Access to anti-seizure medications, or ASM’s is a longstanding issue in underdeveloped countries, where resources are scarce and public health officials must prioritize contagious diseases. I previously blogged about an East Ugandan study, which found that 75% of Ugandan children with epilepsy were not treated with medication, because it wasn’t available. While horrifying, that statistic wasn’t shocking. The number left me feeling grateful and privileged to live in a country where I can access and afford my anti-seizure medications.
This month, I learned that the United Kingdom is experiencing significant medication shortages, which have doubled over the past two years. Much of Europe is experiencing medication shortages for several reasons including the Ukrainian war’s impact on supply chains, increased regulatory paperwork due to Brexit, and attacks on shipping in the Red Sea. But the UK was hit even harder, in part because the pound’s value plummeted after Brexit, which made the medications more expensive for the National Health Service to buy. These factors have led to shortages of two ASM’s in the UK, Tegretol and Lamictal. The shortage is bad enough that nonprofits like Britain’s Epilepsy Society are warning its members and urging them to seek help from medical providers.
I saw two news stories about moms with epilepsy who don’t have easy access to their medications anymore. On January 19th, the UK-based e-publication, Metro ran a first-person anonymous commentary by a Yorkshire woman with epilepsy, whom I’ll call Jane. Jane was diagnosed with temporal lobe epilepsy in 2012 after a head injury. Her seizures increased, so her doctor made multiple adjustments to her medication regimen over the years. Most recently she was placed on a higher dose of Lamictal in 2023; the doctor prescribed 250mg twice a day. Due to the U.K. medication shortages, this month Jane was only able to get a ten-day medication supply. She started taking a smaller dose, so the supply would last longer, but this rationing strategy resulted in an uptick in her seizures’ severity. The muscle clenching during her seizures was so harsh she dislocated her shoulder and fractured her kneecap. The injuries might require surgery and Jane was forced to take time off from her teaching job. In the meantime, she is still rationing her Lamictal tablets. The Epilepsy Society confirmed that Lamictal is expected to be in short supply until March 2024. “It feels like my life is just on hold in this vicious cycle,” Jane said. “This [medication shortage] is due, in part to a weaker value of the pound since Brexit and a government policy of taxing manufacturers. How is it fair that people like me are bearing the brunt of this crisis? We already go through the pain of seizures. We don’t need this indignity too.”
Two days later, the UK’s Sky News ran an e-story about Charlotte Kelly, a woman from London who was diagnosed with epilepsy over twenty years ago. Charlotte takes Tegretol to control her seizures. She was due for a two-month refill in mid-December. Despite calling five pharmacies, she couldn’t get the full amount, and it’s unclear when the medication will be available. Like Jane, she was forced to ration her meds and take a lower dose. “I’m scared knowing that I might not get any medication for a few weeks, or a couple of months, I just don’t know when. If I don’t have my medication I could have multiple seizures, and that could lead to hospitalization, and at worst case, death. The anxiety of worrying about if you’re going to get your medication builds up and the worry alone can cause seizures.” Charlotte also mentioned the additional concern of being forced to rely on her 14-year-old daughter to call for emergency help if she has a seizure. I could relate Charlotte’s account of this unsuitable role-reversal due to seizures. I found it so inappropriate that I resorted to brain surgeries to stop my seizures, a journey described in my book, Seizing Control.
I’ve blogged about the importance of medication compliance before. For those with epilepsy, following one’s medication regimen is a basic tenet of self-care. As Jane and Charlotte both noted, the consequences of not taking anti-seizure medications can be dire, if not fatal. Reading about the UK’s medication shortage, I’m grateful we haven’t had to deal with that in America yet. Hopefully we never will, but where we’re living in volatile times, there’s no guarantee.
As a parent who had to simultaneously manage intractable seizures while raising my children, I know how important it is to stay on track with medication routines. We can’t afford to screw those up– our children depend on us. My heart goes out to Jane, Charlotte, and their families. Hopefully the UK resolves their medication shortage issues quickly, for all those depending on medications currently in short supply.