Regular readers of Patient Worthy know the cost of drugs is a huge barrier to treatment for many patients and families.
Additionally, the fewer people diagnosed with a condition, the higher the cost of coverage. That formula is just as true for our friends across the pond in Europe as it is here in the U.S. But while our healthcare landscape is roiled in uncertainty, cystic fibrosis (CF) patients and caregivers in Ireland at least have gotten some welcome financial relief.
Recently, Ireland’s national health service, the Health Service Executive (HSE), came to a price agreement with Vertex Pharmaceuticals on pricing for Orkambi and Kalydeco, two breakthrough drugs for treating different CF mutations.
The agreement allows the HSE to reimburse the cost of the drugs. That’s welcome news for the admittedly small group of patients and parents of patients living with the gene mutations treated by the two drugs. It’s also a reversal from an earlier recommendation by the National Centre for Pharmacoeconomics (the body responsible for determining drugs’ cost efficiency), which came out in 2016 against covering Orkambi and Kalydeco.
The decision was welcomed by the advocacy organization Cystic Fibrosis Ireland, which had been lobbying hard not just for reimbursing the drugs, but for expanding coverage of Kalydeco to include children between two and five years old (previously it was indicated for children above six years old). And the timing of the announcement—right in the middle of Cystic Fibrosis National Awareness Week—couldn’t have been better. As an added bonus, the agreement will also cover additional Vertex drugs in the development pipeline, which may one day allow treatment choices for the full spectrum of CF patients.
We couldn’t be happier for the nearly 600 CF patients and families in Ireland who will benefit from this decision. As we try to figure out what the future of healthcare looks like in the U.S., we can only hope political leaders in Washington, D.C. are open to exploring what can be possible when there’s a will to make a change.
Read more about the HSE announcement here. What do you think government’s role should be in negotiating drug prices? Sound off in the comments below!