Shortage Story: Nefazodone
My name is Jeff Vander Zanden, and I’m a lifelong resident of Wisconsin. In 2000, my depression and severe anxiety led to panic attacks. I was started on a common antidepressant, and while that helped, my anxiety was barely under control. My psychiatrist added a medication called nefazodone, and within a couple of weeks my anxiety decreased substantially—with no side effects. This was life-changing!
Around 2003, my psychiatrist warned me the medication could be discontinued and pulled off the market. So we proactively tried a few other medications, but they either didn’t work or caused side effects that were unsustainable. We decided to return to what was working until the drug was actually discontinued. I lived in fear of this happening for over nearly 20 years. I knew nefazodone caused severe withdrawal symptoms if not properly tapered, so I always got my refill on time to make sure I’d have a little extra supply if I ever had to reduce or eliminate the medication.
In 2020, I called in my refill and learned nefazodone wasn’t available. But this wasn’t because of discontinuation, it was a whole new medicine crisis I was forced to endure. Unbeknownst to me, in the middle of the pandemic, the manufacturer informed the FDA of a nefazodone shortage. Companies are supposed to give the FDA a six-month warning, but that didn’t happen. Nefazodone would be unavailable until December 2021.
I called local pharmacies. No one had it. One pharmacy told me it was discontinued–my worst fear. I found out who made the medication and I gave them a call. They told me, “It is not discontinued, but we don’t know when it will be back.” If it is a shortage, I thought, shouldn’t they be making some more? The representative said there was an ingredient shortage. Then I learned that sometimes medicines are short because only one place in the world makes the ingredient and even if a manufacturer wants to make more, they can’t!
The pharmaceutical manufacturing representative told me I could call back any time for updates. I regularly called but nothing changed, it was still short. My doctor and I met, and he gave me a taper plan. I hoped my other antidepressant would keep me in one piece until nefazodone returned. I scoured the internet looking for information and found a Facebook group for nefazodone. I met people like me who had been on nefazodone for over 20 years with no side effects, proving I wasn’t alone in this shortage.
We were all struggling and trying to help each other. People were all saying the same thing: I can’t find a medication that replaces nefazodone. It’s the only one that works for me. I started contacting the FDA shortage department, asking questions, and learning a lot about drug shortages. I had no idea this happened everyday and for all different medicines! By this time, I had tried a couple of different meds, and I had horrible side effects. My doctor had no other options for me.
Due to taking a low dose of nefazodone, I was experiencing withdrawal. I had headaches every day and my anxiety was getting worse each week. To keep my anxiety in check, I pulled back from activities and stopped interacting with people. This completely changed my quality of life. I could stay on a very low dose with the pills I had left if nefazodone came back by the end of the year. My doctor agreed my only next option would be to re-try previously unsuccessful medication.
My anxiety and panic attacks kept increasing. What if nefazodone doesn’t come back? What would I do? What would all of the other patients I have met do?
In Summer 2021, I had to have emergency back surgery. As mental health is directly tied to physical health, I became more anxious and depressed without my normal nefazodone dose. The back pain I was experiencing became very difficult to handle. I reached out to mental health organizations like NAMI, media outlets, and government representatives for answers and to ask for help to expedite the return of nefazodone. Most often, I never received a response. In late September, the manufacturer announced nefazodone would return in the 4th quarter of 2021.
I stayed active in the Facebook group to inform people of the information I was finding. Despite a lot of hopelessness, I kept holding tight to the belief nefazodone was coming back. In November, the manufacturer notified the FDA nefazodone would be delayed to the first quarter of 2022 due to a regulatory issue. People were panicking. I would run out of medication if this were true. A contact at the manufacturer assured me it would be back by the end of January. My anxiety started causing body-wide tremors; I was shaking so badly I couldn’t even use my phone.
The manufacturer announced nefazodone was back around Christmas. Everybody was scrambling to get a prescription, but pharmacies couldn’t fill it. I guess this is what supply chain problems look like. Everyone was elated, but our journey was far from over.
When I first started nefazodone, I had no startup side effects. Since I was still on a low dose, I thought I should be able to titrate up slowly and start feeling better. My tremors weren’t going away. I was getting these bursts of anxiety where all I wanted to do was run and hide under the table. I eventually got back to pre-shortage health again after about 6 months.
I was lucky that I fared better than most people because of my backup supply. I will never forget the horrors of a medication shortage. I am sharing my story to stress that people depend on their medications. Nefazodone is a unique medication with no replacement and only one manufacturer in the world.
Medication shortages should never happen. I am grateful to Angels for Change, which is truly addressing medication shortages from a patient’s perspective. As individuals contacting lawmakers, it is very difficult to get someone to listen to your concerns, much less take action. Angels for Change is important as they are working with the people who can make changes to policies to solve the issues of shortages and with the supply chain members who provide the medicines. Nobody should have to live in fear of any medication shortage or discontinuation negatively affecting their health.