Public Policy Advocacy

Become an Advocate for the Epilepsy Community
The Epilepsy Foundation actively advocates at the state and federal level for public policies that support research and innovation, and to improve access to quality care for people living with epilepsy. Join us as we raise awareness with policy makers about the critical need for timely access to the right medications, and research that leads to new therapies, especially for the more than one million people living with epilepsy who experience intractable or uncontrolled seizures or have significant adverse effects to medication.

Sign up for 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 2.2 million in the United States.

Share with us your name, address and email address, and we will send you advocacy action alerts and monthly updates.  Your address will allow us to identify your Member of Congress, and alert you to advocacy opportunities in your area.  Share your story with elected officials, in support of advancing the policy priorities of the epilepsy community, and stay up to date on policy developments through our monthly Highlights from the Hill e-newsletter.

Epilepsy Foundation of America's Advocacy Page - Visit to learn more about national public policy priorities.

View Epilepsy Foundation of Michigan's full public policy agenda.


Marijuana, CBD Oil, and Epilepsy
Approximately one-third of people with epilepsy are not able to achieve seizure control despite the best medical, dietary, and surgical therapies. The need for better treatments for children and adults with epilepsy is enormous. Those who live with uncontrolled seizures live in continual risk of serious injuries and loss of life.
Cannabidiol (CBD) is a non-psychoactive component of the cannabis plant. Delta-9-tetrahydrocannabinol (THC) is the psychoactive component. Non-euphoric, CBD oil is derived from a cannabis plant that is high in CBD and low in THC, therefore resulting in no “high” to the user. There is research, including animal studies and pharmaceutical-led investigational studies, to support that CBD may have significant therapeutic benefits. While doctors agree that further research is needed, many researchers also agree that marijuana products should be offered to patients who have failed or are adversely affected by existing therapies. They would also agree that the Drug Enforcement Agency should change the classification of marijuana and its constituents from a Schedule 1 drug so that more clinical trials can be conducted. You can view the position of the national Epilepsy Foundation here.
The Epilepsy Foundation of Michigan believes that nothing should stand in the way of patients gaining access to potentially life-saving treatment. If a patient and their healthcare professionals feel that the potential benefits of medical marijuana for uncontrolled epilepsy outweigh the risks, then families need to have that legal option now -- not in five years or ten years. For people living with severe uncontrolled epilepsy, time is not on their side. This is a very important, difficult, and personal decision that should be made by a patient and family working with their healthcare team.
While medical marijuana is legal in the state of Michigan, there is still a gap in the availability of edible and non-smokeable forms.  This is especially important for children with Dravet Syndrome and other severe epilepsy syndromes who have found some relief through the use of CBD oil.  This has been well publicized by Paige Figi, whose daughter Charlotte had tried many therapies until she was helped by the so called Charlotte’s Web strain of marijuana which has been bred to be high in CBD oil.
In 2015, the Michigan House passed House Bill 4210 that would amend the Michigan Medical Marihuana Act to allow the legal use of marihuana-infused products for medical purposes.  The Michigan Senate has not taken action on SB 0140.  If the bills are not passed by the end of 2016, the bills will die and action in the future will require re-introduction.
The Epilepsy Foundation of Michigan supports HB 4210 and SB 0140, which amend the Michigan Medical Marihuana Act to allow edible and topical forms of medical marijuana for adults and children, in particular CBD oil.

Access to Medication-Medicaid
In 2004, the Legislature enacted a law that Michigan Medicaid could not subject medications for the high-risk conditions of mental illness, epilepsy, HIV-AIDS, cancer, and organ replacement to prior authorization.

Potentail delays often last at least two months and require a consumer to fail on two other "preferred" medications before possibly getting the one that the doctor originally prescribed.  The Epilepsy Foundation of Michigan does not support pre-authorization programs because of the possible delays in treatment.

In 2015, the Michigan Department of Health and Human Services adopted a common formulary for Medicaid HMOs.  In two public meetings, DHHS made clear it planned to protect access to these drugs in 2016 but in January 2017 those protections might end. Ending the protections could have devastating consequences for people with epilepsy as well as other conditions.

We believe that treatment decisions should be made by the physician in partnership with the patient.  Therefore, we are asking for budget boilerplate to protect the five original protected populations-mental health, epilepsy, HIV-AIDS, cancer, and organ replacement-from prior authorization delays in all of Medicaid, at least through 2017.

The Epilepsy Foundation of Michigan urges the Legislature to adopt the boilerplate regarding the 5 protected classes of medication, and urges people to communicate that to their legislators. 

Increase the Number of School Nurses in Michigan
A child with a seizure disorder may face challenges in school.  Epilepsy is a neurological condition characterized by seizures, but seizures may take different forms.  On many occasions school behavior is misinterpreted and misdiagnosed because school officials as well as teachers don’t understand epilepsy.
While epilepsy may require the school to make accommodations for the consequences of this special health condition, it may lack the internal resources to support these medical accommodations.  Lack of availability of school nurses challenge the school to provide for children with seizure disorders.
Michigan ranks as having the lowest number of school nurses per pupils in the nation.  This includes all the states and the territories In fact; Michigan’s ratio of school nurses to students is 1 nurse for every 6,607 students according to a new survey.  The National Association of School Nurses and Healthy People 2010 recommend 1:750 for well students; more where there are children with chronic or complex needs.
It is estimated that nearly 1 in 5 children and youth have some type of chronic health condition; nearly half of whom could be considered disabled.  School nurses are part of the solution and provide an important safety need for our vulnerable children and adolescents.  Schools are struggling to meet the needs of students with chronic conditions, including epilepsy, leaving many families struggling to keep their children healthy, in school, and ready to learn.

The Epilepsy Foundation of Michigan supports efforts that would lead to an increase in the number of school nurses in Michigan.

Seek Changes in Driving while Intoxicated Law (PA 543 of 2012)
In order to obtain a driver's license in the State of Michigan, a person must not have had an incident of loss of consciousness in the previous six months or 12 months for a connercial license.  For people with epilepsy, this means that individuals who continue to have seizures cannot and should not drive.  For most of the people with epilepsy, control of seizures depends on taking medication.

All anti-seizure medications have side effects and can cause drowsiness.  However, patients learn to take them at night, and over time, they adjust to them.

Recently, changes were made in the State's "operating a vehicle while intoxicated" law that includes virtually any drug in the US Pharmacopeia. This would include all drugs used to treat epilepsy and mental illness among others.  This law could discourage patients from complying with their medication regimes which could have devasting consequences.

The Epilepsy Foundation of Michigan urges changes in the statue so that persons driving with medications, if prescribed pharmaceuticals, are not at risk of impaired driving charges. 

Treat Mental Health Conditions like Other Health Conditions (Mental Health Parity)
Persons living with epilepsy may find themselves dealing with mental illness, and they may be more likely than other people to experience emotional changes.
People with epilepsy have a higher rate of depression than the general population; some estimates suggest this rate may even be twice as high.  Women, overall, are more likely than men to experience depression.
Studies show that up to 60 percent of people living with epilepsy are also living with a mood disorder. The legislature recently adopted legislation to cover services for those on the autism spectrum, many of whom have seizures.
The Epilepsy Foundation of Michigan urges legislators to support parity coverage for all mental disorders.