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Advocating for Change: Timely Access to Anti-Seizure Medication Refills
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Many epilepsy heroes and families deal with or are aware of challenges with refilling medications in time. Patients are often not allowed to request ASM refills until 1-2 days before running out of their current meds, and if they are using brand-name medications, pharmacies can often put the burden of ordering back onto the patient. This pharmacy practice can result in patients being out of critical medications for multiple days.
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Brandy Herald, epilepsy advocate and author of the story below
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"I take gabapentin to control my focal impaired-awareness epilepsy. After years of being seizure-free, I experienced two breakthrough seizures when the pharmacy was late filling my prescription because of its short two-day refill policy.
From that moment on, I began to feel anxious every time my gabapentin was due for a refill. I worried that another delay could leave me without my medication and put me at risk of having another seizure.
After experiencing additional late refills, I decided to contact the Epilepsy Foundation of Virginia for guidance. They put me in touch with their Advocacy Director, Adam Gibson. With Adam’s help, we began making Virginia legislators and the Virginia Board of Pharmacy aware of the difficulties people with epilepsy can face when trying to access scheduled antiseizure medications.
Through this work, I have learned that my experience is not unique. I have heard about similar experiences from other people with epilepsy through a VCU Epilepsy Nurse Navigator. Hearing their stories made it even more important to me that this issue be addressed.
We are now working with two Virginia delegates to explore ways to improve access to these medications and help prevent unnecessary interruptions in treatment.
What began as anxiety over whether my own prescription would be filled on time has become an effort to help other Virginians living with epilepsy. My hope is that our work can lead to meaningful changes so that people with epilepsy don’t have to worry that difficulty accessing their medication could result in a preventable seizure."
Brandy Herald
Epilepsy hero and advocate
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The Virginia Board of Pharmacy has asked pharmacists to exercise professional judgement in dispensing medications, citing regulatory provisions of 18VAC110-20-320, in their August 2026 newsletter.
Partial Dispensing is Permitted
Under 18VAC110-20-320(A)(2), the partial dispensing of a prescription for a drug listed in Schedule III, IV, or V is permissible, provided that:
1. Each partial dispensing is recorded in the same manner as a refilling;
2. The total quantity of drug dispensed in all partial dispensing does not exceed the total quantity prescribed; and
3. No dispensing occurs after six months after the date on which the prescription order was issued.
Refill Timing Must Align with Prescriber Directions
Under 18VAC110‑20‑320(D), authorized refills must be dispensed in “reasonable conformity” with the directions provided by the prescriber. When no explicit directions are present, pharmacists should rely on recommended dosing and professional judgment.
Early Refills Are Permitted When Clinically Justified
Pharmacists may dispense an authorized refill ahead of schedule if they document a valid reason for doing so.
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Do you experience challenges in securing or dispensing your antiseizure medications?
Let us know!
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Epilepsy mom Amanda writes,
"As a mom of a child with epilepsy, I can honestly say I’ve cried in the parking lot of a pharmacy a time or two over difficulties coordinating refills.
When there’s an issue with medication supply, I’m often just told, 'We’re out, but we should have more in a few days.' I then have to figure out which other pharmacy has the medication in stock and handle the calls and coordination myself. I consider it a privilege that I’m able to drive 45 minutes to another store to access medication when needed, because I know that simply isn’t an option for every family.
I really appreciate the attention being brought to the patient and family experience here."
To share your stories and experiences in the next newsletter or on Facebook and Instagram, email efva.woo@gmail.com!
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Mark your calendars for the 11th Annual Tour de Midnight on Saturday, October 17th!
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Join us at the Midnight Brewery in Rockville, Virginia for the 11th Annual Tour de Midnight bike ride, benefitting the Epilepsy Foundation of Virginia!
If you're not a biker, no problem: you can run or walk too! The ride will start and end at the Midnight Brewery and you will have multiple ride distances to choose from.
Can't make it to Rockville? We have two satellite locations in Vienna (Caboose Brewing) and Chesapeake (Big Ugly Brewing)!
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TdM locations across Virginia in Rockville (green star), Vienna (yellow star), and Chesapeake (orange star).
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There will be live music, food, and family fun at all three locations. And don't worry- if you're not in Virginia or can't make it on the 17th, there's even a virtual option for you!
