This blog is one in a series featuring the perspectives of patients, caregivers and patient advocates. PQA supports person-centered care and is committed to engaging individuals and communities as partners in its work to improve safe, effective and appropriate medication use and address issues that impact a person’s ability to access and use medications. Ross Frei is a member of the PQA Patient Advisory Council. The perspectives shared are those of the author.
I have spent my career in pharmacy technology, building tools designed to improve efficiency and lift the burden of technology off pharmacists’ shoulders, so they can spend more of their time and attention on patients. I understood, intellectually, that pharmacists were essential. What I did not fully understand — not until 2024 — was how essential they are when the patient is your own child, and the medication regimen you are being asked to manage at 2 a.m. is not a hypothetical use case, but your daughter’s heart.
Our daughter has Trisomy 21 mosaicism, better known as high-functioning Down syndrome. She was born with a complete atrioventricular septal defect, or AVSD, a common condition for someone with Down syndrome. Her early months brought a growing list of diagnoses on top of that: a chronic feeding disorder that led to G-tube feedings, oropharyngeal dysphagia, hypotonia, and pulmonary hypertension. Between diagnosis and recovery, she was admitted to the hospital multiple times, sicker than we ever imagined a baby could be. Each admission came with its own version of the same question, repeated by exhausted parents: are we giving her the right thing, at the right time, in the right way?
This is where my work and my life collided in a way I never expected.
A Different Kind of Access
Many families navigating a diagnosis like my daughters are meeting the healthcare system, and pharmacy, for the first time. They are learning drug names, dosing schedules, and interaction risks in the same breath as they are learning to live with fear. I did not have that experience, or at least not entirely. While I am not a licensed pharmacist myself, I get to work alongside pharmacists dedicated to improving patient care through my career in pharmacy technology. Because of my occupation I have a daily reminder about the medication expertise that pharmacists possess, and just as importantly, I have direct relationships with pharmacists I can turn to in a moment of need.
That mattered more than I expected. Complex healthcare does not hand you a single hard question and let you rest. It hands you a never-ending list of them, one that grows the moment you think you have caught up. Is this rash from the medication or something else? Can we give this alongside that? Is it normal for her to be this tired today? Having someone close at hand, someone we trusted, to bounce those questions off of when it came to my daughter’s medications was, more than anything else, what got us through. What made the difference was accessibility. Knowing that a trusted pharmacist was one call or text away, willing to think through a question with us at any hour, was the thing that kept fear from turning into panic.
I do not say this to suggest my experience is representative. It is not. I recognize how fortunate we were to have that access, and how many families are navigating exactly what we navigated without it. That gap is precisely why I do this work, and why I sit on this council.
What It Confirmed for Me
My daughter’s heart has been repaired, her pulmonary hypertension has since resolved (it’s amazing what a little body can heal once it has a functioning heart), and she has taken her first steps. She is thriving in ways that felt impossible to imagine during those hospital stays. But the experience left me with a conviction I did not have before, at least not in the same visceral way: medication therapy management is not an abstraction, and it is not a line item in a Star Ratings measure. It is the difference between a parent or a caregiver who is guessing at the right care, or one that feels equipped to keep their child or loved one safe at home.
I already believed pharmacists were undervalued as care team members. I now know, from the inside of my own family’s worst weeks, what it means when that relationship works well. A pharmacist who takes the time to explain not just what to give, but why and what to watch for, is not providing a nice extra. They are providing patient safety. For a medically complex child like my daughter, that guidance is often the thing standing between a manageable evening and an emergency room visit.
Carrying This Forward
As my fellow council member, Wenora Johnson, has noted in a previous PQA blog post, patients should not simply have a seat at the table. They should be involved in the cooking, the preparing, even the grocery shopping that goes into building that meal. Patients and caregivers belong throughout the healthcare ecosystem, not just invited in at the end to react to decisions already made.
The value a pharmacist can provide a patient or caregiver navigating complex care became more apparent to me than I would have thought possible. I saw, up close, what medication expertise looks like when it is fully accessible to the people who need it most. That is the standard I want for every family, not just the ones who happen to know a pharmacist. Serving on the PQA Patient Advisory Council gives me a way to work toward that: representing the patient and caregiver voice early and often in the strategies that shape how medications are used and managed, so that access is not left to chance.