Little Me Vs. Big Pharma: 7 Lessons I Learned From My Pharmacy's Negligence

A ball and chain is a device made out of iron that’s so heavy it was once used on the ankles of prisoners to prevent their escape from jail.

If I were to describe the energetic experience of being a patient in the American medical system, I would say it feels like each of my ankles is bound by its own ball and chain.

One ankle is bound by the weight of my hospital visits. The other, by the weight of my pharmaceutical needs.

Thalassemia major is my diagnosis and it comes with a lifelong need for chronic transfusions of red blood cells. Transfusions cause a toxic amount of iron to build up in the body, so I also require daily medication to remove that iron. The process of iron removal is called chelation therapy.

Earlier this year, my chelation medication became difficult to obtain. Not because I became uninsured or moved out of the country. No, this was the result of pharmacy negligence.

Every month, I call my specialty pharmacy to get my chelation prescription refilled. On this particular occasion, my representative told me that they were having trouble obtaining the brand version of my medication.

As a result, they said they might have to replace my normal medicine with a generic. I’d been taking this particular drug brand for over 30 years, so naturally, I was upset.

I shared my concern with the rep, but he said not to worry, they’d give me a phone call and let me know if a generic was coming. I never received a call.

My shipment of medicine arrived month after month, without any notification of any change. Then, one day, I called my specialty pharmacy for a refill and got a different representative on the phone. I asked for the refill and she said, “OK, we’ll be sending you the generic.”

“No, I’ve been getting the brand,” I replied.

“No, you’ve been getting the generic. I see in the system that you’ve been getting it for months,” she said.

I went home that day and checked my medicine boxes. Blue and white packaging — check, name on the box — check. “What are they talking about? I’m not getting the generic,” I thought.

Meanwhile, all the while, I’d been feeling stomach pains and dizziness that were both very foreign to me. Another month went by.

My next shipment of medicine arrived in yellow boxes. These were clearly not my brand, yet I still hadn’t received a phone call telling me generics would be sent.

I called the specialty pharmacy. My ball and chain felt heavier than ever. The representative said, “Yes, the company that creates the brand drug no longer produces it, so we’ll only be sending generic from now on.”

Sirens went off in my brain.

“This is it,” I thought. “Martin Shkreli’s price gouging philosophy has finally reached the company that creates my medicine. It’s no longer patented, so they’re ditching us; they’re not creating it anymore. I’m finished!”

I started texting all of the thalassemia advocates I know. “Have you heard that this chelator is no longer being made?” Everyone replied with different experiences. One person on Medicaid said her service was never interrupted. Another person with private insurance said she too was being pushed to generic.

The thalassemia foundation contacted their personal representative from the big pharmaceutical manufacturer and asked them my question. Was the drug no longer being produced? The foundation couldn’t get a straight answer. Now their alarms were going off.

My brain went into full panic mode. I then asked people on Facebook what their experience was. Then my doctor. Still, no straight answers. “Yes” or “no,” people!

I asked a secondary insurance company if the big pharma company had stopped producing the drug and they gleefully said, “Yep, doesn’t look like they are creating that chelator anymore!” I blinked and wondered if I’d entered a different dimension.

I then called my specialty pharmacy and asked to speak with their pharmacist. “Nope, they’re not making this drug anymore.”

Wow. No warning. No announcement. No weaning us off. We’ve been dropped like hot potatoes.

To make a really long story shorter, the specialty pharmacy was in fact sending me a generic for many months. The boxes looked so similar I couldn’t tell the difference. The name was the same, with an additional word I didn’t notice because I’d been running on autopilot for so long.

The big pharma company did not actually stop producing the brand drug. What happened was they stopped producing a specific one gram vial of the drug that the specialty pharmacy was requesting. If not for the genius suggestion of someone from thalassemia.org to ask for smaller 0.5 gram vial doses, I would still be taking a generic.

Here’s what I learned from this experience:

1. You absolutely must advocate for yourself. Don’t let anyone tell you “This is just how it is now.” I’d still be taking a generic medication if I settled for what my specialty pharmacy rep told me.
2. Do not be afraid to ask everyone you know for help. The more people you ask, the closer you will get to the truth of the situation.
3. Be an expert on your medical needs. Take pictures of your pharmaceuticals so you can refer back to them. Don’t allow yourself to run on autopilot when it comes to your health. Always check your medications and ask questions about your care.
4. Document everything. If you ever run into trouble, write down the date and time, who you spoke to and what was said.
5. Expand your network. Join groups where there are other patients with your diagnosis. Don’t fight the power yourself. There really is strength in numbers.
6. Try not to get ahead of yourself with worst case scenario thoughts. Have faith that things will work out for you.
7. Don’t take your anger out on middlemen. They are just regurgitating what they’re being told. It’s not their fault (although, it would be nice if they were more educated on the products they’re talking about).

I hope you never have to use these lessons, but if you do, I hope they serve you.