Editor’s Note: Margaret Storey is a member of the board of directors of The Danny Did Foundation, an associate professor of history at DePaul University in Chicago, and a Public Voices Fellow with the Op-Ed Project. Follow her on Twitter: @MargaretStorey3. The opinions expressed in this commentary are solely those of the author.
Margaret Storey: Some people with epilepsy have to deal with Sudden Unexpected Death in Epilepsy
Just as medical marijuana help those with pain, we desperately need a SUDEP revolution
In CNN’s “Weed” series, Dr. Sanjay Gupta called for a “marijuana revolution” to help patients who are suffering from pain, seizures, and other serious medical conditions. As a mother of a daughter with Aicardi syndrome, a very rare disorder that causes hard-to-control seizures and significant physical and cognitive disabilities, I couldn’t agree more.
These days, it’s almost commonplace to learn of successful efforts by parents of children with epilepsy to gain access to medical marijuana for their kids. I have been part of that effort, and I am struck by how dramatically this campaign has highlighted what it’s like to live with unremitting seizures.
But there’s a more devastating threat for people with epilepsy. It’s largely unknown, despite its prevalence: Sudden Unexpected Death in Epilepsy (SUDEP).
Imagine for a moment that you had seizures that put you at risk for falling, drowning, going into cardiac arrest, or suffocating in your bed. Now imagine that there were devices available that could help detect those events and alert caregivers or bystanders for help.
Wouldn’t you consider such devices medically necessary?
Probably so. But most insurance companies don’t. And indeed, few neurologists prescribe any form of seizure detection system or device for their patients (including children). This is despite the fact that those with uncontrolled epilepsy are particular risk for SUDEP.
The absurdity of this situation was painfully evident to my husband and me when – after two weeks of intensive monitoring at the hospital – our baby daughter came home with us to the cold comfort of an infant monitor from Babies ‘R Us.
Suddenly, what had been viewed as an emergency just wasn’t anymore. And we were expected, somehow, to monitor her needs at home. It was a terribly frightening new reality and responsibility.
Eleven years later, not enough has changed, despite the fact that there are now seizure detection devices in development and on the market that offer hope to patients and their families.
We still face the fact that it is an accepted practice that people with epilepsy (some 3 million in the United States) are not, as part of routine health care, provided devices to alert others that they are having a seizure and require assistance.
This is particularly hard to understand when we look at the science. We know that people with epilepsy face a much higher risk of death than does the population at large. We also know that these risks are particularly pronounced among the 30% of people whose seizures do not respond to medication (like my daughter).
And, according to a recent study, SUDEP is likely more preventable through better seizure detection. Mounting evidence in other studies suggests that nighttime monitoring, in particular, could help to prevent SUDEP.
To be sure, the state of seizure detection technology is still in its infancy. Not all devices work for all people, and most new devices have not yet been approved by the FDA for seizure detection. But it is also clear that some of them are showing very promising results for particular seizure types in clinical studies.
The fact that we have not yet perfected the ideal device for everyone, however, should not prevent doctors from prescribing, and or insurers from paying for, devices that have been shown in research studies to help patients.
One form of protection – the pulse oximeter – is an established, tried and true tool for measuring fluctuations in oxygen saturation and heart rate that could easily be prescribed for use while sleeping, especially in children. Until the FDA approves a wider range of sophisticated options, the pulse-ox is a reasonable solution.
In the absence of insurance coverage and FDA-approvals, patient advocacy groups such as the Danny Did Foundation, on whose board of directors I serve, are bridging awareness gaps by educating families on their monitoring device options, and filling access gaps by funding devices for families who cannot afford one.
But we need to ask ourselves why it is considered a tolerable risk not to automatically provide the most appropriate monitoring systems available to people with epilepsy as a routine matter of health care.
Change in these practices could mean that parents of children who have nighttime seizures might be able, finally, to stop sleeping in their children’s rooms. Teenagers might be able to achieve the greater independence they crave. Adults could have peace of mind that spending time alone need not be life-threatening.
A newly-diagnosed diabetic leaves the hospital with blood sugar monitoring equipment. People with apnea are prescribed CPAP machines. Surely, knowing what we know about the life-saving and life-improving aspects of seizure monitors, we can make such devices routine, covered, durable medical equipment for people with epilepsy.
The “marijuana revolution” offers new hope of treatment for people with uncontrolled seizures, but we mustn’t stop there. We also desperately need a SUDEP revolution—a change in attitudes and practices that makes it unthinkable, and unnecessary, to tolerate this risk to the lives of people with epilepsy.
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