open letter newport ri

Medical research over the last century or so has made tremendous strides in easing the suffering and prolonging the lives of people afflicted with potentially fatal diseases like cancer, Alzheimer’s, HIV and diabetes.

But an actual cure to any of these diseases remains elusive. The closest science has come to a cure for a widespread disease was the development of Salk’s polio vaccine, which nearly eradicated polio but didn’t cure those already affected, and that was over 60 years ago.

The pharmaceutical industry has a financial incentive to develop treatment over cures, since treatments will generate continued income for that industry. While universities and hospitals continue to seek cures, funding can be difficult because most research funding dries up without continual, demonstrable progress.

There needs to be another way to incentivize research into cures. A state legislator in Ohio has come up with an imaginative vision for a model that might be the key. Best of all, it would make any resulting cure available to patients at the lowest price possible, without costing the public anything more than the diseases cost us now.

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The plan would create a multistate compact that would offer very large monetary prizes to those who identify a cure to a major disease. The prizes would be funded by the money saved – via Medicaid and other sources – over the first five years by compact member states as a result of the disease being cured.

The prize money offered by the compact would likely be in the multibillions, and will encourage venture capitalists to fund research aimed at capturing it.

The compact would be established once at least six states have passed legislation to join it. The idea is new, so the Cure bill has so far been enacted by only Ohio, where it was conceived by Republican Speaker Pro Tempore Jim Butler and passed in 2018. It has since been introduced in numerous other states, including Rhode Island, where I am sponsoring it (2020-H 7394).

The compact would identify diseases to target, and determine the five-year taxpayer savings for each member state if the disease is cured. Once a cure is verified by widely accepted scientific evidence, to claim the prize, the developer would have to transfer the patent to the compact, which would work with a manufacturer to produce it. Its price would be limited to the actual costs associated with producing and distributing it, except that non-compact states and governments would pay a royalty to offset other expenses, creating extra incentives to join the compact. The more states that join the compact, the greater the prize money.

Having the compact distribute the cure at cost would ensure against unnecessarily high prices, meaning patients worldwide would be better able to access lifesaving medicine developed in this way.

This novel idea turns the medical research model on its head. It’s a big idea, one with the potential for enormous public benefit and no risk. It doesn’t cost the public a dime until a cure is delivered, and then for the first five years, costs no more than the disease already costs the public. After that, we start experiencing the significant savings as well as better health.

Can this really work?  We’ll explore that question in depth during the hearing process. But I do know that the status quo isn’t curing major diseases.

We have nothing to lose and everything to gain by trying this. If it identifies a cure for a single disease, think of the lives and money it will save.

As someone with diabetes, which is treatable but has no cure, I find hope in this bill, as will many other Rhode Islanders. A drastically different approach to incentivizing research could change the course of science and lives worldwide.

Rep. K. Joseph Shekarchi (D-Dist. 23, Warwick) is Rhode Island House Majority Leader.