How ESRD and ALS Affect Medicare

How ESRD and ALS Affect Medicare text overlaying image of a senior and younger persons hands holdingWhen you think of Medicare you likely think of the health insurance system designed for people over 65, but there are some cases where younger people are also on Medicare. Some people with disabilities who are younger than 65 can get Medicare. These people must have been getting disability payments from Social Security for at least 24 months or have End Stage Renal Disease (ESRD) or Amyotrophic Lateral Sclerosis (ALS, also called Lou Gehrig’s disease). So, if you have one of these conditions, it’s important to not only look into and compare all of your plan choices, but also make sure you sign up for Medicare at the right time.

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ESRD

End-stage renal failure, also called end-stage renal disease (ESRD), is the last and final stage of chronic kidney disease. In this stage, the kidneys’ function has gotten so deficient that they can’t function on their own anymore. A person with end-stage renal failure needs dialysis or a kidney donation to live longer than a few weeks. As kidney failure worsens, patients may feel a wide range of symptoms. Some of these are tiredness, drowsiness, less urination or not being able to pee, dry skin, itchy skin, headache, weight loss, nausea, bone pain, changes in skin and nails, and being easy to bruise.

 

If you have been told you have end-stage renal disease and need a kidney donation or are getting dialysis, you can sign up for Medicare on the first day of your fourth month of dialysis. If you are taking part in a program to help you do your own dialysis, you will be qualified for Medicare right away. However, if you stop doing self-dialysis and start going to a dialysis center, your Medicare benefits will stop and you will have to go through 4 months of dialysis before you can start getting them again. 

ESRD Medicare Coverage

A doctor must tell you that you have ESRD before you can get ESRD Medicare. Also, you must have enough work history to qualify for Social Security Disability Insurance (SSDI) or Social Security retirement benefits. You can also apply based on your spouse’s or parent’s work history. Depending on your treatment plan, Medicare for ESRD will start when:

 

  • If you start a training program for home dialysis, which is sometimes called “self-dialysis,” you can get Medicare as of the first day of the first month of the program. Before your third month of dialysis, you must start the program. Your doctor must also say that they think you can finish the program and that you will keep doing home dialysis after the program is over.
  • If you get dialysis at a center for inpatients or outpatients, you can get Medicare starting on the first day of the fourth month you get dialysis. For instance, if you start dialysis on May 10, your ESRD Medicare coverage can begin on August 1.
  • If you need a kidney transplant, you can get Medicare starting the month you are admitted to a Medicare-approved hospital for the transplant or for health services you need before the transplant. If you need a kidney transplant, you can get Medicare starting the month you are admitted to a Medicare-approved hospital for the transplant or for health services you need before the transplant.

What’s Covered?

As long as you meet the requirements, you won’t have to pay a premium for Medicare Part A, but you will have to pay a monthly premium and meet a yearly deductible for Medicare Part B coverage, just like everyone else who has Medicare. Parts A and B of Medicare will pay for:

 

  • Dialysis
  • Kidney transplant
  • Transplant drugs after a covered transplant
  • Dialysis-related drugs

Part B covers outpatient dialysis, which is why you should sign up for Medicare as soon as possible so that this expensive treatment is covered. Immunosuppressant drugs used after a kidney donation are now covered by Medicare, thanks to a law passed in 2019. Before this law was passed, many Medicare recipients couldn’t afford to pay for these drugs out of pocket. 

ALS

Amyotrophic lateral sclerosis is a motor neuron illness that kills people. It is defined by the loss of nerve cells in the brain and spinal cord over time. It is often called Lou Gehrig’s disease after the famous baseball player who died from it. ALS is one of the most debilitating diseases that affect how nerves and muscles work. ALS does not affect the brain or the senses, like being able to see or hear. It is also not infectious. There is no cure for this sickness right now. People of any race or ethnicity are most likely to get ALS between the ages of 40 and 70, though it can happen at a younger age. 

ALS Medicare Coverage

If you have been identified with ALS, you will automatically be enrolled in Medicare the month you start getting disability payments from Social Security. If you have Amyotrophic Lateral Sclerosis (ALS), you are automatically enrolled in Medicare the first month you get Social Security Disability Insurance (SSDI) or a train disability annuity.

 

Once you know you have ALS, you should fill out an application for SSDI or a railroad disability annuity and send it to Social Security or the Railroad Retirement Board. Before you can start getting disability payments, you will have to wait five months. Make sure to say that you have ALS in a clear way on your application for disability payments. Once you’ve waited five months, your Medicare will start the same month as your unemployment payments. Coverage includes services like:

 

  • Physical and occupational therapy
  • Speech-language therapy
  • Medicines used in intravenous infusions

After you sign up for Parts A and B, you can choose between a Medicare Supplement Plan and a Medicare Advantage plan. You can save money on Part B out-of-pocket costs with a Medicare Supplement Plan.

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Medicare Costs Under 65

Original Medicare (Parts A and B) costs the same for both people over 65 and people under 65 who are disabled, but the prices of Medicare Supplement plans are very different in big ways. Most of the time, Medicare supplement plans cost a lot more for disabled Medicare recipients under 65 than for Medicare recipients over 65. Many people with Original Medicare buy Medicare Supplement insurance to cover care that isn’t covered by Medicare Parts A (hospitalization and inpatient care) and B (outpatient care). Parts A and B cover about 80% of the costs, so you need extra insurance.

 

Most states do not offer Medicare Supplement insurance to Medicare recipients under the age of 65, or they are too expensive for this age group. For example, a Medicare Supplement Plan G insurance costs $179 a month for a 65-year-old woman who doesn’t smoke and lives in the Tampa, Florida, area. However, if she were under 65, that same plan would cost $479 a month.

 

There are no federal laws that say insurance companies have to sell Medicare Supplement policies to people under 65, and most states do not have laws about how much the plans can charge Medicare recipients under 65. Insurance companies don’t want to sell these plans to people with disabilities because they are high-risk customers. Because of this, Medicare Supplement Plans for Medicare recipients under 65 can be hard to find and can cost a lot more than in other states.

States with guaranteed issue and pricing regulations

In these states, Medicare Supplement policies must be sold to Medicare users under 65 with disabilities. These states also require insurance companies to keep policy costs low.

States with some Medicare Supplement availability

In these states, insurers must offer at least one Medicare Supplement insurance to people under 65 who are already on Medicare.

 

States where all 10 plans are available but cost more

In these states, insurance companies are required to offer all Medicare Supplement Plans to people under 65, but the states let insurance companies charge high rates.

 

States with variable availability and alternatives

In these places, Medicare enrollees who are under 65 and have a disability and don’t qualify for a full Medicare plan are not required to get a supplemental policy. However, these states have other kinds of insurance, like high-risk insurance pools, that can cover them.

 

States with no requirements

These states are not required to offer Medicare Supplement Plans to Medicare recipients under 65.

 

 

Finding the Right Medicare Option

Knowing that having ESRD or ALS won’t stop you from joining Medicare or getting coverage for your treatment should put your mind at ease. Depending on your condition, you may have to wait for coverage, but once you are ready for Medicare, you will have choices for more help. For example, you can sign up for a Part D plan to cover your prescriptions, and you can buy a Medicare Supplement Plan to help pay for your Part B out-of-pocket costs, since Part B only covers 80% of your medical bills.

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About The Author:
Cassandra Love

With over a decade of helpful content experience Cassandra has dedicated her career to making sure people have access to relevant, easy to understand, and valuable information. After realizing a huge knowledge gap Cassandra spent years researching and working with health insurance companies to create accessible guides and articles to walk anyone through every aspect of the insurance process.

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