A Patient’s Perspective on Medication Refills and Advocacy

As someone living with chronic conditions, I’ve learned that managing medications can be as challenging as managing the illnesses themselves. We trust healthcare providers and pharmacies to support us in maintaining our health and well-being, but when systems break down, the consequences can be painful, frustrating, and even dangerous. Recently, I experienced a frustrating series of events that highlight the need for better patient advocacy and streamlined processes in our healthcare system.

It started with a simple refill request for a medication I’ve been taking for years. What should have been routine turned into a week-long ordeal of pharmacy stock issues, doctor unavailability, and communication breakdowns. I found myself caught between pharmacies and medical offices, desperately trying to avoid withdrawal symptoms while also dealing with an unrelated infection.

I ordered a necessary medication refill on a Tuesday, as part of my routine care plan. I do it regularly every month. By Friday, (note they’d had it 3-4 days at this point, I didnt run out of meds UNTIL Friday) I went to pick it up, only to find that the pharmacy was out of stock. I was told to speak to the pharmacist if the medication was urgent, so I did. However, I was then told that in order to fill the prescription at another pharmacy, I would need a new script from my doctor. But my doctor historically wasn’t available on Fridays.

That weekend, I became unwell. I went to urgent care, where I was diagnosed with an unrelated infection. But alongside my infection, I experienced symptoms of withdrawal—symptoms caused by the missing medication. I immediately sent my doctor a message explaining what had happened and the withdrawal symptoms I was experiencing. I have been under her care since 2017, and she had approved my prescription months ago. There was nothing new or unusual about this situation—this was the same medication I had been prescribed and that I had ordered on Tuesday.

Despite this, my doctor’s office was silent. I continued to feel the effects of withdrawal, unable to eat properly or function without pain. It wasn’t until Tuesday that I finally reached out to the office, explained the situation, and asked for guidance. After some persistence, the office confirmed that they would cancel the Walgreens order and send the prescription to Walmart instead.

But still, nothing happened. By Wednesday afternoon, I received a vague message that gave me the sense that my situation was not urgent or important. (A professional way of saying, your situation is not a priority, she’ll get to it when she gets to it, and believe me, I’m not saying I’m a priority or better than anyone, I am saying MY SITUATION merited a closer than fleeting glance) I had been without my medication for almost a week, and I was truly suffering. Yet, when Walgreens finally called to let me know they had restocked the medication, I immediately called and told the doctor’s office and asked what do I do? She told me not to pick it up from them. They implied that doing so might make me look like I was trying to “beat the system.”

I was simply trying to manage my chronic illness with the medication that had been prescribed to me, a treatment I’ve been using for years. The lack of communication from my doctor’s office made the situation even more exasperating. My health was deteriorating, and yet, I was met with suspicion and delay.

Then, as it was a Friday and I thought the doctors office wasn’t going to respond because it was a Friday I made the decision to pick up the medication from Walgreens anyway, I received an unexpected message from the doctor’s office: they had approved my prescription and were sending it to Walmart. By then, I had already gotten the medication from Walgreens, I of course immediately called the office felt compelled to make it clear that I picked it up. That morning in fact. Then I said I wanted everything handled through Walmart from that point on. This wasn’t an issue of seeking special treatment; it was a matter of ensuring I had access to the medication I needed, which I had been prescribed and ordered in advance.

This experience has shed light on the urgent need for better patient advocacy, both from healthcare providers and pharmacies. Policies and protocols need to be in place to handle situations like this—where patients are at risk of going without crucial medications and the healthcare system fails to support them. When withdrawal symptoms are involved, or when a patient’s medical condition is chronic and requires ongoing treatment, a system should exist that ensures no patient is left in limbo or subjected to unnecessary delays. Communication should be clear, swift, and consistent. When a patient is suffering, there should be a concrete backup plan for emergencies, so that healthcare providers and pharmacies can act quickly to prevent harm.

Unfortunately, my experience with the healthcare system didn’t end there. After seeing how badly I was struggling, my husband urged me to see his doctor, hoping they could offer more support. His doctor is part of the same hospital network, so we made an appointment and explained the situation, he did not think changing to his doctor would make anything worse, he just felt that I deserved better treatment. To his surprise (but sadly not mine), the doctor, without even fully understanding my medical history, immediately dismissed my need for pain medications. She suggested I visit a pain clinic, something I had done years ago, only to be treated like a criminal.

The doctor seemed unconcerned with the fact that I’ve been managing chronic pain from fibromyalgia, a condition with no cure, for years. I explained that I avoid narcotics—especially opioids—due to my previous history. I have not taken opioids since my heart stopped in 2017. Yet, this doctor treated my use of a non-narcotic medication like (L) as if it were just another attempt to get high.

So, how do we move forward? What needs to change to ensure that no patient is left without the care they need?

• First, healthcare systems must implement clear protocols for handling medication issues and withdrawal symptoms. Providers and pharmacies alike should be trained to recognize the urgency of these situations and act swiftly.
  
• Second, patients need better access to advocacy resources and should never feel like they’re fighting an uphill battle to receive their prescribed treatments.
  
• And lastly, healthcare providers should understand the real, lived experiences of their patients, especially those dealing with chronic illness.

I’m ready to get started on making these changes happen. There are many moving parts, but with enough support and awareness, we can begin to create a more compassionate, responsive healthcare system for everyone. This is about more than just medication—it’s about treating patients with dignity and respect. This fight isnt only chronic pain, its anyone who takes a prescription they will have withdrawal from. I’m hoping to start/join a community and make a difference. Until next time gang. take care of yourselves, and each other.