Legislation jeopardizes Conn. patients
Though it was nearly 30 years ago, I still remember the feeling and the magic the first time I held my newborn babies. As a new mom, there was so much to learn, so much joy, so much excitement for the future. I have recently experienced this again, through the eyes of my daughter, who gave birth to my first grandchild.
However, a few months after my son Will was born, the excitement turned to worry. At 3 months old, Will was diagnosed with Cystic Fibrosis.
Instantly, there was even more to learn, and I know more about CF than I ever thought possible. The disease is genetic and causes mucus to build up in organs — most notably the lungs that often makes breathing hard. At the time of Will’s diagnosis, CF kids often didn’t live much past their teenage years. Now however, CF patients are living decades longer, thanks to advances in treatments. That’s great news, but there is more to do. Not all of the new treatments work for everyone. That includes Will. Due to a mutation in his CF, the most common treatment that is now available does not work for him. That means Will continues to do multiple breathing treatments up to four times a day. He is in and out of the hospital and regularly needs antibiotics. We need science to keep going to help people like Will who need to manage these chronic conditions.
That is why it is so upsetting to see legislation proposed in our home state of Connecticut that could stop innovation in its tracks. SB8, “An Act Concerning Prescription Drug Costs” will do little to adjust what people pay for their medications but will do a lot to slow down research and development for new treatments for chronic disease.
The bill has many facets, but among the most troubling is the proposed establishment of a Prescription Drug Advisory Board. PDABs have been enacted in other states across the country such as Colorado and have been found to have very little impact on patient costs, but large impact on the availability of medications for those who need them.
The fact of the matter is, that the answers to the high out-of-pocket costs that patients are forced to shoulder don’t have a one-stop shopping kind of answer. There are multiple layers and players in the chain from when a drug comes to market to when it gets to the patient. A holistic look at the system is what’s needed, not the ruminations of a board of individuals who could hold the fate of a patient’s treatments in their hands, based on cost, not the change in the quality of life, or disease progression of a patient.
For a state that prides itself on protecting health care, it is antithetical to pass legislation that so readily will negatively impact Connecticut’s patient population. I urge the General Assembly to reject SB8 and protect the hope and future treatments that Connecticut families like mine are counting on.