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Medicare eligibility for ALS and ESRD patients

Patients with Lou Gehrig's Disease or kidney failure can receive Medicare regardless of age, and without 24 months of disability

Eligibility for Medicare includes persons over age 65, those with disabilities, and those with two specific diseases: End Stage Renal Disease (ESRD) or Amyotropic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease).

Key takeaways

Eligibility for Medicare includes persons over age 65, those with disabilities, and those with two specific diseases: End Stage Renal Disease (ESRD) or Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease).

Individuals under age 65 with disabilities other than ALS or ESRD must have received Social Security Disability benefits for 24 months before gaining eligibility for Medicare. A five-month waiting period is required after a beneficiary is determined to be disabled before a beneficiary begins to collect Social Security Disability benefits.

People with ESRD and ALS, in contrast to persons with other causes of disability, do not have to collect benefits for 24 months in order to be eligible for Medicare. The same Medicare benefits apply for individuals with ESRD and ALS as they do for all other beneficiaries.

With these benefits, if you have been diagnosed with ALS or ESRD you gain the safety and benefit of essential health care coverage through Medicare, assuming you or your spouse have a work history that makes you eligible for Medicare (or, if the patient is a child, Medicare eligibility is based on a parent’s work history). The requirements for Medicare eligibility for people with ESRD and ALS are:

  • ESRD – Generally 3 months after a course of regular dialysis begins (ie, on the first day of the fourth months of dialysis), but coverage can be available as early as the first month of dialysis for people who opt for at-home dialysis.
  • ALS – Immediately upon collecting Social Security Disability benefits, which occurs five months after being classified as “disabled”.

Qualifying for Medicare with End Stage Renal Disease

Special consideration has been given to patients diagnosed with end-stage renal disease. You will become eligible for Medicare on the first day of your fourth month of dialysis treatment. However, if you begin a self-dialysis training program you can become Medicare-eligible immediately. Importantly, if you decide to stop the self-dialysis program and start going to a dialysis center instead, your benefits will stop, and you will have to wait until you complete the four months of dialysis treatment to receive benefits again.

Patients receiving a kidney transplant may also be qualified for Medicare coverage as soon as they become hospitalized for the transplant.

For most enrollees, Medicare Part A has no premium, but Medicare Part B does have a premium ($144.60/month for most enrollees in 2020). Enrollees can select only Medicare Part A if they wish, but it’s important to understand that outpatient dialysis is covered under Part B, so it’s generally essential for people with ESRD to enroll in both parts of Medicare.

In 1972 the United States Congress passed legislation authorizing eligibility for persons diagnosed with ESRD under Medicare. The extension of coverage provided Medicare for patients with stage five chronic kidney disease (CKD), as long as they qualified under Medicare’s work history requirements.  The ESRD Medicare program took effect on July 1, 1973, and was the first time that Medicare had extended benefits to people under age 65.

For ESRD patients who have a private health insurance policy in place in addition to Medicare, the private insurance (either a group or individual plan) will be the primary payer for the first 30 months, after which Medicare will become primary.

If you qualify for Medicare strictly because of ESRD (ie, you’re not yet 65 or otherwise disabled), you’re eligible for Medicare for 12 months following the last month of dialysis treatment you receive (if you no longer need dialysis but did not have a kidney transplant), or 36 months after a kidney transplant.

Legislation has been introduced in 2019 that would extend Medicare coverage for immunosuppressant drugs following a kidney transplant. If enacted, the bill would allow Medicare to cover these essential drugs for the life of the transplanted organ, instead of ceasing after 36 months — which is what currently happens unless the patient qualifies for Medicare due to age or another disabling factor. Non-compliance with immunosuppressant therapy can result in organ rejection, which means the patient ends up back on dialysis and/or needing another kidney transplant (both of which are much more expensive than the cost of immunosuppressant drugs, and would send the person back onto Medicare).

Most Medicare Advantage plans do not accept new enrollees who have ESRD (the exceptions Medicare Advantage ESRD Special Needs Plans, although these are not widely available). But this will change as of 2021 under the terms of the 21st Century Cures Act; Medicare Advantage plans will be guaranteed issue for all Medicare beneficiaries as of 2021, including those with ESRD.

For the time being, however, most people who qualify for Medicare because of ESRD are enrolled in Original Medicare (Medicare Part A and B). But if you’re already enrolled in a Medicare Advantage plan at the time that your ESRD is diagnosed, you can keep your plan, and if you have a successful kidney transplant but still qualify for Medicare because of your age or another disability, you may be able to enroll in a Medicare Advantage plan.  And if there’s a Medicare Advantage Special Needs Plan (SNP) available in your area for people with ESRD, you’ll have that as an option.

