ACTION ALERT

TAKE 2 - PLEASE TAKE IMMEDIATE ACTION

BACKGROUND:

THANK YOU for all your efforts to educate your legislators about the
Epilepsy Patient Safety legislation and the potential impact it has on
epilepsy patients and their families.  We have had an excellent turn
out of contacts this past week; however, legislators need to continue
to hear from you about this issue.

Last week we faced a unique situation.  Our policy language was
included in the HHS appropriations bill, but was removed before the
bill was passed out of committee.  We have been asked to come to a
compromise with the Iowa Pharmacy Association before our issue will be
considered.

As you know, this legislation is very important to people living with
epilepsy because nearly half of all epilepsy patients are very
brittle. Even a 10% change in absorption of the medication in the
blood level can cause seizures or worst of all, sudden death. This
legislation will ensure epilepsy patients are not exposed to an
increased risk of seizures.

The Epilepsy Foundation would like the bill to require a pharmacist to
get prior approval from both the patient and the prescriber before any
changes in medication are made. It is critical for epilepsy patients
to have access to the exact drugs that have been proven to work for
them, whether those drugs are new or old, name-brand or generic. Even
switching between two versions of the same generic antiepileptic drug
(AED) can cause unexpected seizures.

If a pharmacist is allowed to substitute one drug for another, the
person with epilepsy is placed at risk of breakthrough seizures, ER
visits, admission to hospital, seizure related injuries, and even
death. As you can see, the human and financial costs of these
occurrences have the potential to be monumental. It is the American
Academy of Neurology's (AAN) position that physicians should be able
to prescribe the AED that will work best for the person with epilepsy
without fighting barriers such as possible drug substitutions.

The way the law stands now, even if the physician disallows
substitutions on the initial filling of the prescription, pharmacies
can switch to a different formulation of the drug when the
prescription is refilled.  Nothing requires that the doctor approve
that switch or even know about it. Any changes to AEDs can have a
significant impact on epileptic patients and could cause extreme side
effects such as breakthrough seizures.

TAKE ACTION x2:

Legislative language that addresses this issue and requires prior
approval was removed from the Health and Human Services (HHS) bill;
HOWEVER, there is a commitment from the legislature to work out a
compromise on this issue. The HHS Committee members MUST HEAR from the
epilepsy community on this issue just as they have from the
opposition. The HHS leaders have taken a huge leadership role in
offering the language and agreeing to work out a compromise on the
issue. They need our help to keep moving the issue forward. Each of
these members needs to hear from us to be able to understand the
importance of this legislation to epilepsy patients and their families
in Iowa.

Please contact YOUR Legislator and the legislators listed below with
the following messages AS SOON AS POSSIBLE BEFORE Tuesday, April 8.

Please always remember to personalize your message by telling your
story.

Message To Legislators:

EMAIL SUBJECT LINE: Please Address Patient Safety Legislation this
Session

I understand the epilepsy patient safety legislation was in the HHS
appropriations bill, but removed last Thursday in an effort to work
out a compromise on the issue. I would like to take this opportunity
to remind you of why this issue is important to patients and families
faced with epilepsy and ask you to support our efforts of patient
safety and protection by putting patients first.

First, thank you for your attention to this issue. I understand it is
not an easy one for lawmakers, but it is a significant issue for
patients and families who deal with this difficult to manage disease
everyday.  Nearly half of all epilepsy patients are very brittle
patients. This means that they require very regimented drug doses,
medications to be administered at specific times as well as specific
diets, sleep and activity requirements.

A small change in the absorption of an anti-epileptic drug in the
blood can cause a breakthrough seizures and even sudden death.  On
behalf of the Epilepsy Foundation and our family, we are asking you to
put patients first. The physician is in the best position to make the
decision about a patient's medication needs as they know the patient's
medical history and the pharmacist does not.

This legislation is critical to the thousands of Iowans living with
epilepsy because it will help ensure patient safety and reduce the
risk of seizures in managed patients thereby reducing the financial
burden on the health care system.  In addition, several peer reviewed
publications and studies have noted that a slight change in variations
for epilepsy patients can increase the risk of seizures or cause
sudden death.

On behalf of our family, who has been so devastatingly effected by
epilepsy, we thank you for your attention to this important patient
safety and access to care. We are asking you to please support the
efforts of the Epilepsy Foundation and include strong language that
protects epilepsy patients from undue harm or death.  We sincerely
thank you for your consideration of this issue that impacts our
family.

Contact Information:

Senator Jack Hatch - Des Moines

jack.ha...@legis.state.ia.us

Senator Keith Kreiman - Bloomfield

keith.krei...@legis.state.ia.us

Senator Amanda Ragan - Mason City

Amanda.ra...@legis.state.ia.us

Senator Jim Seymour - Woodbine

James.seym...@legis.state.ia.us

Senator David Johnson - Ocheyedan

David.john...@legis.state.ia.us

Senate Switchboard Number: 515-281-3371

Representative Ro Foege - Mt. Vernon

Ro.Fo...@legis.state.ia.us

Representative Elesha Gayman - Davenport

Elesha.Gay...@legis.state.ia.us

Representative Ako Abdul-Samad - Des Moines

Ako.abdul-sa...@legis.state.ia.us

Representative Eric Palmer - Oskaloosa

Eric.pal...@legis.state.ia.us

Representative Dave Heaton - Mt. Pleasant

Dave.hea...@legis.state.is.us

Representative Polly Granzow - Eldora

Polly.gran...@legis.state.ia.us

Representative Walt Tomenga - Johnston

Walt.tome...@legis.state.ia.us

Representative Linda Miller - Bettendorf

Linda.mil...@legis.state.ia.us

House Switchboard Number: 515-281-3221

TALKING POINTS:

·         This legislation is NOT about switching, it is about the
Doctor being informed and a part of the decision making process of
what medicine a patient should be on.

·         EF is not against generics, we are for the medicine that
works and doctors need to make that decision.

·         The American Academy of Neurology has evidence-based
guidelines on appropriate usage of AEDs in treating epilepsy.

·         Restricting access and switching antiepileptic drugs harms
patients and costs money.

·         Patients with epilepsy face unique medical challenges, thus
they need to be carefully managed.

·         The "fail first" approach to AED use is inappropriate and
high-risk and for what benefit?

Note: For more information on these talking points, please see
attached document.

Please contact us if you have any questions.

Thank you for your immediate attention to this important request!

Vic Verni                                              Dale
Todd                                            Threase Harms

Executive Director                           President,
Board                              Contract Lobbyist

vve...@efncil.org
dtoddpa...@aol.com                    thre...@advocacystrategies.us