Dealing with Medication Shortages

A few months ago, I started seeing articles on social media and elsewhere about medication shortages, specifically in those medications that those of us with Stage IV Metastatic Breast Cancer (MBC) are often prescribed. Since most of those articles didn’t apply to any medication I am currently prescribed, I read them out of curiosity mostly. And then in July, I tried to refill the medication I am currently taking, Xeloda/Capcitabine, and ran into the issue myself. I wanted to share what happened and also the plans I’ve made to address the issue as best I can.

The first indication that there was something going on was when I called Accredo (the mail speciality pharmacy that my insurance requires that I use) and I was unable to refill my prescription through the automated system. I had to speak with a person and right away there were issues. My insurance will only pay for my medication at regular intervals and there are usually very few ways to get medication refilled earlier than the insurance dictates (here in Florida, one of the only ways to get medication early is when a hurricane is coming!). The dates that came up through my insurance were not available for the person I was speaking with to select for me and there didn’t seem to be a solution as the explanation was that there was simply not sufficient medication to fill my prescription on time.

So, I took a deep breaths (actually quite a few) and got into fix-it mode.

We conferenced in my insurance company on the call (something I do rather often in these circumstances) and got approval to fill the medication early. Perhaps the computer was anticipating a shortage? Still not entirely sure. Not only did we get approval for the medication to be filled early, I also asked Accredo to overnight it so that I would know for sure that I had the medication on time (early) and wouldn’t have to seek out other solutions. I didn’t want to be caught in a situation where I needed the medication the next day and didn’t have it. The medication arrived timely and I was able to start my cycle.

But once we had that worked out, I jumped into proactive mode, which wasn’t well received.

Everyone on the call wanted to hang up and pat themselves on the back that the crisis had been averted. I’ve been on Xeloda for a little over eighteen (18) months now and am hoping to be on it for a long time to come. I can’t just think about this month or this cycle, I have to look ahead. The “patient care advocate” had no solutions, the pharmacist said “your doctor can just prescribe something else” and my insurance company had no suggestions.

I had many bad words running through my head at this point. I had to mute the call and do some deep breathing and also punch a few pillows.

Then, I started asking lots of questions. Lots of scenarios and how the pharmacy and insurance company might respond. I think the people on the call were a little taken aback as I dug into the systems and potential solutions and scenarios. Each of them at one point or another attempted to end the call because, as they shared, I was talking about a potential problem in the future and speculating about what could or might happen just wasn’t something they were able to help with. But, I persisted because problems kicked down the road isn’t a solution for me, I need to have a plan in place so that I don’t implode.

Here’s what I discovered:

• Pharmacies often have agreements with other pharmacies to assist with medication supply when they (or their suppliers) don’t have a medication readily available. The pharmacist shared with me that Accredo has filled prescriptions for other “sister pharmacies” experiencing shortages.
• While pharmacists can suggest that you speak with your doctor about alternative medications, they are not permitted to require this to happen. The pharmacist on the phone with me got an earful about MBC and how his suggestion to simply get another medication prescribed by my doctor was entirely inappropriate and revealed his ignorance about MBC. I really tried to focus on education and not say the bad words on parade inside my brain, but one or two might have slipped out.
• If the pharmacy that your insurance company requires you to use doesn’t have medication, it is entirely reasonable to ask them to pay for the medication from another pharmacy that has the medication. I haven’t tested this yet, but I have been told that this is a possibility.
• The local cancer center where I am treated has an on site pharmacy and that can be an alternative for medication. I’ve put my team on alert that I may need them to assist if the mail pharmacy option isn’t successful. Side note — I have discovered that I don’t get any pushback or side eyes when filling prescriptions for opioids at the cancer center pharmacies like I often do at retail pharmacies.
• Membership based bulk stores like Sam’s or Costco often have pharmacies available to members. I tested this for us and while my co-pay for my medication through my insurance is $15, not using insurance and going through one of these memberships would cost me about $30 for the same prescription.
• There are direct to consumer pharmacies like GoodRx that also offer prescribed medication directly to consumers without using insurance. Utilizing this service would also cost me about $30/month for the same medication.

I realize many of these solutions that I’ve mapped out here are likely only applicable to oral medication. It is a whole different scenario when looking at medication shortages for IV medication and the medication I’m on is old enough that the patents have expired so the cost is lower overall.

But.

In this experience with MBC, I’ve rarely encountered anyone who wants to plan ahead, who wants to brainstorm solutions for problems that aren’t right in front of them, right now. I get that the medical system overall is taxed to the max, especially since COVID. My desire to be proactive versus reactionary isn’t a perspective that gets much support. What I’ve learned though, is that if I don’t have a plan in place before a crisis, I don’t do well.

And so I will continue to push this issue, I will continue to force the “advocates” to stay on the line, to think through what could happen, and ensure that when a crisis occurs, we have something in place to address my needs and I don’t feel bad about that at all.