Challenge of the Year
Challenge of the Year is a new initiative through which the Epilepsy Foundation of Michigan will select a significant epilepsy-related problem to work on each year. Through a variety of efforts (including education, public policy advocacy, and public awareness campaigns), we will strive to make a noticeable impact on this problem in Michigan. Check this webpage often to learn more about the issue, what we've been doing to address it, and how you can get involved!
2017 Challenge of the Year: Accessing Appropriate Epilepsy Care
Although guidelines exist regarding quality of care and use of specialty care for people with epilepsy, they are not consistently followed – particularly among healthcare providers who do not specialize in epilepsy. In addition, many people with epilepsy and family members are not aware of when and how to seek specialty care, and if they are, they may still face numerous barriers to accessing the care they need (e.g. insurance limitations, geographic and transportation barriers, etc.). Delays in obtaining appropriate diagnosis and treatment can lead to increased seizure frequency and severity, seizure-related injuries, mood and memory disorders, higher healthcare costs, unemployment, and increased risk for premature death. Possible repeal of the Affordable Care Act adds a sense of urgency to this challenge because the replacement plan may further limit access to specialty care.
Fewer than 1% of people with drug-resistant epilepsy are referred to a comprehensive epilepsy center. When referral does occur, it happens an average of over 20 years after onset of habitual seizures1.
What is "Appropriate Epilepsy Care?"
Appropriate Epilepsy Care refers to affordable and accessible healthcare that accurately diagnoses and effectively treats your epilepsy. Too often, people with epilepsy spend years trying medication after medication with little success and are never told that there are other options in terms of specialists and treatments. In other cases, patients are diagnosed with epilepsy and treated for years only to find out later that the diagnosis was incorrect. Getting appropriate epilepsy care as soon as possible minimizes the negative impact of this condition on one's life.
Based on the International League Against Epilepsy’s definition of drug-resistant epilepsy, and guidelines from the National Association of Epilepsy Centers, Epilepsy Foundation of Michigan recommends the following:
If you still don’t have complete seizure control after trying two appropriate and well-tolerated antiseizure medications OR seeing a general neurologist for 12 months…
it’s time to seek a consultation with an epileptologist, preferably at a comprehensive epilepsy center.
In addition, it's important to know what you should expect from your epilepsy care, in terms of quality. Based on the American Academy of Neurology's 2014 Epilepsy Quality Measurement Set, the doctor who you see for your epilepsy should do the following:
- tell you what types of seizures you have and ask how often you have them
- offer an intervention if seizures are not fully controlled
- tell you what type of epilepsy you have or order tests to determine this
- ask you about medication side effects and offer options for addressing them
- talk to you about how to stay safe
- provide screening for psychiatric disorders, such as depression or anxiety disorder
- talk to you about pregnancy, hormones, and birth control if you’re a woman of childbearing age
- refer you to a comprehensive epilepsy center if medicines aren’t controlling your seizures
If you have questions about how to access appropriate epilepsy care, please call us at 800-377-6226.
How You Can Help
- Share Your Story About High Prescription Costs: High costs of antiseizure medications can be a major barrier to accessing the treatment that's best for you. If you've had a hard time getting the medication you need because of high costs (or if you've had to go without other basic needs in order to pay for your medication), please let us know. You can share your story on the Michigan Coalition for Affordable Prescriptions website. This coalition is being led by Epilepsy Foundation of Michigan. Your stories will help us and other coalition members to promote public policies that reduce medication costs.
- Join our Speak Up, Speak Out (SUSO) Advocacy Network: Use this tool to join our network of Speak Up Speak Out advocates. Becoming part of this growing grassroots advocacy group ensures that you are kept up-to-date on issues that affect the 100,000 people with epilepsy and their families living in Michigan and the 2.9 million in the United States. Many of our public policy priorities (and those of the national office of Epilepsy Foundation) involve access to specialty care.
- Volunteer: A big part of accessing appropriate epilepsy care involves simply learning what appropriate epilepsy care is. The sooner people with epilepsy are told about how and when to seek specialty care, the better. With this in mind, we want to get the word out to newly or recently diagnosed people with epilepsy. One way to do this is to provide educational handouts about the Foundation and appropriate epilepsy care to general neurologists and primary care physicians who can then share this with their patients who've just learned they have epilepsy. Volunteers are needed to help identify and deliver these materials to physicians' offices across the state. Contact Russ Derry at firstname.lastname@example.org or 800-377-6226 ext. 1302 to find out more.
- Michigan Pediatric Epilepsy Project - Epilepsy Foundation of Michigan has partnered with Children's Special Healthcare Services, the Michigan Department of Health and Human Services, Pediatric Epilepsy Centers, and others to improve access to care for children and youth with epilepsy who live in rural and medically-underserved areas. If you would like to schedule a training or workshop for a group of parents, a school, or any professional audience, please contact Cindy Handford at 800-377-6226 ext. 1234 or email@example.com. Cindy can cover a variety of topics including, seizure recognition and first aid, epilepsy diagnosis and treatment, transition planning, epilepsy self management, and much more.
- Telemedicine - Access, via telemedicine, to pediatric epileptologists at Beaumont Children's Hospital, Children's Hospital of Michigan, Helen DeVos Children's Hospital, and C.S. Mott Children's Hospital is available in a number of rural and underserved areas, including Alpena, Cheboygan, Harbor Springs, Iron Mountain, and Saginaw. To learn more, contact Cindy Handford at 800-377-6226 ext. 1234 or firstname.lastname@example.org.
- Epilepsy.com - The website of the national office of Epilepsy Foundation has a wealth of information on epilepsy diagnosis, treatment, and self-management, including the following resources that relate to accessing appropriate epilepsy care:
- Refractory Epilepsy - what is "refractory" or "drug-resistant" epilepsy?
- The Comprehensive Epilepsy Center - What are comprehensive epilepsy centers, what do they offer, and when should patients be seen at one?
- State Scorecards - ratings of U.S. states based on access to specialty care and use of newer antiseizure medications
- Quality Care and Quality of Life - information on what constitutes high-quality epilepsy care
- Aim for Zero - information on why it's important to "Aim for Zero" seizures to reduce the risk of Sudden Unexpected Death in Epilepsy (SUDEP)
- #Dare to Go the Distance in Your Journey with Epilepsy - encouragement, suggestions, and resources to help you take charge of your epilepsy care
- Epilepsy Across the Spectrum: Promoting Health and Understanding (Chapter 4 - Health Care: Quality, Access, and Value) - This chapter provides an in-depth look at the current state of epilepsy care and what needs to be done to improve quality, access, and value.
1 Engel J Jr. What can we do for people with drug-resistant epilepsy? The 2016 Wartenberg Lecture. Neurology. 2016 Dec 6;87(23):2483-2489.