A Plan To End Parkinson's

The US has got one - should we follow suit?

When I first heard about the US National Plan to End Parkinson’s I was torn. Was this an admirable example of the ‘can do’ spirit of America, like JFK vowing in 1961 to put a man on the moon by the end of the decade? Or more likely some ridiculous piece of political posturing which would achieve nothing? But having spoken to one of the key figures behind the plan I have decided it is neither but instead a clever way of focusing minds and increasing funding for Parkinson’s research.

Ted Thompson of the Michael J. Fox Foundation, the world’s richest Parkinson’s charity, told me that it was the example of Alzheimer’s which set him thinking about getting Congress to vote for a mission to end the world’s fastest growing neurological condition. Since the National Plan to Address Alzheimer’s Disease (note address, not. cure) was voted through Congress in 2016, federal funding for research has soared from around $400 million a year to $3.5 billion.

On a video call from the United States Thompson explained that one of the first things he did while preparing to pitch his idea to Congress was to commission an audit of what Parkinson’s costs the federal government compared with what it spends on research. He found that it was costing about $27 billion a year to care for people with Parkinson’s while the government was spending around $250 million on research, less than the Michael J. Fox foundation alone was putting in.

“They spend 100 times more money to care for people with Parkinson's than they spend researching Parkinson's. That's a staggering statistic.” 

I wondered what story the figures for the UK would tell. Fortunately, the charity Cure Parkinson’s, which introduced me to Ted Thompson, had used a Freedom of Information request to find out how much our government had been putting into research. The figure has been rising but was still only £6.7 million in the 2021/22 financial year, while the total cost of caring for people with Parkinson’s has been calculated at £728 million per year.

But the clever thing about the plan Ted Thompson pitched to Congress was that it did not involve new government expenditure, at least in the short term. “We're not asking for money. We're asking to put together a committee of experts that are going to assess the entire landscape of the Parkinson's experience.” The idea was that this committee of doctors, scientists, patients and charity executives would frame policies, co-ordinate research to stop duplication, highlight new areas of concern like the environmental factors now suspected of causing Parkinson’s, and promote new ways of diagnosing and measuring the condition.

Key to success was getting the backing of lawmakers with experience of Parkinson’s, and Ted pointed to a Republican man and a Democrat woman who had been hugely influential. Nevertheless, getting anything through a bitterly divided House of Representatives is hugely challenging. The plan was nearly scuppered when Republicans spotted the word “diversity” in relation to the makeup of the committee of experts. In the last couple of years the whole concept of DEI - Diversity, Equality and Inclusion - has become anathema to the American right.

But after much wrangling a new version of the plan saying the same thing but using different language was voted through exactly two years to the day after Ted had first suggested the idea to his colleagues - “in US Congressional terms, that is lightning fast.” The story isn’t over yet - the Senate still needs to pass the Plan and in an election year it will be tricky to grab the time and attention needed.

Whatever happens, however, politicians in Washington will have spent months listening to the army of patient advocates sent by the Michael J Fox Foundation to go and talk to members of Congress. So far, the advocates have clocked up over 350 meetings out of the 535 members of the House of Representatives and the Senate:

“If people don't talk about it with folks who can actually make a difference, nothing's going to happen,” says Ted Thompson.

For me, that is a message that resonates here in the UK. It is hard to see us getting a national plan to end Parkinson’s but maybe in an election year we can all start asking our politicians a few questions. Such as why the government invests roughly 100 times as much in space exploration as it does in Parkinson’s research or why so many people are waiting so long for a first appointment with a neurologist that they go private to pay for a diagnosis. Now, putting those kind of questions to people who can change things sounds like a plan.