Who Is Protecting Whom?

Lately, I’ve been pondering the many ways our lives have changed for the sake of safety, like tamper-proof packaging, airport screening, and two-step password verification. I get it. Identity thieves are everywhere, so are scammers, along with the just plain crazies. We might be a little safer, but I wonder if anyone is keeping track of how the changes affect those of us living with serious chronic conditions like amyotrophic lateral sclerosis (ALS).

The first time I became aware of a forced cultural-consumer change “for our protection” was in the aftermath of the Tylenol murders of 1982. Several bottles of Tylenol capsules had been laced with cyanide, causing a few deaths and nationwide panic.

The resulting packaging protections soon became the industry standard for all over-the-counter medications. I’m sure you’ll agree, it’s now nearly impossible to open a vacuum-sealed bubble pack of cold-relief capsules.

Who hasn’t had the experience?

I swear those flat packs of capsules are tamper-proof, terrorist-proof, and customer-proof. My ALS-weakened fingers cannot begin to grasp the itty-bitty pull-tabs that seem to be merely a package decoration.

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Even the cheap eyebrow pencil I buy at Le Walmart comes hermetically sealed in plastic wrap. Only a sharp pair of manicure scissors and my husband’s nimble carving skills can release the pencil from its bonds.

But sometimes the barricade isn’t plastic and aluminum. It can also be invisible, human-made, and enabled by policy and procedure. Again, I get it. But somewhere along the way, we forgot who is protecting whom.

Recently, this happened

It all began a few weeks ago when my husband went to our local pharmacy to pick up my new (for this year) prescription of riluzole, marketed in the U.S. as Rilutek. The pharmacist handed it and the receipt to my husband, and he had instant sticker shock. The bill showed my one-month supply of pills almost cost the same as a sports car. Well, maybe a tiny sports car, but nevertheless, the numbers signaled something was terribly wrong.

This led to a runaround that didn’t do much to protect me.

The pharmacist shrugged her shoulders and suggested we call my health insurance to find out why.

My ALS-affected voice prevents me from speaking fast enough to answer questions over the phone, so my husband does the talking for me. We dialed and were told we had a nine-minute wait. So we waited. The first human voice we heard began with a series of questions. I call it the “20-questions game.”

Beyond the basic name, address, phone, birth date, and account number, we had to share what county we live in, email address, and more. After another brief wait, we were transferred to a customer service representative who asked all the same questions again. Finally, she asked, “How can I help you today?” After explaining the problem and another lengthy wait while she checked her computer, we were told to call Medicare.

The day went downhill from there. Medicare told us to call my doctor. My doctor’s nurse said to call the pharmacy. The pharmacy said, “Nope, not us.”

All along, we played the “20-questions game” multiple times, listened to scratchy on-hold music, and spoke with customer service people who we rightly guessed were working out of their homes. It took two weeks to resolve the issue.

But at what cost? All along, my husband and I kept asking ourselves, who is the customer here? I wondered, what if I were really ill? Or what if I didn’t have someone like my husband to speak on my behalf over the phone? How would I manage it all? Healthcare organizations are certainly protecting their patient’s private information, but for many patients, navigating the path is very difficult.

What’s the moral of my story? There’s no moral, only that we have to live with the changes and challenges. And I know that no matter the challenge, I can live well while living with ALS.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.