ALS Diagnosis

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 includes 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 coinsurance (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, which is the Medicare prescription drug benefit.

Help With Medicare Co-Pays And Other Expenses  

Beneficiaries with limited incomes may be eligible for help from federal and/or state programs (“Medigap") to cover some or all of Medicare’s required co-payments and to help with prescription drug costs.

Medigap health insurance can be purchased to cover some of Medicare’s coinsurance and deductibles.

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.

Signing Up for Medicare

Once you’ve been diagnosed with ALS, the real work begins. The costs of medical care and assistive technology can be staggering, even if you have health insurance. If you don’t have health insurance, though, it can be difficult to know where to start.

Thanks in large part to The ALS Association’s advocacy, people who have been diagnosed with ALS are immediately eligible for Medicare, which can substantially offset the cost of quality medical care.

It isn’t easy to navigate the Medicare system, but it’s important that people living with ALS start this process as early as possible to minimize the impact the disease can have on their finances.

What you need to know about signing up for Medicare:

• To sign up for Medicare, a patient must first qualify for Social Security Disability Insurance (SSDI) and receive benefits.
• The standard 24-month waiting period is waived for people diagnosed with ALS because the disease progresses so quickly.
• As soon as you receive SSDI benefits, you’ll receive Medicare coverage.
• It can take up to five months for patients to be approved by Medicare and receive their Medicare card in the mail.
• People living with ALS can choose original Medicare, (Medicare Part A or Medicare Part B), or Medicare Advantage Plans (Medicare Part C). Part C plans are offered by private companies and provide similar benefits to government-administered plans.
• Your Medicare policy should pay for home health providers, which can help you live more independently with ALS. Coverage for nursing homes (for the first 100 days) and hospital facilities is also part of all Medicare coverage plans.

Medicare Rx Drug Benefit Open Enrollment 

During the Medicare open enrollment period, those currently enrolled in a Medicare prescription drug plan have the option to switch plans or remain in their current plan.

Those who didn’t enroll in the benefit when they first became eligible for Medicare also may enroll at this time, although these individuals may be subject to a late enrollment penalty. A benefits counselor, such as those at Area Agencies on Aging, may be able to help you determine which plan is best for you.

It’s important that people living with ALS who have enrolled in the Medicare drug benefit take the time to review their prescription drug plan options, even if they’re satisfied with their current plan. Many plans have made important changes to their benefits for the upcoming year, including changes to monthly premiums, the drugs that are covered or included on the plan formulary, the costs of drugs, coverage in the “donut hole” (coverage gap) and other policies that impact access to particular drugs.

If you don’t review your policy, you may end up paying more than you have to for crucial medications.

In addition, new plans with different options are now available in many areas of the country. Therefore, your current plan may or may not be the best plan for you, so we encourage you to take the time to review your options and find the plan in your area that best meets your needs. And as you review your plan options, we strongly recommend that you evaluate plans considering a range of factors, such as coverage policies and your drug needs, in addition to monthly premiums.