June 1, 2019

Witeh Esoe
12655 Germane Ave Unit 2
Apple Valley, MN 55124
Email: witeh.esoe@und.edu
Phone: 651-307-7488

The Honorable Senator Tina Smith

95 University Avenue W.
Minnesota Senate Bldg, Room 2205
St. Paul, MN 55155
651-296-1802

Dear Senator Smith,

My names are Witeh Esoe. I am a Doctor of Nursing student at the University of North Dakota. I
am advocating for epilepsy. According to the Center for Disease Control and Prevention [CDC]
(2019), is a disorder of the brain that causes recurrent, unprovoked seizures. Although epilepsy a
widely recognized health condition, it is poorly understood and often leads to stigma in the
community, workplace, and in schools. Despite the program in medicine and technology,
epilepsy remains a formidable barrier to education, employment, and overall quality of life. In
2015, 1.2% of the US population had active epilepsy) which is about 3.4 million people with
epilepsy nationwide: 3 million adults and 470,000 children. In 2019, there were 53,700 reported
cases of epilepsy in MN.

The management of epilepsy involves the control of seizures, management of side effects, and
maintaining a good quality of life. The antiepileptic drugs used provides short relief and not an
ultimate cure. Sometimes these seizures occur when one anti-epilepsy drug is substituted for
another. Therefore, patients will consistently rely on drugs and healthcare services to manage
this condition. In 2010, Rep. Marsha Swails (DFL-Woodbury), sponsored HF1320, which
required the Board of Pharmacy to adopt interchangeability rules for epilepsy drugs based on
standards set by the U.S. Food and Drug Administration.

Additionally, the management of epilepsy comes alongside economic burdens, which does not
only affect the patient but also extends to their families. Moreover, these patients are also limited
to job opportunities due to their condition and experience emotional torture because of public
discrimination. Shockingly, employers claim that these people with the condition may cause
huge medical insurance premiums and less working hours.

With these in mind, as an advocate and a member of the epilepsy foundation community, I am
humbly requesting you to support $11.5 million for the CDC and Health Promotion’s Epilepsy
Program in 2020 to direct and support activities that improve quality of life and care for people
affected by epilepsy. The House Appropriations Committee has recommended $11.5 million, and
I plead the Senate to do the same. These funding programs will help epilepsy patients to have
access to quality, affordable, and patient-centered care through the Affordable Care Act (ACA)
Marketplace and Medicaid expansion.

Furthermore, it will help to build safer communities for people living with epilepsy, protect
disability rights, end stigma and discrimination, enhance the quality of life by increasing public
awareness and knowledge of epilepsy through education and direct training of school personnel,
students, first-responders, and law enforcement. As well as improving epilepsy self-management,
reaching underserved populations, providing research opportunities, expanding data collection to
track epilepsy incidence, and enhance access to care.

Thank you for your time and I look forward to hearing from you.

Sincerely,

Witeh Esoe
 Fact sheet for Epilepsy
Asking That You:

 Improving access to and coverage of quality care and essential services

 The protection of the rights of individuals with disabilities.
 Funding for epilepsy programs, research, and a cure

Facts About EPILEPSY

 Epilepsy is the fourth most common neurological condition after migraine, stroke, and
Alzheimer’s disease.
 1 in 10 people will have a seizure during their lifetime, and one in 26 will develop
epilepsy.
 The World Health Organization estimates there are 65 million people with epilepsy
throughout the world.
 4 million people in the United States have active epilepsy—3 million adults and 470,000
children.
 In United States, 20% of cases develop epilepsy before the age of five, and 50% develop
before the age of 25.
 Epilepsy is also increasingly associated with the elderly, and there are as many cases of
epilepsy in those 60 years of age and older as there are in children 10 years of age and
under.
 In about 70% of cases, the cause of a person’s epilepsy is unknown. Of the remaining
30% of cases, the following are the most frequent causes:

