Every parent’s greatest fear is the loss of a child. And Benjie Fido, father of son Antonio, who was born 25-weeks premature, lives with that fear every hour of every day. Fortunately, Antonio is now a teenager but still has ongoing medical issues.

Antonio has only one lung and lives with a tracheotomy, so something as simple as a common cold could rapidly escalate into a life-threatening condition. Every time Benjie goes out to run errands or takes Antonio to one of his many medical appointments, he knows he is potentially introducing a great risk to his beloved son. While the rest of us can often easily recover from a simple cold, Benjie wrestles with how to cover Antonio’s tracheotomy as well…and that isn’t easy.

For Benjie, it’s frustrating to know the government has enacted price setting policies that could threaten the quality of his son’s life in the future by slowing the development of breakthrough medicines. While America leads the world in biopharmaceutical innovation today, Benjie is worried that could end or be severely hindered if the prices of medications are set by the government. 

He recognizes that if Antonio had not been born in the United States, he likely would not have survived. Benjie is also fully aware that the lifesaving, innovative medicines Antonio received at birth enabled him to get through the difficult early days and months of his life. 

And while Benjie is optimistic about Antonio’s future, he often also has to deal with the burden of insurers and their pharmacy benefit managers (PBMs) getting in the way of his son’s care. “Recently we were told by a PBM that we had to change pharmacies…I was really angry that a pharmacy benefit manager had this much control over my son’s medication,” noted Benjie. Benjie’s story serves as an important reminder - PBMs continue to impact patient care and treatment, standing in the way of patients and the life-saving medicines they need.

While Benjie’s story is unique, its one we hear countless times that underscore why we need a research and scientific environment that encourages collaboration and provides hope in fighting some of our most difficult to treat illnesses. It’s also why we need to stop the abusive practices which are too often standing in the way of patients and their medicines.


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