Brexit comes at expense of the rare disease community

Dr Jayne Spink, Chief Executive of Genetic Alliance UK 

According to the old adage, you never know what you have until it’s gone. This is certainly true of health and our NHS. As a result of Brexit, we are already suffering substantial losses and worse may be yet to come.  

If our predictions become reality, healthcare and research for rare diseases will be an early casualty of Brexit. Members of the rare disease community are already beginning to feel the impacts and to understand the imperative for protecting research and care. There are over 6,000 rare diseases affecting an estimated 3.5 million people in the UK; that’s 1 in 17 of us. If you don’t personally have a rare disease, then remember that your loved one, family member, friend, colleague, your future child or grandchild or your neighbour does. Everyone needs to care about this issue because it does, or will in the future, affect every single one of us.

Many rare conditions are severe and life-changing. Three quarters of rare diseases affect children. Delays in diagnosis, misdiagnosis and hurdles in accessing expert help and coordinated care are familiar experiences for many patients. Much of the progress in rare disease research and care is owed to the UK’s ability to strategically collaborate with countries across Europe. Brexit threatens every aspect of this collaboration.

We have already lost, as a direct result of Brexit, the UK’s leadership of 6 of the 24 European Reference Networks (ERNs). The ERNs draw on the expertise of doctors and researchers at 900 specialised healthcare units located in more than 300 hospitals across 26 EU and EEA countries.

Our self-expulsion from the EU’s medicines regulatory system, the European Medicines Agency, and the incentives of the centralised process for medicines approvals could be the difference between UK patients being able to access new treatments or not.  Rare disease medicines are trialled on a multi-national basis - there being too few patients in a single country in most instances to make single-nation trials viable. Being part of the EU has cemented the UK’s pole position for the launch of new medicines, being either first or second (after the USA).

The damage done to our ability to access funding for international collaboration with EU27 partners will impact negatively on the volume and quality of research outputs and participation opportunities. For most rare diseases there is no effective treatment. New medicines bring hope and, where proven effective, save and transform lives.

It’s not only access to experimental treatments we stand to lose. Brexit has threatened our medicines supply chain. Medicines to treat complex rare diseases, particularly biological and advanced products, will be amongst the first casualties.

Genetic Alliance UK was steadfastly unequivocal before the referendum that a vote for Brexit would damage our NHS and the prospects for the 3.5 million UK citizens affected by rare diseases and their families. Now, two years on, we see little cause for optimism as the various Brexit scenarios are being played out and we hurtle towards 29th March 2019.

In the debates and discussions about Brexit and health please remember the rare disease community. We believe there is still time to make a difference and hope that you will show your support for the rare disease community by signing up to our campaign to protect European Reference Networks.

Brexit is bad for the rare disease community, and bad for the UK's health. This is why we need a People's Vote.

Share

Being a part of the EU has been a huge positive for my medical supplies business

P owns a business which supplies medical kit like syringes and sterile gloves.

When my brother and I started our company in 1997, the world was a very different place.

We both needed a new career path, and the idea to start our company was hatched - I came from the trading floors of the city and he came from a role as a medical rep. We hired an office on a small business park and started calling potential customers and suppliers: that was the start of our business journey.

Read more
Share

Newsletter 27th October 2018

Another huge, huge thank you to everyone who came to the People's Vote March for the Future on Saturday! It was a fantastic day, with 700,000 people marching in the sun to show support for a People's Vote on the final Brexit deal.

Read more
Share

Newsletter - 19th October 2018

Newsletter from 19th October 2018 - the day before the big march!

Read more
Share

"I am writing here because I want the NHS to survive."

Anette Pollner, EU citizen and ex-NHS staff member, writes about her fears for Brexit's effect on the NHS.

Brexit will be the end of the NHS as we know it. I think that’s pretty clear now.

Certainly, in the event of a no deal Brexit, plans have emerged to change the NHS to an American style private insurance system. Even if there is a deal, funding for the NHS will be severely cut because of the dramatic downturn in the UK economy that will follow any deal that is now being discussed.

In other words, it will be the end of the NHS.

The end of the most exceptional heath service in the world, a service that is part of my life in many ways.

Read more
Share

Newsletter - 6th October 2018

With conference season over, we're now only six weeks away from Theresa May approaching Parliament with a fully-formed deal backed by the EU. I think I speak for everyone when I say "yeah, right!"

Read more
Share

"The delays at ports, the extra tariffs... Brexit has the potential to be catastrophic"

A business owner which supplies medical products like swabs, needles, and surgeons’ gloves to smaller organisations tells us why he's fearing for his business in a post-Brexit world.

Read more
Share

Newsletter - 29th September 2018

Well... What a busy week! With Corbyn telling the EU that we will not stand for a no-deal Brexit and Labour making the steps to backing a People's Vote, the campaign is really ramping up. 

The tide is turning. To help our hopes become reality, show your support in the biggest march for a People's Vote yet. Sign up below and join us in London on 20th October!

SIGN UP FOR THE MARCH HERE

Read more
Share

Newsletter - 22nd September 2018

Hello all,

As the sky gets darker and the night gets longer, the Brexit news stories appear to be following suit... With only six months left to Brexit day, we're getting closer and closer to the chance of a disastrous no-deal, which will irreparably damage our NHS.

But not all is lost! Momentum for a People's Vote is building, and the March for the Future is only a month away...

Read more
Share

Joan Pons Laplana - "Brexit will kill the NHS"

Happy birthday NHS?

In July the NHS celebrated its 70th birthday. It should be a time for celebration, but as a nurse I have the duty of care to tell you that our healthcare system is on its last leg, and Brexit will kill the NHS.

Read more
Share