How ESRD and ALS Affect Medicare

How ESRD and ALS Affect Medicare text overlaying image of a senior and younger persons hands holding When 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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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. 


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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How Does Medicare Handle ALS Coverage

Amyotrophic Lateral Sclerosis (ALS) affects as many as 30,000 Americans in any given year. The risk of ALS increases with age, most commonly developing in those between the ages of 40 and  mid-60s. So, since an estimated 51% of people who have it are older than 70 years, it’s important to understand how Medicare covers this disease, in case it affects your life. 

ALS Explained illustration of a brain with a hand holding a magnifying glass over it

ALS, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Around 5 to 10% of all ALS cases are familial, meaning they have been inherited from a parent. The familial form usually only requires one parent to be a carrier of the disease, which is caused by mutations in more than a dozen genes.

ALS will often start in the hands, feet, or limbs, and then spread to other parts of the body, and will usually begin with muscle twitching, weakness, or slurred speech. As it advances, nerve cells are destroyed, creating weaker muscles that will eventually affect chewing, swallowing, speaking, and breathing. Unfortunately, there is no cure for ALS. 

Risk Factors

  • Family members with the disease-  5-10% of people with ALS inherited it from a parent.
  • Age– Risk increases with age; diagnosis is most common between the ages of 40 and mid-60s.
  • Sex- More men under the age of 65 develop ALS than women in the same age group, but after age 70, the difference between the sexes disappears.
  • Genetics– Some studies examining the entire human genome have found many similarities in the genetic variations of people with familial ALS and some people with non-inherited ALS
  • Smoking

ALS & Medicare

If you are diagnosed with ALS, no matter if you’re 65 or not, you can enroll in Medicare once you are also receiving Social Security disability benefits. In the past, if you were younger than 65 and were diagnosed with ALS, you were required to undergo a 5-month waiting period to get your  Medicare and SSDI benefits. As of July 23, 2020, though, people with ALS no longer have to wait five months, and are eligible for automatic enrollment into Medicare Parts A and B the first month they receive SSDI.

Extra Coverage Options

illustration of hands over a person

If you’re a Medicare enrollee with ALS, you can choose a Medicare Part D Plan when you become eligible for Medicare, which will help with the cost of prescription drugs. But, you also have the option of purchasing a Medicare Supplement Plan, which can help pay for the things that Medicare does not, including the 20% coinsurance that you will have to pay out-of-pocket for every Part B expense. One of these plans could cover 100% of your Part A coinsurance and hospital costs, as well as 100% of Part B coinsurance and copayments, for one low monthly premium price. 

There are 10 different Medicare Supplement Plans to choose from, each offering different coverage options and rates. It’s worth looking into a Medicare Supplement Plan to save as much money as you can, so speak to an EZ agent for all of your options. EZ’s agents work with the top-rated insurance companies in the nation and can compare plans in minutes for you at no cost. To get free instant quotes for plans that cover your current doctors, simply enter your zip code in the bar on the side, or to speak to a licensed agent, call 888-753-7207.

What Exactly Is ALS?

Think back to 2014. Do you remember the ice bucket challenge that went viral? In case you need your memory jogged, throughout that year, people were tagged on social media by their friends or family and challenged to dump ice cold water over their heads. To some it was just a challenge, but it began as much more than just a bit of fun. It was originally intended to raise awareness and money for ALS. Amyotrophic lateral sclerosis, or ALS, is a motor neuron disease that affects 30,000 people in the U.S., with 1-3 new cases per 100,000 people every year. But what exactly is ALS? And who is most at risk for developing it? 

ALS Explainedthe nerves of a brain all connected together

ALS, also called Lou Gehrig’s disease, is characterized as a group of progressive neurological diseases that cause dysfunction in the nerves that control muscle movement. The nerve cells in the brain degenerate and eventually die, which stops the communication between the nervous system and the voluntary movements of the body. Once the motor neurons are gone, muscles become weak and then nonfunctional. The disease can be fatal because the nerves that control breathing can die.


Signs of the disease usually appear when a person is in their 50s or 60s, but can appear earlier or later. Early signs of ALS include:

  • Slight muscle weakness
  • Clumsy hand movements
  • Tripping and falling due to muscle weakness
  • Difficulty swallowing
  • Impaired and/or loss of function of the tongue, mouth, and/or voice box
  • Leg cramps during the night
  • Uncontrolled twitching of muscles
  • Stiffness in the legs
  • Coughing

As ALS progresses, symptoms become more widespread, and some muscles become paralyzed, while others are weakened or unaffected. In late-stage ALS, most muscles that affect voluntary movements are paralyzed.

Who Is Affected By ALS?

ALS can affect anyone of any age, gender or race, but studies show that people between the ages of 40 and 70 are most affected. 

Unfortunately, the exact underlying cause of ALS is unknown, but researchers have made some speculations as to what could cause it, including a disorganized immune system, a chemical imbalance, or mishandling of proteins by nerve cells. It is thought that the environment can play a role as well. There have been some possible links between ALS and mechanical or electrical trauma, high levels of exercise, high levels of agricultural chemicals and high levels of heavy metals.

mri machine
An MRI can help diagnose ALS.

There are 2 types of this disease, one of which affects far more people:

  • Sporadic ALS, which occurs randomly with no family history, and accounts for 90-95% of cases.
  • Familial ALS, which is inherited and runs in the family. It accounts for 5-10% of cases. 

Genetic testing can be done if there is a suspected familial cause of ALS; there are other tests that can also be done including:

  • Electromyography (EMG), which measures the muscles’ response to triggers.
  • Muscle biopsy, which examines muscle tissue under a microscope.
  • MRI, so doctors can examine organs and tissues in the brain and spinal cord.
  • Blood and urine tests
  • Spinal tap

Most people will live for about 3-5 years after they experience their first signs of ALS. The life expectancy of those affected is:

  • 20% will live 5 years or more after diagnosis
  • 10%, or 1 in 10 people, will live more than 10 years following a diagnosis.
  • 5% will live for 20 years
  • Survival past 20 years is possible, but rare. Stephen Hawking was diagnosed at age 21, and lived to age 76.

Currently, there is no cure or effective treatment to stop the progression of ALS, which is why the ice bucket challenge took the internet by storm. More research needs to be done to discover effective treatments for those suffering with ALS. 

stethoscope with a blood pressure cuff next to it
It is important to get monitored every 3-4 months to manage ALS.

While there is no cure or treatment for ALS, those who receive a diagnosis of this disease will need to schedule clinic visits every 3-4 months to monitor changes. ALS is a complex disease, but with the help of doctors, physical and occupational therapists, counselors, and a nutritional plan, people with the disease can manage the symptoms and slow the progression. All of this can be expensive, so having a good insurance plan will help keep those with ALS from being buried under medical bills

If you are looking for a comprehensive health insurance plan that will ease the burden of medical bills while you’re dealing with a health condition, EZ can help. Our trained licensed agents work with the top-rated insurance companies in the country, so we can compare all available options for your needs. To get free instant quotes, enter your zip code in the bar above, or to speak with a local agent, call 888-350-1890. No obligation, just free quotes.