People who enroll in Original Medicare have the option to purchase a Medicare Part D plan to cover prescription drugs. These plans are guaranteed-issue when you first enroll in Medicare, and there’s an annual election period (October 15 to December 7) during which you can switch to a different Part D plan, regardless of your medical history. But the other form of supplemental coverage, Medigap, isn’t always available to people who are under 65 and enrolling Medicare as a result of a disability, including ESRD.

There are 27 states that require Medigap plans to be guaranteed-issue for ESRD patients when they first become eligible for Medicare, although the premiums are typically higher than they would be if the applicant was enrolling in Medicare due to turning 65. In the other 23 states, however, a Medigap insurer can reject an application from an under-65 enrollee who has become eligible for Medicare as a result of ESRD. This can result in significant out-of-pocket expenses for ESRD patients, who have to pay 20 percent of the Medicare-approved charge for each dialysis session if they don’t have supplemental coverage that picks up the extra cost (there’s no cap on out-of-pocket costs for Original Medicare).

Medicare has a 60-page booklet all about Medicare coverage of dialysis and kidney transplants.

Medicare and ALS (Lou Gehrig’s Disease) coverage

As with ESDR, if your disability is amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease), you don’t have to wait 24 months for Medicare coverage. You can get Medicare as soon as you become entitled to SSDI (there’s a five-month waiting period after applying for disability benefits before they are awarded).

In 2001, Congress passed landmark legislation to add ALS as a qualifying condition for automatic Medicare coverage. The regular 24-month waiting period was eliminated for ALS patients receiving SSDI. Medicare eligibility now begins simultaneously with cash benefits, approximately five months after an individual gains Social Security disability status.

Enrollees with ALS can select a Medicare Part D plan when they become eligible for Medicare, which will help with the cost of prescription drugs. But as is the case with ESRD, people who are under 65 and enrolled in Medicare due to ALS might not have access to a Medigap plan, depending on where they live. There are 29 states that have at least some sort of guaranteed issue requirements for Medigap when a disabled Medicare beneficiary is under age 65, although insurers may still be able to charge higher premiums for enrollees under the age of 65 (in most of the remaining states, there is either a high-risk pool option for Medicare beneficiaries under age 65, or at least some insurers voluntarily offer Medigap plans to people under 65).

But unlike ESRD, there are no rules limiting Medicare Advantage access for people with ALS. If you have ALS and you’re enrolled in Medicare Parts A and B, you can choose to enroll in a Medicare Advantage plan that’s available in your area. Choosing between Original Medicare (plus Medigap, if the plans are available to you) and Medicare Advantage is a personal decision — here are some questions to help you figure out which option might be a better fit. But if you’re in a state where Medigap is not available to you as an under-65 enrollee, the out-of-pocket limits on Medicare Advantage plans might be appealing, as Original Medicare (without a Medigap plan) does not limit out-of-pocket costs.

In 2014, The ALS community reacted strongly to a CMS announcement that some medical devices used by ALS patients would no longer be covered by Medicare.  Medicare does cover basic speech generation devices, but since 2001, patients have been able to pay the additional cost to get “upgradable devices” that can be used to perform additional tasks like opening doors, switching on lights, and connecting to the internet.  As technology has advanced, so has the use of these devices.

In good news for ALS patients, CMS announced in November 2014 that they had decided to hold off on enforcing the rule regarding upgradable devices, so ALS patients could still get Medicare funding for the basic cost of such devices, as long as they paid for any upgrades themselves. There was an ongoing concern, however, that CMS could implement the new rules at a later date.

But the Steve Gleason Act of 2015 provided Medicare funding for communication devices through 2018. And in 2018, the Steve Gleason Act was approved as part of a budget bill, providing permanent Medicare funding of communication devices — including eye-tracking technology and speech generating devices — and the required accessories.

Application for Social Security Disability Insurance

SSA has an expedited procedure for processing terminal illness cases to ensure that a favorable decision can be made expeditiously. The term for this type of case is “TERI” case. A person with ALS, particularly if advanced symptoms are present, will want to advise SSA, at the time of application, that TERI case procedures are appropriate.

Louise Norris is an individual health insurance broker who has been writing about health insurance and health reform since 2006. She has written dozens of opinions and educational pieces about the Affordable Care Act for Her state health exchange updates are regularly cited by media who cover health reform and by other health insurance experts.

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