CT House of Representatives passes House Bill 5384 to the Senate

See the Epilepsy Foundation of Connecticut’s letter of support for H.B. 5384 below:

May 8, 2018
Legislative Office Building
300 Capitol Ave.
Hartford, CT 06106

Dear XX:

On behalf of the Epilepsy Foundation and our local affiliate, Epilepsy Foundation of Connecticut, we encourage you to support House Bill 5384.  This bill would establish new transparency requirements for state agencies and various entities that impact the prices of prescription medication.

The Epilepsy Foundation is the leading national voluntary health organization that speaks on behalf of the at least 3.4 million Americans with epilepsy and seizures. The local affiliate, Epilepsy Foundation of Connecticut, advocates and provides services for the over 60,000 individuals who have epilepsy throughout the state.  Collectively, we foster the wellbeing of children and adults affected by seizures through research programs, educational activities, advocacy, and direct services. Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. Approximately 1 in 26 Americans will develop epilepsy at some point in their lifetime. For the majority of people living with epilepsy, epilepsy medications are the most common and most cost-effective treatment for controlling and/or reducing seizures, and they must have meaningful and timely access to physician-directed care.  Epilepsy medications are not interchangeable and treatment of epilepsy is highly individualized.  There is no “one size fits all” treatment option for epilepsy, and the response to medications can be different for each person.

Like many of our partners in the patient advocacy community, we are concerned about high cost-sharing that makes it hard for people living with epilepsy and other chronic conditions to access the medications and services they need. We support policies that create greater transparency in the health care system and that reduce or limit cost-sharing for the medications and services that our community relies on to maintain their quality of life. However, we also urge lawmakers to carefully consider any possible impact this legislation would have on biomedical innovation.

We are supportive of transparency requirements that truly give health care consumers information they need to make decisions. The cost-sharing burden for medications for an individual is determined by a complex process and consumers need the full picture, not just one aspect of a complicated structure that impacts what they pay for medications. Effective policies, like those included in HB 5384, should take into account all stakeholders, not just manufacturers and patient advocacy groups, but also pharmacy benefit managers (PBMs), insurers, and pharmacies.

The Epilepsy Foundation would like to emphasize that proposals to address the cost of prescription medication should not threaten the progress of biomedical innovation, which is exceptionally important to the epilepsy community. Currently, there is no cure for epilepsy, and one third of people with epilepsy live with uncontrollable seizures—and many more live with debilitating side-effects from medications. We are committed to accelerating the development and approval of new therapies, especially to benefit those in our community with difficult to control seizures and those who experience significant side effects from existing therapies. Manufacturers spend millions of dollars over several years on research and development of potential therapies, many of which never make it to the market. We need an environment that encourages investment in biomedical innovation.

The Epilepsy Foundation and the Epilepsy Foundation of Connecticut encourage your support for HB 5384 to establish transparency requirements for entities that impact the price of prescription medication. The patient voice is critical in the conversation on the value of health care and we hope you will consider any potential impact on biomedical innovation as you move forward with HB 5384. Please do not hesitate to contact Michael Finley, CT Government Relations, at 860-346-1924 or michael@epilepsyct.com or Abbey Roudebush, Government Relations Manager, at 301-918-3784 or aroudebush@efa.org, with any questions or concerns.


Linda Wallace
Executive Director, Epilepsy Foundation of Connecticut

Philip M. Gattone, M.Ed.
President & CEO, Epilepsy Foundation

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