Foundation Asks Medicare Bill Conferees to Consider Epilepsy Issues

11/21/2003

From: Peter Van Haverbeke, 301-918-3772 or Julie Ward, 301-918-3764; both of the Epilepsy Foundation

WASHINGTON, Nov. 21 -- The Epilepsy Foundation today issued a statement to congressional Medicare Bill conferees restating its position that the concerns of people with epilepsy be addressed in the final legislation. Chief among these concerns is the matter of restrictive formularies, an issue that can make the difference between the successful medical management of the condition and serious life-altering, even life-threatening consequences.

"We would like to see the benefits structured to ensure that we've not created a benefit for some at the expense of others," said Eric R. Hargis, the Foundation's president and CEO. "Effective treatment for people with epilepsy means having access to the medications their doctors prescribe for them. We don't want pharmaceutical benefit managers making medical decisions."

The Epilepsy Foundation Statement

The Epilepsy Foundation, on behalf of the 2.5 million Americans with epilepsy, strongly supports the addition of an affordable prescription drug benefit available to all through the Medicare program, so long as the new benefit meets the following principles:

-- The prescription drug benefit must ensure that people with epilepsy have access to the medications their doctors prescribe as best for them.

-- The new benefit must be structured in a way that ensures that we have not created a benefit for some at the expense of others.

Access to the right medications for epilepsy can make the difference between living in the community, being employed and leading a healthy and productive life; and bed rest, hospitalizations and even death. Often, people with epilepsy need access to the newer medications, because they have fewer side effects, work in a different way, and may represent a better treatment option than older less expensive drugs. Medications for epilepsy are not interchangeable; treatment decisions must be individualized, and the prescription must be taken on a chronic basis at regular intervals. The consequences of denying the appropriate medication for an individual with epilepsy is serious and can include injury or debilitating side effects, emergency room visits, and even hospitalization or other types of costly medical interventions.

We call upon Congress to strengthen provisions in the final conference committee agreement to ensure that the following critical items are addressed.

-- Drug Formularies: Strengthen the consumer protections to ensure that people will have access to all medically necessary medications. Retreating from the standards established in the Medicaid statute for formularies will be harmful for people with serious and chronic health conditions and disabilities.

-- Medicaid "Wrap": Continue to allow Medicaid to serve as the secondary payor for people who are eligible for both Medicaid and Medicare, and adopt access and appeal provisions in Medicare to mirror the protections that individuals on Medicaid now have. Millions of people with epilepsy and other chronic health conditions, who now depend on Medicaid to pay for the prescription drugs they need to maintain their basic health, will lose access to medications unless changes are made to the conference agreement. By permitting the development of Medicare formularies that may restrict access to needed drugs and by prohibiting Medicaid from serving as a secondary payer for medications not on the formulary, the agreement could force people with epilepsy to forego medications they need for less effective or no treatment. People with epilepsy need access to the full range of medications legally prescribed by their physicians, and they need the Medicaid due process provisions to ensure prompt access to those treatments.

-- The Medicare Drug Benefit should be enhanced. The benefit, as a whole, is substantially less generous than all other Medicare benefits (80 percent/20 percent) and the vast majority of private and government-sponsored plans that cover prescription drugs. Additionally, the bill has a considerable "gap" in coverage between $2,200 in drug costs and $3,600 of out-of-pocket drug expenses.

-- The Asset Test in the conference report could block almost four million Medicare beneficiaries with incomes of less than 135 percent of poverty from getting help with their prescription drug premiums, deductibles, and co-payments. This test is unnecessary and burdensome on individuals with epilepsy and other chronic health conditions.

Now is the time to provide a prescription drug benefit. We urge you to make these improvements to the conference committee agreement to ensure that people with epilepsy are not harmed by a bill that does not meet their needs.

The Epilepsy Foundation works to ensure that people with seizures are able to participate in all life experiences; and to prevent, control and cure epilepsy through research, education, advocacy and services