By Leslie Herod

Since its inception, Colorado’s Prescription Drug Affordability Board (PDAB) created fear among patients around effects to life-saving medicines and the negative ramifications price controls have on affordability.

Five years on, those fears persist. Patients and advocates continue to push for protections for those facing the very likely scenario drugs whose price is limited by PDAB become harder to find and more expensive to obtain.

One proposal this session sought to exempt so-called “orphan drugs”, those that treat or cure rare diseases, from PDAB price setting. It follows a similar bill last year that speaks to glaring flaws in the PDAB concept. State government attempts to control a massive, complex global marketplace — whether prescription drugs or any other global product — is an exercise in folly.

Patients who face the burden of Cystic Fibrosis (CF) recognized the threat early on. Soon after PDAB started, it proposed to consider an upper payment limit (price control) on the one treatment (Trikafta) that can truly provide relief to CF patients. CF patients and their families mustered piles of research to show the potential harm this could create to accessing Trikafta and made a sustained and impassioned case to the PDAB board to drop the drug from the price control list. They ultimately prevailed.

Seeing that success, patients contending with similarly life-altering illness want to stop the PDAB damage before it starts by exempting drugs that treat rare diseases. This is a policy my organization, the Consumer Health & Advocacy Information Network (CHAIN), aggressively supports.

Patients suffering from rare diseases face the most difficult circumstances, not the least of which is the availability of perhaps only one or two courses of treatment. They must contend with the constant battle for resources and research that otherwise goes to more prevalent diseases. And given the minute numbers of patients having the same condition likely feel alone in their effort to get care and limited in finding others to support them.

All the more reason to ensure we maximize the pathways to accessing care, not constrict and reduce the availability of prescription treatments. Today, more than at any time in recent memory, consumers are desperately concerned about the affordability of life’s essentials: food, housing, transportation and health care. We at CHAIN are working to close the affordability gap when it comes to prescription medications and other forms of health care. The Prescription Drug Affordability Board has failed to live up to its name, providing consumers with zero savings since its inception five years ago, and admitting that at best effects from its policies may not materialize for another 12 months. At the same time, a flurry of real-life and real-impact programs, for example Mark Cuban’s Cost Plus Drugs, make clear how superfluous the PDAB really is.

We support the patients suffering from rare diseases who recognize it’s time to drop the PDAB pretense and pursue real solutions to lowering prices without compromising access.

Leslie Herod, a community leader and former Colorado state representative, is executive director of the Consumer Health Advocacy & Information Network, where she helps lead efforts to lower health-care costs, protect patients and elevate consumer voices in health-care policy.