Last week, the National Plan to End Parkinson’s Act was passed unanimously by the US Senate — and having passed through Congress, this historic bill now heads to President Biden’s desk to be signed into law. This milestone event was unsurprisingly celebrated enthusiastically by the Parkinson’s community across America, making headlines across the world, and will undoubtedly benefit people with Parkinson’s throughout the USA.
This leaves one major question: how can Europe learn from the National Plan to End Parkinson’s Act, and bring about something similar for the European Parkinson’s community? We’ve asked some key figures from within Europe for their thoughts.
What is the National Plan to End Parkinson’s Act?
The National Plan to End Parkinson’s Act is the USA’s first-ever federal legislation dedicated to ending Parkinson’s disease. It directs the U.S. Department of Health and Human Services to develop and maintain a plan — which will be known as the National Parkinson’s Project — to prevent and cure Parkinson’s disease, treat its symptoms and slow or stop its progression.
Its core purpose includes things like increasing research funding, improving early diagnosis, creating better treatments and care pathways, and enhancing public awareness of Parkinson’s.
While celebrating the news of the Act’s passing through Congress, the Michael J Fox Foundation thanked its grassroots advocates, revealing they had sent over 70,000 messages to their members of Congress, as well as thanking the 215 senators and representatives who championed the bill, including its lead sponsors, Senators Shelley Moore Capito and Chris Murphy.
What can Europe learn from the USA?
We asked senior figures from key European Parkinson’s patient organisations for their thoughts on how this milestone bill could inspire Europe to approve a similarly official plan to help our own Parkinson’s community.
Parkinson’s Ireland CEO, Shane O’Brien, said:
“We at Parkinson’s Ireland feel that at EU level, a similar plan should be adopted to end Parkinson’s. Such an act would create measurable objectives and would in turn be another way to hold key decision makers to account. We have witnessed the benefits of the UN Convention on the Rights of Persons with Disabilities. We have seen from the COVID pandemic, the impact that international cooperation can have on complex health issues. The Parkinson’s community across Europe deserves a renewed focus on improved treatments and the search for a cure.”
Alex Reed, President of the European Parkinson Therapy Centre, said:
“The rapid growth of Parkinson’s over the next 20 years will put an unbearable burden on economic budgets of European Governments”. The USA government have recognised this and recent research shows that with extra funding to stop progression and reverse the devastating effects of Parkinson’s will decrease the costs long term to the economy and massively impact the lives of thousands of people. It is essential and the moral duty that European countries are seen to be taking action based on economic and humanitarian realities, keeping more people in the labour market, lowering health costs and improving lives. This is the core role of any government and we strongly believe the USA legislation will help make this happen.”
Here at Parkinson’s Europe, our Director General, Russell Patten, said:
“We were delighted to hear the news that Congress has Passed the National Plan to End Parkinson’s Act. It is an amazing achievement and demonstrates what can be accomplished when people living with Parkinson’s, organisations and political champions rally together to demand change.
With European election week finally here, we will soon have a set of newly appointed MEPs. This provides us with an amazing opportunity for us in Europe to ramp up our campaigning efforts to ensure that decision makers address the priorities and needs of people living with Parkinson’s. Whilst we know there are many differences between US and EU health structures, systems and legislation, there are clear parallels between what this Act aims to achieve and what the European Parkinson’s community have said that they want in our recent Manifesto i.e greater access to care, better treatment pathways, improved diagnosis, and increased awareness.
There are valuable lessons that we can learn from the process which our friends in North America have been through and I am keen to see if we can take on a similar challenge in Europe.”
Find out more about the National Plan to End Parkinson’s Act on the Michael J Fox Foundation and Parkinson’s Foundation websites.
This news item came from: https://parkinsonseurope.org/2024/06/07/national-plan-to-end-parkinsons-act-what-can-europe-learn-from-the-usas-historic-bill/
