diet and lifestyle related to cholesterol but also the inherited cholesterol.
Why is this conference important to you and your organisation?
It’s important to me, because it brings together European organisations. Over a number of years, I have been meeting with other European patient organisations and FH patient organisations. We have developed really good relationships and there are probably around seven countries that have met, but actually there are now many countries that are meeting. We wanted to formalise an official European FH patient organisation. We have set out the form of the network in which it will operate. Now we see that other organisations would want to be part of that network, so there are going to be more than 16 countries engaged.
This is really important right now because FH is really starting to take off in European countries, in some more than others. Certainly in the UK, it is starting to get there and get noticed. There are services starting up. It’s a really important time. In terms of numbers around Europe, we are looking at 1.6 million people with FH.
The whole point of the network is to support new organisations in other countries setting up, but also to share best practice between the existing organisations. Now we can come together to try and influence policy. The patient voice is absolutely key. Patient power can really influence governments around FH.
What do patients with FH need?
FH is an inherited form of cholesterol. These people are born with two-three times more cholesterol than the average person. It can be a really terrible disease. They can die early of cardiovascular disease, in their ’20s, ’30s or ’40s. So they really do need to be found early in life. You develop cardiovascular disease much earlier than the average person. Early identification is absolutely key.
How do you detect people with FH, for example in the UK?
In the UK, there are a lot of new FH services that are starting up. Where a patient is identified in primary care, they would have 7.5 total cholesterol or above, and heart disease in the family, and then they would get a referral to a lipidologist where they will have a genetic test. They will be managed in that clinic and referred back to primary care and secondary care.
Is the UK a frontrunner when it comes to detecting FH?
The UK is certainly not a frontrunner in terms of identifying numbers. I would say the UK is a frontrunner in terms of healthcare professionals which are specialising in FH.
The Netherlands has done fantastically well. We saw a presentation here at the EAS, where the Netherlands has actually identified 71% of the FH patients which is amazing. Unfortunately, their funding has been withdrawn, so it has pretty much been capped at that. Norway is second and the figure for Norway was around 43%. The UK is very low. We’re only at around 12%. That means that there are 80-90% of people unidentified. It’s a ticking time bomb. They must be identified.
I think the UK now is in a really good place because we have the services that we can now refer the people to. We can now do public campaigns. But what I would say is that there’s still a lot of policy engagement to be had, purely because not all of these services are funded. Some of the funding comes from a large charity, and they are funding some nurses. Some of the other funding is coming from the industry to fund the software that is being used. There is still a long way to go. I think that is where other European countries, excluding the Netherlands and Norway, still have a long way to go.
I would like to see all the 1.6 million people being found and identified as FH patients. It really isn’t rocket science to test them.
You mentioned the Netherlands being a frontrunner, and even they are seeing their funding cut. Why are politicians cutting down in this area?
I think it’s an interesting point why funding is being cut. In the UK, the problem is not allocating the funding in the first place or giving priorities for FH. It has taken a real push from the industry and the National Health Service to actually get this really going. But other European countries such as the Netherlands have the opposite problem. We could not get funded because conditions such as diabetes, obesity and smoking were taking all the funds, and the priority was not given to FH services because the new services had just been introduced.
It’s cheaper to detect people because once you have identified families, you just need to test the children.
In the Netherlands, the funding was cut due to changes in priorities from their government. it’s about priorities changing and keeping that pressure on, and whoever shouts the loudest, normally gets heard.
How do you shout the loudest so that you can be heard by EU politicians such as MEPs and the Health Commissioner?
How you shout the loudest is, you get a network together. What you do is make that network work and build a powerful group for example togther with the EAS that can engage with the government in the discussions. Healthcare professionals are very powerful in their own right. They are powerful, with the knowledge that they have about the condition. The patient organisations are really powerful because patient power is extremely compelling. Bringing the two together, you have actually got a really good powerhouse.