As Congress debates major healthcare legislation, this is an important opportunity for people with narcolepsy (PWNs) to make our voices heard. Many of us would be struggling to function without expensive medications that are unaffordable without insurance coverage. The Affordable Care Act (ACA) established important protections for PWNs and others with chronic illnesses and banned insurance providers from discriminating based on health status. It also made it easier for people without employer-provided insurance to buy health insurance coverage and made health insurance more affordable for lower income workers. The legislation proposed by the House and the Senate would allow states to strip away these much-needed protections and dramatically cut Medicaid, which provides services for people with disabilities, including PWNs.

The ACA prohibits insurance companies from refusing to cover PWNs and others with “pre-existing conditions.” Insurers are also not allowed to make people with pre-existing conditions pay substantially more for their insurance, and cannot refuse to pay for treatment for chronic conditions. The ACA also abolished lifetime and annual spending limits on insurance coverage.

In states that expanded Medicaid coverage, the ACA also helps cover healthcare costs for low-income workers with no access to employer provided health insurance. Poor mothers and their children, seniors, and people with disabilities (which can include PWNs) are also covered by Medicaid. Many school systems use Medicaid funds to cover legally mandated special education services for students with disabilities (IEP and 504 plans, for example.). Both of the bills currently being debated would make deep cuts to the Medicaid program.

Under the ACA, insurance plans on the healthcare market place are required to cover certain essential services, such as prescription drugs (also mental healthcare, maternity care, etc.). The Senate and the House bills give states the option to change the services that are considered “essential.” States could also restrict protections for PWNs and others with pre-existing conditions. Insurers in these states would be able to impose lifetime and annual limits on services that are no longer considered “essential” (for example, mental healthcare or prescription drug coverage). According to the nonpartisan Congressional Budget Office, this would cause costs to rise sharply for PWNs and others who need comprehensive insurance coverage.

By contacting your members of Congress, you can help to stop the new healthcare bills from stripping away important protections for PWNs. Your voice is important. Call or email your Senators and Representatives to ask them to oppose any healthcare legislation that does not require equal treatment of PWNs and others with pre-existing conditions. Ask your Congressperson to help PWNs and others with disabilities through greater funding for Medicaid. If your member of Congress is opposed to the current healthcare bills, ask them to work on drafting new healthcare legislation that addresses problems in the ACA without repealing vital protections for PWNs. Please continue to contact your Senators and Representatives regularly and repeatedly, so they know how important this issue is to their constituents. It’s a simple action, but it could make a BIG difference for the narcolepsy community.

Use this link from NORD (National Organization for Rare Disorders) to send a message to your Senator or to find your Senator’s phone number.