Family Heart Foundation Director of Policy and Outreach, Cat Davis Ahmed, spoke on a panel at the Network for Excellence in Health Innovation (NEHI) Annual Meeting April 26 to discuss the potential for paying for innovative, high-impact therapies through novel arrangements in the healthcare system to share risks and rewards. Interdisciplinary experts representing insurance plans, the pharmaceutical industry, consumers, and patients discussed opportunities and barriers to putting these arrangements in to practice.

“The future is now,” said Cat Davis Ahmed. “Precision medicine is available for FH and some value based contracts are in place for FH treatments, but there are barriers to access. FH is a good case to look at when talking about affording tomorrow’s cures. This is a distinct population of about 1.3 million Americans with a genetic disorder that causes very high cholesterol from birth, and when untreated leads to early heart disease – with expensive and devastating consequences. There are a range of treatments available, from low-cost, very effective generic statins and ezetimibe that will work for some, to more costly treatments, including and LDL apheresis, novel PCSK9 inhibitors, and two treatments for Homozygous FH, the rare form of FH affecting 1 in 300,000. Gene therapy for Homozygous FH is in a clinical trial with several patients already dosed. If proven to be successful, we’ll have to figure out how to pay for that too. How do we afford tomorrow’s cures? We have to find a way to address this challenge and enable meaningful access to the right treatment, for the right patient, at the right time.”

Participants highlighted some of the hurdles, including both policy and practical considerations for putting innovative approaches in place. Cat emphasized the importance of transparency to patients, so they can understand when and how they are affected by payment arrangements between drug manufacturers and health plans that are based on considerations such as the patient’s response to a drug or another treatment outcome. These are early days for value-based approaches, but it will be important to have all stakeholders at the table to help shape the future so that our healthcare system can afford tomorrow’s cures.