Epilepsy? Why YOU should care about protecting access to health care

By Ruchelle Buenaventura

Before July 4th, Senate Republican leaders are planning to hold a vote on legislation that would strip away health insurance protections for millions of Americans -- including many with epilepsy.

Photo By Joshua Roberts/Reuters

Photo By Joshua Roberts/Reuters

"Many of the proposed replacements provisions for the Affordable Care Act (ACA) would turn back the clock on health insurance, and allow insurers in the individual market to drop coverage for essential health benefits like prescription drugs and preventive care. Those with chronic conditions would again be left without comprehensive coverage and quality health care because of exceedingly high costs.

But it gets worse: this "repeal and replace" plan would also restructure the entire Medicaid program, instituting caps that could lead to nearly a trillion dollars in cuts. With reduced funding, states would be left with no choice but to cut services or limit eligibility - threatening the health care of 36.8 million children and

1 million people with epilepsy who rely on Medicaid.

We are running out to time to convince key senators that these kind of 'reforms' will hurt our community."

- Angela Epilepsy Foundation Ostrom, Vice President of Public Policy & Chief Legal Officer

Support from Virginia Senators, what about other states?

Although Virginia senators Mark Warner (D) and Tim Kaine (D) both believe in protecting access to health care, we must still spread awareness to our families and friends with representatives in other states across the nation. 

For people with epilepsy, disabilities or chronic illness, long-term services and supports are often inaccessible because of health status or priced based on an individual’s health condition at such a high rate that the coverage is economically impossible. An essential element of health care reform is ensuring that vulnerable populations have access to coverage that meets their long term care needs.

What to tell congress?

(sponsored by Epilepsy Foundation of America)

  • Protect Access to Affordable Health Care!

    Take action to write to your senate and find your elected officials! Explain how this would affect 1 million people with epilepsy who are dependent on medicaid. Tell your stories about medication costs, hospital visits, and other challenges that epilepsy can bring. It can be an expensive condition and decreasing funding can leave people deranged from their normal lives. 

    Find your elected officials here
  • Protect Federal Funding for Epilepsy Programs & Research: The White House budget plan for Fiscal Year 2018 calls for billions in cuts to the NIH and CDC -- limiting the reach of CDC programs that help people live well with epilepsy and NIH research that leads to better treatments and a cure. Take action and tell Congress to continue strong funding for the CDC and NIH.

  • Support Investments at the FDA to Bring Promising Therapies to Market Sooner: Congress is currently considering the Food and Drug Administration (FDA) User Fees Reauthorization Act, which would ensure that the FDA has the resources it needs to review and approve new medicines and devices in a timely manner. Encourage Congress to support the user fee agreements so the FDA can fulfill its mission of protecting the public health and accelerating biomedical innovation.

  • Protect the Americans with Disabilities Act: Tell Your Legislators to Oppose the ADA Education and Reform Act of 2017:  
    Last year, our community narrowly won a victory for disability rights when the ADA Education and Reform Act did not pass the House. The bill would have weakened protections for people living with disabilities by making it easier for businesses to avoid complying with the accessibility requirements of the Americans with Disabilities Act.

    Now, this bad bill is back. In January, House members introduced the ADA Education and Reform Act of 2017 (H.R. 620), which would shift the burden for ADA compliance from business owners to people with disabilities.