This spring, I read two articles that made my stomach churn. Epilepsy treatment made headlines on March 25th, written up in Digital Journal, an online platform that publishes business, technology, and entertainment stories. The article – focused on business trends within the anti-epileptic drug (AED) market – referenced a recent Epileptic Seizure Treatment Market study, citing their value at $1.2 billion, and predicting a 4% increase in growth rate by 2030.
I read the data and my skin bristled. As a person with epilepsy who lived with uncontrollable (a.k.a. refractory) seizures for decades, the blatant marketization of AED’s felt wrong. The medications provide critical salvation to people with seizure disorders. They weren’t something for financiers to drool over, tossing out fancy economic terms related to profitability. But perhaps I shouldn’t be so fast to criticize. After all, this detached financial analysis was press coverage about epilepsy. If drug companies think AED’s are profitable, they’ll invest more resources into them. Hopefully this helps more people with seizure control.
Three days later I read a different epilepsy-focused story, and I knew this positive outcome was a pipe dream. The piece referenced an Eastern Ugandan study, which found that 75% of children with epilepsy in the region were not treated with medications. [i] The study quoted a doctor who noted that children who have epileptic seizures are often stigmatized. When she asked caregivers why they didn’t get treatment or medication for their children, they cited hopelessness and lack of transportation. “Whenever we take her to hospitals or clinics, we are always told that there is nothing much they can do to make her condition improve,” one caregiver said. According to the Executive Director of Uganda’s Epilepsy Association, many health centers around the country don’t have drugs for people with epilepsy who require them daily.
Uganda’s Commissioner of Non-communicable Diseases noted that drug shortages for non-transmissible conditions are a problem. [ii] Epilepsy isn’t contagious, so treating it is not a priority in Uganda. I pictured the children with refractory seizures making the long arduous trip to the clinic, only to be told they didn’t have the necessary AED’s in stock. Then I recalled the Digital Journal article, which indicated that Pacific Asia—not Africa—is expected to have the greatest AED growth rate in the coming years, thanks to increases in the epilepsy patient population, expanded epilepsy awareness, and “strengthening market players” in the region. Again, my stomach roiled. The bolster to Uganda’s AED market is crucial, but likely unattainable due to market forces. Other factors including poor infrastructure, scarcity of medical personnel, and cultural concepts about epilepsy.[iii] But first and foremost, patients can’t access the medications they need because they’re not there.
I looked up the companies listed on my Keppra and Vimpat bottles—Harris FRC and Aurobindo Pharmaceutical. The latter has five sites in Africa, although none in Uganda. Given Uganda’s lousy AED access, a clear action step is that Aurobindo earmarks some of those predicted profits for a Ugandan epilepsy awareness campaign that includes Vimpat distribution. The sad truth is that this likely won’t happen, because drug companies are driven by profitability models and market forces —not patients’ needs.
[i] Epileptic children not getting medication – report | Monitor
[ii] Ibid
[iii] Antiepileptic drug treatment in rural Africa: involving the community. – Abstract – Europe PMC
It’s a bit different in Kenya. I easily get my seizure medication. Though getting diagnosis was à long way