RI lawmaker proposes bill to incentivize finding cures for diseases
"Cure bill" would pledge money to cure cancer, HIV, diabetes and more
PROVIDENCE, R.I. (WLNE) — Valerie DeMarco of Providence was first diagnosed with cancer back in 2008. Six years later it returned as metastatic breast cancer, which spread to her lungs, bones, brain and liver.
“Since ’14 on I’ve never been off a drug,” said DeMarco. “It can be a rollercoaster ride, because is the drug working. When are my next set of scans? What are the scans going to say? How am I going to feel when I wake up.”
For her, some days are tougher than others–constantly tired, using oxygen when she’s short of breath, and taking a whole host of drugs in addition to her treatment at Dana Farber in Boston.
It’s a new normal she’s learned to live with.
“I’ll never be off of chemotherapy unless one of two things happens-I die or they find a drug that will extend my life or a miracle,” said DeMarco.
DeMarco’s life of treatment after treatment is just one version of the reality that millions with incurable diseases face–from diabetes to HIV to Alzheimer’s.
“Drug companies don’t want to find a cure, they want to find a treatment,” said DeMarco.
The potential for profits from those treatments is almost unlimited.
“You find a cure, that all goes away,” said “The lack of incentive has provided a lack of effort to obtain a cure.”
But on Smith Hill, House Majority Leader Joe Shekarchi is proposing a bill that would put big bucks on the table for those who do find cures.
“This bill was introduced and passed into law in the state of Ohio, and the deputy speaker, a republican, a conservative republican, came to me with this idea,” said Shekarchi.
Shekarchi, a Democrat, was drawn by the chance to bring hope to so many Rhode Islanders suffering day-to-day.
“It’s transformative for everybody. Whatever disease you have, this gives you hope that we’re now looking at it a different way,” said Shekarchi.
The “cure bill” would need to be passed in at least six states in order for the idea to work. At least ten are already considering it.
“The idea is for Rhode Island to join an inter-state compact with other states, to pool the amount of money that they pay to treat a particular disease. That would built into a fund, a prize fund, so that pharmacies, universities, venture capitalists, would have a strong financial incentive to find a cure,” said Shekarchi.
Shekarchi battles Type 2 diabetes and says taking action on this is personal.
“The federal government can’t get their act together,” said Shekarchi. “I think this has to trickle down to the state level.”
Valerie DeMarco says it’s another reason to keep fighting.
“If this compact goes forward, that would be fantastic,” said DeMarco.
Asked what it would mean to her if a cure was actually found one day, DeMarco said, “Oh my god. What would it mean? I would be so happy. I can’t even describe, I’d be jumping for joy. Jumping for joy. Because I could live my life with my family and my friends who I love dearly. It would mean the world to me.”
The language of the bill does not limit which diseases qualify, so leader Shekarchi says there is a possibility the prize money could help find a cure for newly-discovered infections like the coronavirus.
© WLNE-TV/ABC 6 2020