Registration is open until Tuesday, October 13th at 5:00pm, and same-day registration will be available on October 17th at all locations.
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Prefer not to bike, walk, or run? We are always happy to have volunteers. Come volunteer with us and help everything to run smoothly! Check out the BikeReg website for the listing of volunteers needed, and sign up before Friday October 9th!
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Thank you to all of our bikers, volunteers, epilepsy heroes, families, and registrants for showing up for your teams! Here are the current team rankings:
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Dr. Stacey Epps, EFVA President, and Dr. Suzanne Bischoff, Executive Director, talk 11th Annual Tour de Midnight with "12 On Your Side RVA"
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Are you interested in sponsoring the Tour de Midnight?
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! Limited number of exhibitor tables available for sponsorship in Rockville !
Please email bike@hillmardesign.com for more info.
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No 2026 Winchester 5k Race
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The 5k Winchester Race in Berryville, VA will not be held this year. Please check back for information about the October 2027 race next year!
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Direct Assistance Program Updates
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The Epilepsy Foundation of Virginia’s most resource-intensive initiative is our Direct Assistance Program. Since the start of the new fiscal year on July 1, we have distributed aid 118 times. However, the administrative effort required to process these applications has tripled. Delays frequently occur because applicants submit incorrect Zelle information, fail to provide required medical documentation proving current epilepsy care, or send application materials in separate pieces.
To ensure equitable distribution, we have introduced new criteria requiring families to give back to their epilepsy community. Applicants can view and complete these requirements directly on our website.
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August 2026 Public Health Institute:
"Building Inclusive Communities"
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Lowell Evans, epilepsy hero, regional director, attended the 2026 PHI.
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Public Health Institute (PHI) is the annual skill-building conference to improve the ability of the epilepsy network to address the social determinants of epilepsy. Through the Epilepsy Foundation’s collaboration with CDC, this annual conference is hosted with our national partners to help our network address the unmet social needs of the epilepsy community.
Regional director Lowell attended this year's PHI and writes,
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"The Public Health Institute that I attended August 26-28th in Tulsa, OK was great. The focus was on Building Inclusive Communities & Collaborations to
Achieve Epilepsy Equity. I thought this was a great theme because the best way for things to get done is by together. It is always better to work as teams. I think of sports having a first team and a second team or offensive team and defensive teams. Still, they all collaborate to achieve the same goal. Working together is much easier than working apart and that is “networking.”
The Public Health Institute had us do workshops on Wednesday, Aug 26th ,
the first day of the event. These workshops were held from 8:30am to 4:15pm. It was a long day, but very educational. The statement made about “Partnerships can develop strategies” stayed with me the entire time. Again, we had teams working together and putting together strategies to overcome challenges that we were facing. This made everyone collaborate and put on our “Thinking Caps” to help resolve issues for people in the community living with epilepsy. The goal was to provide a short- term action plan for advancing a priority partnership. It was fun.
Thursday, Aug. 27th , we went to Langton University at 8:30am. The CEO
Bernice Martin Lee of the EFA spoke first. She did a wonderful job in making
everyone feel comfortable because this was about Disparities, which we know still exist in the Epilepsy world. We were all in the auditorium for this. They talked about statewide funding, that can be used to support families and improve navigation. They discussed identifying disparities to building system -level solutions. The speakers were really good and one of them was a neurosurgeon. SUDEP was discussed and how the gaps in discussing SUDEP is still taking place. They mentioned that Support Groups help people dealing with epilepsy learn about this and make them aware of it even when the doctors are not willing to discuss it. There was a great panel for this, and one was Dr. Jonathan Williams who was an epileptologist.
What I was impressed with the most at the function was the fact that the
EFA sees the need to collaborate with other agencies and even the government to be successful. It has always seemed to be a struggle for people with epilepsy to find help, but after attending the PHI, I see the EFA is truly networking to eliminate the barriers that people in society with epilepsy have been facing."
Lowell Evans
Regional Director
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Please help us in welcoming the new Richmond Regional Director, Abhi Gummadi!
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Abhi Gummadi, new Richmond Regional Director
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Abhi is a bioinformatics major at VCU doing epilepsy diagnostic research using machine learning and nuclear imaging. Epilepsy runs in his family, and he's seen how it affects family and friends firsthand. He hopes to do more research in the future to help epilepsy patients.
