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Getting Medicare Under Age 65

Medicare is usually available to those over the age of 65. However, there are a few other circumstances in which the Medicare eligibility age is lower.

People under 65 with certain disabilities qualify for Medicare enrollment. Likewise, Medicare policy allows people of any age who have End-Stage Renal Disease (ESRD) to participate in the Medicare program. ESRD is permanent damage to the kidneys that necessitates a transplant or dialysis. You usually cannot join a Medicare Advantage plan if you have ESRD, but there are some exceptions.

There are some 88 other diseases that may make a person eligible to receive Medicare before age 65 under a “compassionate allowance” (or CAL). The number of diseases eligible was increased by 38 in early 2010, which was the first time diseases were added to this list since it began in 2008.

Originally, the list consisted of 25 rare diseases and 25 cancers. The new list was developed through holding public outreach hearings in conjunction with the National Institutes of Health, the Alzheimer’s Association, the National Organization for Rare Disorders, and many other organizations. Information from one of the four previous hearings was also used when adding diseases to the list. The expanded list now includes brain disorders and diseases that often afflict children. One disease on the list is Early Onset Alzheimers, which afflicts tens of thousands of people in the United States. A complete list of these diseases and conditions is shown below.

There may be new diseases added in the future. Check with the Social Security Administration (SSA) for new additions to the list.

The CAL program will assist with the speedy processing of applications and is done through the Social Security Administration. These compassionate allowances are designed to quickly identify those eligible and get them benefits in a speedy fashion.

The list of diseases added in 2010 includes:

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  • Alstrom Syndrome
  • Amegakaryocytic Thrombocytopenia
  • Ataxia Spinocerebellar
  • Ataxia Telangiectasia
  • Batten Disease
  • Bilateral Retinoblastoma
  • Cri du Chat Syndrome
  • Degos Disease
  • Early-Onset Alzheimer’s Disease
  • Edwards Syndrome
  • Fibrodysplasia Ossificans Progressiva
  • Fukuyama Congenital Muscular Dystrophy
  • Glutaric Acidemia Type II
  • Hemophagocytic Lymphohistiocytosis (HLH), Familial Type
  • Hurler Syndrome, Type IH
  • Hunter Syndrome, Type II
  • Idiopathic Pulmonary Fibrosis
  • Junctional Epidermolysis Bullosa, Lethal Type
  • Late Infantile Neuronal Ceroid Lipofuscinoses
  • Leigh’s Disease
  • Maple Syrup Urine Disease
  • Merosin Deficient Congenital Muscular Dystrophy
  • Mixed Dementia
  • Mucosal Malignant Melanoma
  • Neonatal Adrenoleukodystrophy
  • Neuronal Ceroid Lipofuscinoses, Infantile Type
  • Niemann-Pick Type C
  • Patau Syndrome
  • Primary Progressive Aphasia
  • Progressive Multifocal Leukoencephalopathy
  • Sanfilippo Syndrome
  • Subacute Sclerosis Panencephalitis
  • Tay Sachs Disease
  • Thanatophoric Dysplasia, Type 1
  • Ullrich Congenital Muscular Dystrophy
  • Walker Warburg Syndrome
  • Wolman Disease
  • Zellweger Syndrome

The original list of diseases eligible for a compassionate allowance are:

  • Acute Leukemia
  • Adrenal Cancer—with distant metastases or inoperable, unresectable or recurrent
  • Alexander Disease (ALX)—Neonatal and Infantile
  • Amyotrophic Lateral Sclerosis (ALS)
  • Anaplastic Adrenal Cancer—with distant metastases or inoperable, unresectable or recurrent
  • Astrocytoma – Grade III and IV
  • Bladder Cancer—with distant metastases or inoperable or unresectable
  • Bone Cancer—with distant metastases or inoperable or unresectable
  • Breast Cancer—with distant metastases or inoperable or unresectable
  • Canavan Disease (CD)
  • Cerebro Oculo Facio Skeletal (COFS) Syndrome
  • Chronic Myelogenous Leukemia (CML)—Blast Phase
  • Creutzfeldt-Jakob Disease (CJD)—Adult
  • Ependymoblastoma (Child Brain Tumor)
  • Esophageal Cancer
  • Farber’s Disease (FD)—Infantile
  • Friedreichs Ataxia (FRDA)
  • Frontotemporal Dementia (FTD), Picks Disease—Type A, Adult
  • Gallbladder Cancer
  • Gaucher Disease (GD)—Type 2
  • Glioblastoma Multiforme (Brain Tumor)
  • Head and Neck Cancers—with distant metastasis or inoperable or uresectable
  • Infantile Neuroaxonal Dystrophy (INAD)
  • Inflammatory Breast Cancer (IBC)
  • Kidney Cancer—inoperable or unresectable
  • Krabbe Disease (KD)—Infantile
  • Large Intestine Cancer—with distant metastasis or inoperable, unresectable or recurrent
  • Lesch-Nyhan Syndrome (LNS)
  • Liver Cancer
  • Mantle Cell Lymphoma (MCL)
  • Metachromatic Leukodystrophy (MLD)—Late Infantile
  • Niemann-Pick Disease (NPD)—Type A
  • Non-Small Cell Lung Cancer – with metastases to or beyond the hilar nodes or inoperable, unresectable or recurrent
  • Ornithine Transcarbamylase (OTC) Deficiency
  • Osteogenesis Imperfecta (OI)—Type II
  • Ovarian Cancer—with distant metastases or inoperable or unresectable
  • Pancreatic Cancer
  • Peritoneal Mesothelioma
  • Pleural Mesothelioma
  • Pompe Disease—Infantile
  • Rett (RTT) Syndrome
  • Salivary Tumors
  • Sandhoff Disease
  • Small Cell Cancer (of the Large Intestine, Ovary, Prostate, or Uterus)
  • Small Cell Lung Cancer
  • Small Intestine Cancer—with distant metastases or inoperable, unresectable or recurrent
  • Spinal Muscular Atrophy (SMA) – Types 0 And 1
  • Stomach Cancer—with distant metastases or inoperable, unresectable or recurrent
  • Thyroid Cancer
  • Ureter Cancer—with distant metastases or inoperable, unresectable or recurrent

The CAL initiative is supposed to identify conditions that qualify a person for Medicare. If the condition doesn’t meet very specific criteria, it will not be considered as a CAL case. Identified conditions are entered into a Predictive Model and a determination of Medicare eligibility is made based on this. The information entered into this model comes from one of two Social Security forms filled out by the person making the claim. For an adult this form is SSA-3820 and for a child it is SSA-3820.

The CAL cases are similar to terminal illness claims, even though not all compassionate allowance cases involved terminal illnesses.

If you’re under 65 and enrolled in Original Medicare, Part A and Part B, and want to explore your other Medicare plan options, I can help answer your questions. Check out my profile by clicking on the orange button below. If you like, request a phone appointment or get an email from me; I’ll send you Medicare information tailored to your needs. To see plans now, try the blue Find Your Plan button in the top right section of this page. Or to get assistance quickly, feel free to call us at 1-844-847-2659 (or at 711 if you need TTY assistance).

Medicare has neither reviewed nor endorsed this information.

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