VPF is constantly on the lookout for new ways to solve apparently intractable problems. To this end we granted money to Findacure at the end of last year. Although progress is slow (what isn't when dealing with government, in this case the NHS?) it is happening. Findacure hope to be able to use impact bond finance to provide the solution outlined below.
- it will be the first NHS bond
- it will be unique in the world
- it will provide a solution to a problem nobody else is paying attention to...
Imagine you are the parent of a five year old with diabetes…
Over the past year, you’ve noticed their eyesight is rapidly getting worse, so you go to the doctor. After months of testing and sleepless nights, you get the diagnosis of Wolfram Syndrome. An ultra-rare genetic condition.
There is no cure. There is no treatment.
Your child’s eyesight will continue to fade; by sixteen they are likely to be legally blind. Their hearing will start to go; by twenty they will likely be deaf-blind. Not only that, neurodegeneration caused by the condition will make it increasingly difficult to swallow and to breathe. By thirty, there is a real possibility they will die, unable to breathe.
You will spend days, weeks, months travelling for medical care, attending countless hospital appointments and they will undergo endless testing. The mental, emotional, physical, and financial strain cannot be over exaggerated. All because there is no cure. There is no treatment. There is no hope.
Now imagine there is a researcher out there with a drug that could slow or even halt disease progression. But there is no funding to test it - Wolfram syndrome affects too few people for it to be financially viable to fund research.
This is the reality for Wolfram syndrome, and it is the reality for almost all rare diseases.
The clock is ticking for these patients…
The way we treat rare diseases is broken: research is scarce, it takes many years to reach patients, and successful treatments carry astronomical price tags.
Furthermore rare diseases can cost the NHS vast sums of money. Our health economic modelling has shown that Wolfram syndrome costs the NHS £990,588 per year for just 64 patients; it costs the NHS £1,919,751 to treat the 95 patients diagnosed congenital hyperinsulinism each year; and Friedreich’s ataxia has a total cost of £7,560,472 to the NHS and indirect societal costs of £11,928,600 across 2,261 patients.
Our solution uses social finance to deliver new treatments. Findacure aims to address the lack of treatments by creating a social impact bond to sustainably fund generic drug repurposing clinical trials. This is our Rare Disease Drug Repurposing Social Impact Bond (RDDR SIB): a payment-by-results financial tool designed to allow the government to pay for services through savings or efficiencies created by that service. This will quickly deliver low cost treatments that save lives and save money.
By running clinical trials to demonstrate the effectiveness of low cost generic drugs for these high cost rare diseases, we could improve patient outcomes while reducing NHS spend. This reduced spend would provide success payments for the RDDR SIB. Crucially, our modelling has shown that the money saved by repurposing projects is sufficient to cover the cost of a clinical trial and to deliver a return on investment in a social impact bond model.
Using drug repurposing, an NHS partnership, and social impact funding, we will revolutionise drug development for these devastating and neglected conditions, all on a non-profit basis.
Contact Rick@findacure for more information.