Welcome, Abhi!
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Elizabeth Hart Dalton Scholarships board complete with new 2026 recipients, shown by Media Director AnnaLin Woo
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Science article: Sleep disorders may be linked with higher incidence of SUDEP
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SUDEP, or sudden unexplained death in epilepsy, is a prevalent cause of death amongst individuals with epilepsy. There is plenty of active research looking into the causes of SUDEP, but not many studies looking at sleep itself. Sleep disorders in individuals with epilepsy are already known to be associated with worse seizure and overall epilepsy outcomes.
In this 2026 study by Lazaj et al, a care referral center in Canada tracked 1500 patients with active epilepsy, comparing those diagnosed with sleep disorders such as sleep apnea, restless leg syndrome, insomnia disorder, and narcolepsy. Adjusting for age, sex, epilepsy type, and epilepsy duration, having a diagnosed primary sleep disorder was associated with increased odds of high SUDEP risk (odds ratio 1.93, 95% confidence interval 1.02-3.64).
If you have diagnosed sleep disorders, or suspect you may have them, please discuss your concerns with your doctor!
Interested in reading more?
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Independent Program: "The Rewired Brain: Creating Pathways for Epilepsy Surgery Recovery"
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John Canada, epilepsy advocate and developer of the program described below
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"John Canada III spent 41 years with drug-resistant temporal lobe epilepsy. After
successful TLE surgery, He achieved complete seizure freedom, discontinued all medications, became a distance runner completing distances from 5k to marathon, earned a Master’s degree, and achieved employment in federal intelligence. Now he has the opportunity to mentor others through their brain surgery journey towards the possibilities on the other side of surgery. He did not have to suffer alone so he is providing the possibility that no one does.
The Rewired Brain Mentorship Program provides free peer mentorship for people facing temporal lobe epilepsy surgery, RNS implants, VNS, and other epilepsy brain surgeries. I mentor patients through their recovery journey—showing them what is possible based on my own 41-year epilepsy journey and complete post-surgical recovery. It is peer support, not medical advice, grounded in evidence and stewardship.
All epilepsy patients considering epilepsy surgery or in post-surgical status are welcome to explore what is possible for them in a safe and nurturing environment with a mentor who has been on this journey. Mentorship is free. The mentoring should encourage the patient into the possibilities in their life without the stress of financial expenditure. The rewired Brain Mentorship Program exists primarily for the patients who are curious about what is possible. The reason why this program will work is because it offers the patient the opportunity to partner with someone who has similar experiences in their journey forward. We pair patients with mentors who have documented exceptional recovery outcomes, demonstrating what is possible while supporting realistic, individual recovery journeys The rewired Brain Mentorship Program strives to support, confront fears and direct a way forward.
John W Canada III has over come adversity and challenges by adopting a healthy lifestyle becoming a distance runner for fitness, achieving a master’s degree from Florida State University with a 4.0 GPA and two honor society inductee while working as crime and intelligence analyst and elevating into a federal intelligence career post-surgery. All his achievements are evidence of possible outcomes following brain surgery. The rewired Brain Mentorship recognizes every epilepsy journey, and desired life possibilities are different, and
we celebrate each mentees uniqueness, wants and needs.
All interested patients can contact rewiredbrainmentorship@gmail.com or visit
rewiredbrainmentorship.wordpress.com and complete a mentee form to gain access to mentoring and resources. All mentees will get guidance and support from a mentor who has been on a similar journey. Most of all the mentee will get HOPE."
John Canada
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If you are an epilepsy hero in need of a paint kit to join in, please contact us! We have paint kits to distribute thanks to the Jack and Jill Club of Reston.
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Inova Neuroscience and Spine Institute
1st Tuesday every month
Link to flyer
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Virginia Epilepsy Support Group
4th Wednesday every month
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S.H.A.R.E.
Dates and times change, check website
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SHARE invites epilepsy heroes of the DC metropolitan area, Virginia, and Maryland region to meet with other epilepsy heroes over zoom and in person! Meeting times vary each month- for more information, check the website.
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THANK YOU FOR YOUR SUPPORT!
Our epilepsy community is stronger each year because of YOU.
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Register now for programs and events offered by the EFVA!
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EFVA 2025-2026 Financial Documents:
Audit coming soon
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