1. Continuity of Care in PENNSYLVANIA
Ms. Gretchen Knaub
Regional Director
Epilepsy foundation western/central pa
june 6, 2017

2. About Gretchen knaub Experienced advocate for epilepsy awareness
Serves as Regional Director for the Epilepsy Foundation of Western/Central Pennsylvania
Advocates for both children and adults with epilepsy at the local, state, and federal levels
Previously provided therapeutic staff support at Philhaven, a non-profit behavioral health organization in south central Pennsylvania

3. What is EPILEPSY?
Epilepsy is a neurological condition caused by sudden brief changes in the brain’s electrical balance, which causes seizures.
For this reason, epilepsy is often called a “seizure disorder”
The most common treatment for epilepsy/seizure disorders is antiepileptic medications. Many people with epilepsy are able to control their seizures with medications. However, the side effects of medications can be severe, and some people with epilepsy do not respond well to medications and have little or no control of seizures.

4. Epilepsy Treatment
Patients with neurological conditions, like epilepsy, often work extensively with their health care providers to find the right medication for them.
Neurological disorders, especially epilepsy, are precarious.
Medication for epilepsy is not often interchangeable.
For example, medications for seizures don't have a lot of overlap.
They generally do different things to the brain, have different side effect profiles, and interact with other conditions differently.

5. Threats to TREATMENT PLANS IN pennsylvania
Many people with epilepsy in Pennsylvania, and others living with neurological disorders and chronic health conditions, are currently at risk of losing access to the treatments that are keeping their health stable.
These people are being forced off their medications through a process known as non-medical switching. Insurers and PBMs force patients off of their medications through a variety of tactics including:
Hiking out-of-pocket costs associated with certain drugs;
Removing certain drugs from coverage altogether; and
Placing restrictions around access to certain drugs.
These benefit changes oftentimes occur mid-plan year when a patient must remain on their current insurance plan.

6. living with Epilepsy
People with epilepsy are dependent on their critical treatments to maintain the quality of life.
Individuals with epilepsy depend on their medications to keep their health stable in order to retain their drivers licenses, and in many cases, their jobs.
Any barrier to access to these treatments, including those instituted by their health care payers, risks these individuals’ health and very livelihood.

7. Non-Medical Switching IMPACT on people living with epilepsy
Forced switches of treatment plans for non-medical reasons can result in adverse and potentially irreversible side effects for people living with epilepsy.
Oftentimes treatment switches are associated with health derailment, disease progression and devastating side effects.
Epilepsy patients can experience breakthrough seizures as a result of treatment switches.
These health outcomes often lead to a need for increased doctors visits, hospital visits, medical testing, and additional medications to control side effects.

8. PATIENT EXPERIENCE: kiley
Kiley, has had epilepsy since she was 2 and 1/2 years old. She is now 16.
She has tonic clonic, absence seizures, and simple partial seizures that effect, among many other things, her ability to walk at times.
She also suffers from memory loss, depression and social anxiety disorder as a result of her epilepsy.
For a while, her seizures were under control, thanks to her medication.
One day, she began to have facial ticks, and making involuntary eye movements and noises.
At this onset it was discovered that she had been switched to a generic form of her medication. She, her mother, or her doctor, had never been informed of the change.
When questioned, her pharmacist informed her that each time she got her prescription filled, Kiley could be getting the pills from different generic manufacturers.
Eventually, after a long fight with the insurance company, Kiley was able to get back on her initial medication.
However, her family now pays 4x more a month than they had previously, to ensure that she gets the medication that keeps her condition stable.

9. PATIENT EXPERIENCE: Alexandra
Alexandra, has had epilepsy since she was 3 years old.
She has tonic-clonic seizures, but has been seizure free for several years.
She suffered through seizures over 60 times within the first 75 days of onset of epilepsy.
She only had seizures when she sleeps. As a result, her mother and father took rotating shifts throughout the night to monitor her.
Her seizures affected every aspect of her life. She had speech, language, and motor skills difficulties.
Doctors have changed Alexandra’s medication in the past for efficacy reasons. It is very important for her to be monitored after a switch because the medication change usually brings on a seizure. When a seizure begins Alexandra must immediately have a rescue medication administered to her, as more usually follow.
In the past insurer practices have caused a medication switch without Alexandra, her mother, or her doctor being notified. Thankfully her mother caught the switch before it was too late.
If Alexandra’s mother had not caught the medication change, the switch could have triggered a tonic-clonic seizure that they were not prepared for.