Medicare is the national health insurance program for which all Social Security recipients who are either over 65 years of age or permanently disabled are eligible. Thanks to tireless ALS advocacy work, this incudes people living with ALS, regardless of age.

People living with ALS who receive Social Security Disability Insurance (SSDI) are eligible for Medicare. There’s much to know about what is and isn’t covered. Thanks to the Center for Medicare Advocacy (CMA), many informational resources are available through the Medicare and ALS Access Program which can be accessed in more detail from this webpage.

Medicare in Summary 

Medicare is the national health insurance program available to:

• Persons aged 65 and older and their spouses.
• Persons eligible for SSDI. (Thanks to ALS advocacy efforts, people with ALS are eligible for Medicare benefits due to disability immediately following an application for SSDI due to ALS. Learn more.)

Coverage under Medicare is like that provided by private insurance companies: it pays a portion of the cost of medical care. Often, deductibles and co-insurance (partial payment of initial and subsequent costs) are required of the beneficiary.

Medicare has Two Main Parts: Part A and Part B

Part A (Hospital Insurance) helps pay for:  

• Care in hospitals as an inpatient, skilled nursing facilities, hospice care and some home health care. This coverage is free to SSDI recipients.

Part B (Medical Insurance) helps pay for:  

• Services provided by doctors and other health care practitioners, home health care services, durable medical equipment and some hospital outpatient care services. There is a monthly premium for this coverage.

In addition to premiums, Medicare beneficiaries share the cost of the program with the government through deductibles and co-payments for many of the services.

What is Medicare Advantage (Part C) and Part D?  

Medicare beneficiaries have the option to receive their Medicare benefits through private health insurance plans. These private insurance options are authorized by Medicare Part C, which is also called Medicare Advantage (MA). These are typically managed care plans that:

• Require patients to obtain services only from certain providers;
• May offer reduced premiums, deductibles and coinsurance payments, and/or additional benefits not offered in traditional Medicare; and
• May also include Part D -Part D is the Medicare prescription drug benefit.

Help With Medicare Co-Pays And Other Expenses  

Beneficiaries with limited incomes may qualify for assistance through federal and/or state programs, such as Medicare Savings Programs, to help cover some or all of Medicare’s required co-payments and prescription drug costs. 

Separately, Medicare supplemental insurance, or “Medigap,” can be purchased from private companies to cover some of Medicare’s co-insurance and deductibles. Medigap policies are specifically designed to fill the ‘gaps’ in Medicare coverage, but depending on the state, Medigap plans may not be available to those under the age of 65 or be priced fairly.

Medicare Open Enrollment

Every year from October 15 to December 7, Medicare beneficiaries are able to reevaluate their coverage and make changes to their plan. During this time, known as Medicare Open Enrollment, you can change coverage between Original Medicare and Medicare Advantage plans and make changes to your Part D Prescription Drug coverage. Coverage changes outside of this timeframe are only available if there is a qualifying life event.

Select the links below to view webinars on Medicare Open Enrollment and understanding your Medicare benefit:

• Open Enrollment and Insurance Options for People Living With ALS (youtube.com)
• Understanding Your Medicare Benefit (youtube.com)

Additional resources and support are available through the Patient Advocate Foundation (PAF). Click here to access their website that offers Medicare support in four languages:

• Click here to access their Guide to Navigating Medicare Resource in English: Making the Most of Your Medicare Benefits: A Guide to Navigating Medicare With Confidence - Education Resource Library (patientadvocate.org)
• Guide to Navigating Medicare Resource in Spanish: Aprovechar al máximo sus prestaciones de Medicare: una guía para navegado Medicare con confianza - Education Resource Library (patientadvocate.org)

For more information on the Patient Advocate Foundation, including the number for their ALS Insurance and Benefits Resource Line, click here.