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List of Social Security Compassionate Allowance Conditions - US

Compassionate allowances are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate allowances will allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.

U.S. Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.

The Compassionate Allowance initiative will fast-track applications for social Security disability for applicants with any of 25 rare diseases and 25 cancers whose medical conditions are very severe. Currently, many people with rare diseases experience devastating delays when they apply for social Security  assistance because those making the decisions are not familiar with their diseases.

Compassionate allowances are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate allowances will allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.

Many people with rare diseases encounter delays of months or even years when they apply for assistance through SSA. Often, people with rare diseases initially are denied assistance but later reapply, often with the help of an attorney, and ultimately are approved. The delay and expense of attorney fees can be overwhelming to people who are already coping with serious illness, major medical expenses, and loss of ability to perform normal activities, including work.

Commissioner Astrue has held two Compassionate Allowance  public outreach hearings. The first was on rare diseases and the second was on  cancers. A third hearing on brain  injuries was held on November 18, 2008.

The initial list of Compassionate Allowance conditions was developed as a result of  information received at public outreach hearings, public comment on an Advance Notice of Proposed Rulemaking,  comments received from the Social Security  and Disability Determination Service communities, and the counsel of medical and  scientific experts. Also, we considered which conditions are most likely to  meet our current definition of disability.

A modest 50 conditions have been selected for the initiative's rollout. This program is just a start. There are 6,000 to 7,000 known rare diseases, many of which could qualify for compassionate allowance. NORD is committed to working with SSA to bring many more rare diseases under this program. The list which follows may expand over time.

List of Compassionate Allowance Conditions

1 Acute Leukemia

2 Adrenal Cancer - with distant metastases or inoperable, unresectable or recurrent

3 Alexander Disease (ALX) - Neonatal and Infantile

4 Amyotrophic Lateral Sclerosis (ALS)

5 Anaplastic Adrenal Cancer - with distant metastases or inoperable, unresectable or recurrent

6 Astrocytoma - Grade III and IV

7 Bladder Cancer - with distant metastases or inoperable or unresectable

8 Bone Cancer - with distant metastases or inoperable or unresectable

9 Breast Cancer - with distant metastases or inoperable or unresectable

10 Canavan Disease (CD)

11 Cerebro Oculo Facio Skeletal (COFS) Syndrome

12 Chronic Myelogenous Leukemia (CML) - Blast Phase

13 Creutzfeldt-Jakob Disease (CJD) - Adult

14 Ependymoblastoma (Child Brain Tumor)

15 Esophageal Cancer

16 Farber's Disease (FD) - Infantile

17 Friedreichs Ataxia (FRDA)

18 Frontotemporal Dementia (FTD), Picks Disease -Type A - Adult

19 Gallbladder Cancer

20 Gaucher Disease (GD) - Type 2

21 Glioblastoma Multiforme (Brain Tumor)

22 Head and Neck Cancers - with distant metastasis or inoperable or uresectable

23 Infantile Neuroaxonal Dystrophy (INAD)

24 Inflammatory Breast Cancer (IBC)

25 Kidney Cancer - inoperable or unresectable

26 Krabbe Disease (KD) - Infantile

27 Large Intestine Cancer - with distant metastasis or inoperable, unresectable or recurrent

28 Lesch-Nyhan Syndrome (LNS)

29 Liver Cancer

30 Mantle Cell Lymphoma (MCL)

31 Metachromatic Leukodystrophy (MLD) - Late Infantile

32 Niemann-Pick Disease (NPD) - Type A

33 Non-Small Cell Lung Cancer - with metastases to or beyond the hilar nodes or inoperable, unresectable or recurrent

34 Ornithine Transcarbamylase (OTC) Deficiency

35 Osteogenesis Imperfecta (OI) - Type II

36 Ovarian Cancer - with distant metastases or inoperable or unresectable

37 Pancreatic Cancer

38 Peritoneal Mesothelioma

39 Pleural Mesothelioma

40 Pompe Disease - Infantile

41 Rett Syndrome

42 Salivary Tumors

43 Sandhoff Disease

44 Small Cell Cancer (of the Large Intestine, Ovary, Prostate, or Uterus)

45 Small Cell Lung Cancer

46 Small Intestine Cancer - with distant metastases or inoperable, unresectable or recurrent

47 Spinal Muscular Atrophy (SMA) - Types 0 And 1

48 Stomach Cancer - with distant metastases or inoperable, unresectable or recurrent

49 Thyroid Cancer

50 Ureter Cancer - with distant metastases or inoperable, unresectable or recurrent

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