By almost any standard, when I met Pam she could have passed as a typical single mom. She was in her early 40’s, articulate, had an air of confidence that was attractive (in spite of circumstances), and would have moved mountains to care for her daughter.
By nature, Pam was a nurturer. Her day job was teaching other people’s children in a local private school.
But she was far from your typical single mom.
The first time I saw her, Pam confidently strode into the restaurant. Her naturally charismatic demeanor almost made it possible for other patrons to miss the fact that, in order to breathe, a tube in her nose tethered this bright young mom to an oxygen tank she carried everywhere she went.
A Search for Treatment
Pam is a walking, though struggling to breathe, example of the real-life consequences of an increasingly evident hole in the healthcare ecosystem in the United States.
Born with an undiagnosed genetic condition known as Alpha-1 (Antitrypsin Deficiency), the symptoms of the condition became more pronounced during her high school years. She would often find herself short of breath — a symptom that led her to first one physician then another, each successively misdiagnosing the cause of Pam’s lung disease throughout her young adult years.
Her condition worsened with the passage of time; but the search for some relief persisted.
Driven by an inquisitive nature and a determination to take care of herself so that she could care for her young daughter, Pam resorted to intense self-study on any note that hinted at insight into her condition.
She was nearly 40 years of age when her search landed her in the care of a Pulmonologist who finally diagnosed Pam as an Alpha-1.
The doctor immediately ordered the infusion of Prolastin-C, giving the young woman hope…finally.
As Pam carried her oxygen tank into the restaurant that day, she was living life as a COPD Stage 3 patient. While the weekly infusion of Prolastin-C controlled further deterioration of her lung function, it does not take away the everyday implications of COPD Stage 3 reality.
And here’s the painful question: what are the real-life implications of the 25-plus year delay of the right therapy? Pam’s personal research leads her to believe it is the difference between where she is today, and a COPD Stage 1 reality. The difference between being tethered to an oxygen tank…or not.
Her story is one of literally thousands. Specifics vary. The diagnosis and appropriate treatment don’t conform to any cookie-cutter solution. Certainly, on-going research and advances in understanding of diseases follow an arch that improves therapies over time. In Pam’s case, it is likely that a decade or more of medical advances aided in the eventual diagnosis of her disease.
But the more physicians know, the more a stark reality is underscored: countless neighbors, friends, daughters and sons, fathers and mothers fall victim to delays in receiving life-changing prescriptions.
Variables will always impact the precise identification of a problem; however, once a diagnosis has been made, we would suggest that it is a moral imperative that any delays in the delivery of treatment and therapy be eliminated.
This is where Specialty Pharmacy and in-home infusion of therapies are poised to provide patients across the US with faster, safer personal care. The implications of a global pandemic on those with chronic health challenges only serve to punctuate the value of rapid, safe and secure treatment by way of in-home infusions.
Once a diagnosis and appropriate therapies are known, the mission of a healthcare system is to do everything humanly possible to minimize any delays in delivery. To this end, we predict that physicians committed to disrupting and innovating in the name of expediting care, will find home infusion to be a methodology whose time has arrived.