Numerous residents of Colorado are concerned about the possibility of relocating to another state in order to obtain a crucial medication that could save their lives. They express frustration as the state board responsible for determining their access to this medication appears unresponsive to their pleas for assistance.
According to Stacy Emore from Kremmling, although the Prescription Drug Affordability Review Board was established with the intention of reducing expenses and enhancing the availability of prescription medications, she believes it might yield contradictory outcomes.
Marlee, her daughter, was diagnosed with cystic fibrosis at birth, and doctors predicted that she would not survive beyond the age of 40. The mother explains the challenges they faced, stating that even the simple act of breathing was difficult for Marlee. She emphasizes that their life revolved around Marlee’s treatment schedule and pill times, leading to a constant need for sterilization and sanitization.
In April, a significant development occurred as the FDA granted approval for a revolutionary treatment known as Trikafta to be administered to CF patients as young as two years old.
According to Emore, her daughter experienced a noticeable change within a fortnight of starting the medication. She expressed, “She is now able to breathe effortlessly, run with ease, engage in dirt biking, and horseback riding. It’s as if a whole new world has opened up for her… it feels like a gust of wind beneath her wings, allowing her to finally soar.”
After a brief moment of optimism, she expressed that it was the first time she genuinely believed her daughter would experience a life of normalcy. Regrettably, this hope was short-lived.
Colorado’s Prescription Drug Affordability Review Board recently revealed their contemplation of imposing a price cap on Trikafta, a medication that currently costs over $300,000 annually.
Emore and other individuals are concerned that the manufacturing company might withdraw its drug from Colorado. They believe that the impact it has had on their family and the potential it holds for future families is indescribable. The drug is saving lives, and they plea for it to not be taken away from them.
Emore expresses that she and her spouse have no alternative but to relocate away from their entire family in order to rescue their daughter’s life.
She expresses frustration that the five board members, who hold the power to determine their future, have failed to attend the public comment session. She believes that they are putting their lives and the lives of their children at risk. She questions why they cannot spare just two hours to listen to their greatest fear at this moment in life.
Emore declares that even though public comment has ended, the board has not seen the end of their activism. They affirm that CFers are determined to continue fighting until victory is achieved.
According to the Division of Insurance, two board members participated in the last meeting via phone and will take into account the drug’s impact on patients’ lives before making a decision. However, price remains a significant concern.
The average yearly expense for patient treatment is approximately $1,700. However, according to the state, the overall cost to the healthcare system, which includes Medicaid, amounts to more than $200,000 per patient annually.
However, patients and providers maintain that access to the drug is not a problem due to the availability of insurance and co-pay assistance programs.
The board is currently evaluating Trikafta along with four other drugs for a potential price cap. A decision regarding this matter might be reached prior to the year’s end.
