We share the challenges faced by all rare disease patients, and we understand how crucial it is to ensure their protection from price caps (UPLs) that could potentially affect access in Colorado and nationwide.

The Prescription Drug Affordability Board (PDAB) reviews drugs that they deem unaffordable. While we agree with lowering prescription drug prices, we want to ensure that we will still have access to these drugs once a UPL (Upper Payment Limit) is placed on them. As the current law stands, there is no guarantee that the UPL would not force the drug manufacturer to leave our state. The manufacturers do not have to negotiate with the state. 

The struggle to convince drug companies to develop treatments for diseases affecting only a small number of patients is immense. If manufacturers pull out of the state due to unfavorable conditions, there is no safety net for these patients - they would be forced to relocate. 

The "Medicaid Best Price Law" implies that any price cap introduced could trickle down and impact all states, exacerbating an already precarious situation. This makes it even more critical that we demand a second reading for Colorado Senate Bill 60-24 on the Senate floor. This bill is bi-partisan sponsored.

https://leg.colorado.gov/bills/sb24-060

Senate Bill 60-24 protects Rare Disease Patients, has been designed with these considerations in mind, and deserves our full attention and support. It's time we stand up for those who are often overlooked or ignored due to their small numbers but face enormous challenges every day.

We are being silenced again. Our bill has effectively been blocked from discussion. Please join us in urging our senators to give this bill another chance on the senate floor.

Patients are being used as leverage. We are innocent in this war against "big pharma." Please do not risk our lives in an effort to propel healthcare reform.

 – because every patient matters, no matter how rare their condition might be. Sign this petition today!