Medicare eligibility for ALS, ESRD patients

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

  • March 16, 2015

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).

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 and ESRD you gain the safety and benefit of essential healthcare through Medicare, assuming you or your spouse have a work history that makes you eligible for Medicare. The requirements for Medicare eligibility for people with ESRD and ALS are:

  • ESRD – Generally 3 months after a course of regular dialysis begins or after a kidney transplant
  • 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.  Here’s how you can qualify if you have begun dialysis treatment.

You will become eligible for Medicare on the first day of your fourth month of dialysis. 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, your benefits will stop, and you will have to wait until they 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. 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.

Most Medicare Advantage plans do not accept new enrollees who have ESRD.  For this reason, 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 you 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.  In addition, 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.

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.

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, and for now, ALS patients can still get Medicare funding for the basic cost of such devices, as long as they pay for any upgrades themselves.  CMS is still considering this issue, and a final rule is expected in mid-2015.

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 the patient has , that TERI case procedures are appropriate.