 Brain tumor and/or stroke

 Head trauma, especially from automobile accidents, gunshot wounds, sports
accidents, and falls and blows
 Poisoning such as lead poisoning, and substance abuse
 Infections such as meningitis, viral encephalitis, lupus erythematosus and, less
frequently, mumps, measles, and diphtheria
 Maternal injury, infection, or systemic illness that affects the developing brain of the
fetus during pregnancy

 Between 25 and 50% of people living with epilepsy will also be diagnosed with a
psychiatric disorder, which may include depression, anxiety, attention deficit disorder
(ADD), personality disorders, and psychosis. The most common psychological disorders
in adults with epilepsy are mood and anxiety disorders, and the most common among
children are attention deficit hyperactivity disorder (ADHD), anxiety, and depression.
 (70%) of people with epilepsy are able to control their seizures with the help of
medications or other treatments.
 Other Fact

 More than one out of 1,000 people with epilepsy die from Sudden Unexpected Death in
Epilepsy (SUDEP) each year, and for those with poorly controlled seizures, the risk
increases to one out of 150.
 In Minnesota, in order to drive, a person with epilepsy must present a doctor's
certification that he or she has been seizure-free for 3 months and a report that indicates a
favorable prognosis for episode free control of the person’s condition [MINN. R. §
7410.2500(3) (2011)].
 Reinstatement of driver license will require a favorable prognosis by a physician [MINN.
R. 7410.2500(4)]. If the episode was caused by medication, or was the first episode, the
driver must submit a physician's statement every 6 months for a year [MINN. R.
§7410.2500(5A)-(5B)]

Summary
 Support investments in public health programs that help build safer communities, end
stigma associated with epilepsy, and educate community leaders.
 Create awareness that benefits everyone with epilepsy and other chronic health
conditions and disabilities
 Promotion biomedical innovation through incentivizing development of new therapies and the
promotion of research to gain a better understanding of causes, consequences, and outcomes, and,
ultimately, cures for all the epilepsies; and
 Safeguarding disability rights and ending discrimination through awareness.

Supporting Organizations
 American Association of Neurological Surgeons
 Citizens United for Research in Epilepsy
 Epilepsy Foundation of America
 Centers for Disease Control and Prevention.
 World Health Organization

CONTACT: Witeh Esoe, BSN, RN witehesoe@und.edu 651 307 7488

 References

American Association of Neurological Surgeons. (2019). Epilepsy. Received from.

https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Epilepsy

Born, P. (2017). ACA exchange competitiveness in Florida. Risk Management and Insurance

Review, 20(2), 189-210.

Center for Disease Control and Prevention. (2019). Epilepsy data and statistics. Retrieved from

https://www.cdc.gov/epilepsy/data/

Citizens United for Research in Epilepsy. (2019). What is epilepsy. Retrieved from

https://www.cureepilepsy.org/what-is-epilepsy/

Child Neurology Foundation. (2019). Epilepsy. Retrieved from

https://www.childneurologyfoundation.org/disorder/epilepsy

Epilepsy Foundation of America. (2019). Epilepsy Foundation Public Policy Advocacy.

Retrieved from https://www.epilepsy.com/make-difference/advocacy

Healthy People 2020. (2109). Epilepsy across the spectrum: Promoting health and understanding.

Retrieved from https://www.healthypeople.gov/2020/tools-resources/evidence-based-

resource/epilepsy-across-spectrum

Thurman, D. J., Kobau, R., Luo, Y. H., Helmers, S. L., & Zack, M. M. (2016). Health-care

access among adults with epilepsy: The U.S. National Health Interview Survey, 2010 and

2013. Epilepsy & behavior: E&B, 55, 184–188. doi:10.1016/j.yebeh.2015.10.028

World Health Organization. (2019). Epilepsy: Key facts. Received from

https://www.who.int/en/news-room/fact-sheets/detail/epilepsy