See original article at List of Social Security Compassionate Allowance Conditions - US
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List of Social Security Compassionate Allowance Conditions - US
By Social Security Online

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.

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.

UPDATE:

Social Security is adding 38 more conditions to its list of Compassionate Allowances. This is the first expansion since the original list of 50 conditions - 25 rare diseases and 25 cancers - was announced in October 2008. The new conditions range from adult brain disorders to rare diseases that primarily affect children. The complete list of the new Compassionate Allowance conditions is attached.

"The addition of these new conditions expands the scope of Compassionate Allowances to a broader subgroup of conditions like early-onset Alzheimer's disease,” Commissioner Astrue said. "The expansion we are announcing today means tens of thousands of Americans with devastating disabilities will now get approved for benefits in a matter of days rather than months and years.”

Compassionate Allowances are a way of quickly identifying diseases and other medical conditions that clearly qualify for Social Security and Supplemental Security Income disability benefits. It allows the agency to electronically target and make speedy decisions for the most obviously disabled individuals. In developing the expanded list of conditions, Social Security held public hearings and worked closely with the National Institutes of Health, the Alzheimer's Association, the National Organization for Rare Disorders, and other groups.

"The diagnosis of Alzheimer's indicates significant cognitive impairment that interferes with daily living activities, including the ability to work," said Harry Johns, President and CEO of the Alzheimer's Association. "Now, individuals who are dealing with the enormous challenges of Alzheimer's won't also have to endure the financial and emotional toll of a long disability decision process."

"This truly innovative program will provide invaluable assistance and support to patients and families coping with severely disabling rare diseases,” said Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD). "On behalf of those patients and families, I want to thank Commissioner Astrue and his enthusiastic team for creating and now expanding a program that will have a direct impact on the quality of life of thousands of individuals."

"The initiative not only assists those whose applications are quickly processed, but also assists those whose applications need more time and attention from SSA adjudicators,” said Marty Ford, Co-Chair, Social Security Task Force, Consortium for Citizens with Disabilities. "We are pleased to see today's expansion and look forward to working with Commissioner Astrue on further expansion of this decision-making tool and other ways to expedite determinations and decisions for disability claims.”

"We will continue to hold hearings and look for other diseases and conditions that can be added to our list of Compassionate Allowances," Commissioner Astrue said. "There can be no higher priority than getting disability benefits quickly to those Americans with these severe and life-threatening conditions.”

Social Security will begin electronically identifying these 38 new conditions March 1.

For more information about the agency's Compassionate Allowances initiative, go to www.socialsecurity.gov/compassionateallowances.

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

Additional Conditions Added 12 Feb 2010

1. Alstrom Syndrome

2. Amegakaryocytic Thrombocytopenia

3. Ataxia Spinocerebellar

4. Ataxia Telangiectasia

5. Batten Disease

6. Bilateral Retinoblastoma

7. Cri du Chat Syndrome

8. Degos Disease

9. Early-Onset Alzheimer's Disease

10. Edwards Syndrome

11. Fibrodysplasia Ossificans Progressiva

12. Fukuyama Congenital Muscular Dystrophy

13. Glutaric Acidemia Type II

14. Hemophagocytic Lymphohistiocytosis (HLH), Familial Type

15. Hurler Syndrome, Type IH

16. Hunter Syndrome, Type II

17. Idiopathic Pulmonary Fibrosis

18. Junctional Epidermolysis Bullosa, Lethal Type

19. Late Infantile Neuronal Ceroid Lipofuscinoses

20. Leigh's Disease

21. Maple Syrup Urine Disease

22. Merosin Deficient Congenital Muscular Dystrophy

23. Mixed Dementia

24. Mucosal Malignant Melanoma

25. Neonatal Adrenoleukodystrophy

26. Neuronal Ceroid Lipofuscinoses, Infantile Type

27. Niemann-Pick Type C

28. Patau Syndrome

29. Primary Progressive Aphasia

30. Progressive Multifocal Leukoencephalopathy

31. Sanfilippo Syndrome

32. Subacute Sclerosis Panencephalitis

33. Tay Sachs Disease

34. Thanatophoric Dysplasia, Type 1

35. Ullrich Congenital Muscular Dystrophy

36. Walker Warburg Syndrome

37. Wolman Disease

38. Zellweger Syndrome

 

New Compassionate Allowances Conditions Added 14 July 2011:

1. Aortic Atresia

2. Eisenmenger Syndrome

3. Endomyocardial Fibrosis

4. Heart Transplant Graft Failure

5. Heart Transplant Wait List - 1A/1B

6. Hypoplastic Left Heart Syndrome

7. Left Ventricular Assist Device (LVAD) Recipient

8. Mitral Valve Atresia

9. Primary Cardiac Amyloidosis

10. Pulmonary Atresia

11. Single Ventricle

12. Tricuspid Atresia

 

New Compassionate Allowances Conditions Added 14 July 2011:

1. Lowe Syndrome

2. Angelman Syndrome

3. Lewy Body Dementia

4. Multiple System Atrophy

5. Corticobasal Degeneration

6. Paraneoplastic Pemphigus

7. Malignant Multiple Sclerosis

8. Pulmonary Kaposi Sarcoma

9. Primary Effusion Lymphoma

10. Multicentric Castleman Disease

11. Progressive Supranuclear Palsy

12. The ALS/Parkinsonism Dementia Complex

13. Primary Central Nervous System Lymphoma

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