By Angelina Olivera
“Duchenne muscular dystrophy” isn’t a term any parent wants to hear leave a doctor’s lips. But when my son got his diagnosis, I was ready. I knew what it’s like to fight Duchenne, also known as DMD, because the disease killed my two brothers in their early 20s.
Now, it had come for my son.
Ryu is now 14, and I am so proud of the bright, happy and optimistic young man he’s become. But his struggles are sobering: Duchenne progressively damages the muscles a child needs to walk, climb stairs, get up from the floor and, eventually, to breathe. Boys with Duchenne gradually lose muscle strength and many lose the ability to walk in their early teens. As the disease progresses, weakened respiratory muscles can make it harder to cough and fight infections, while damage to the heart muscle can lead to serious cardiac complications.
I never take a vacation day from caring for Ryu. Our lives revolve around doctors, specialists, medications, insurance approvals, appointments and contingency plans. When we go to the pharmacy, we’re not just picking up Tylenol on the way home. Ryu’s prescriptions are one piece of an intricate treatment strategy designed to preserve his strength and independence for as long as possible.
So, I hope you can understand how I felt when I read the headlines about new legislation that could threaten to destabilize or even close pharmacies. Similar laws have already been enacted in Arkansas and Tennessee, and my fear is that the same will happen in Texas.
These laws all follow the same basic blueprint. Tennessee’s version, the FAIR Rx Act, says one company can’t own both a pharmacy and the entity that decides what gets covered and how much the pharmacy gets paid.
Here’s what worries me as a mom: CVS, which is one of the retail pharmacies that would be forced to close under the Tennessee legislation, says this could mean closing as many as 134 stores, shutting down two dozen of their clinics and cutting more than 2,000 jobs in Tennessee alone. They’re not bluffing to scare lawmakers; pulling apart a system that pharmacies have built their whole business around doesn’t happen without something breaking.
And when something breaks, it’s not the executives or lawmakers who feel it. It’s families like mine, standing at what used to be the pharmacy counter we relied on.
That is the scenario I fear if a similar law comes to Texas. Ryu doesn’t fill his prescriptions at just any counter; he depends on a pharmacy that already knows his treatment history, his insurance approvals and the razor-thin margin for error that comes with a progressive disease.
If a Texas version of this law pushes major pharmacy chains to shutter stores the way CVS says it might in Tennessee, families like mine will lose coordinated, specialized pharmacy support that keeps kids like Ryu safe. We’ll be forced to rebuild that support from scratch, in a state that is already struggling with too few pharmacies to go around.
I understand that legislation can sound abstract. Lawmakers debate ownership structures, competition, regulations, and business models. But patients like Ryu experience the pain of those decisions at the pharmacy counter or at home, depending on medications just to stay alive.
For rare-disease families like mine, if our local pharmacy closes, our lives will flip upside down. We’ll have to recount our child’s entire complicated medical history to someone new. The familiar pharmacist who understood our family’s needs will no longer be available to help. Our fragile healthcare network will take a blow, and we’ll have to put the pieces back together.
Of course, this is bigger than just my family. Texas is already suffering from pharmacy closures and a lack of access. Many of us rely on pharmacies every day, not only families managing rare diseases, but also the elderly, people with chronic illnesses, children and financially strapped caregivers.
Every one of those people needs a reliable pharmacy. What they don’t need is more uncertainty thrown into already nerve-wracking circumstances.
Our lawmakers may be pursuing noble goals: fairness in healthcare markets, lowering the outrageous prices of prescription drugs, but they should think long and hard about how to achieve them. If the cost is to deprive Ryu and me of the pharmacy we depend on, and multiply that devastating effect by tens of thousands of Texas families, then I respectfully request that our representatives go back to the drawing board.
Other states are getting tied up in court, mired in litigation over troubling pharmacy laws that haven’t cured a single disease or helped a single struggling family. Texas doesn’t have to go down this path. Ryu and other children like him thrive only when healthcare is accessible and dependable. That means preserving and supporting trusted pharmacies.
I ask that lawmakers and policymakers think carefully about the road ahead. Before passing laws that threaten the healthcare infrastructure I’ve built for my son, think about all the Texas families spending countless hours coordinating care for children with serious illnesses. That pharmacy counter is a lifeline for us. Please don’t cut it.
Angelina Olivera is a Texas resident who has lost two brothers to Duchenne muscular dystrophy and is now the full-time caretaker for her teenage son, Ryu, who has DMD.
The post Opinion: Texas shouldn’t follow other states with laws that risk pharmacy access for families like mine appeared first on El Paso Matters.
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