The Inflation Reduction Act says that only special drugs for one rare disease wouldn't have their prices subject to government negotiation. But this might make it less likely for companies to try making these drugs work for more diseases — which could mean even fewer treatment choices for people with rare diseases.

However, if treatments for rare diseases that can help with more than one sickness are also excluded from government-negotiated prices, it might make companies more likely to keep making new and helpful treatments for people with rare diseases. 

Fortunately, there's a bipartisan bill in Congress that will protect these treatments: The ORPHAN Cures Act.

We have an obligation to the next generation of patients encourage the development of the next generation of treatments. Developing treatments for rare diseases can be exceptionally costly due to the limited patient population available for clinical trials and the complexity of the treatment itself. Pharmaceutical companies invest significant resources into research and development for these treatments, and price controls hinder their ability to recoup these investments — which disadvantages current and future rare disease patients.

Tell your elected officials to protect access to ALL rare disease treatments!