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🏥 | Patients with cervical spinal cord injury, recovery of paralysis is promoted by surgery within 24 hours


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Surgery within 24 hours accelerates recovery of paralysis in patients with cervical spinal cord injury

 
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It is also known that patients with ossification of the longitudinal ligament after a designated intractable disease suddenly develop paralysis due to minor trauma such as a fall.
 

If a patient with a fracture-free cervical cord injury undergoes surgery within 24 hours of the injury, the paralysis in the limbs will recover faster ... → Continue reading

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Posterior longitudinal ligament ossification

Law on medical care for patients with intractable diseases

Law on medical care for patients with intractable diseases(Law No. 26, May 5, 30)JapanIn2014 (Heisei26 years)May 5Was established inIntractable disease measuresIt is a law that governs the new legal system of.At the time of bill deliberationIncidental resolutionWas adopted[1].Intractable disease lawAlso known as (Nanbyoho).

2015 (27) It came into effect on January 1st.The system under this law is a subsidy system for medical expenses for intractable diseases.[2], Also, specific medical expenses subsidy system[3]Is called.

Overview

The purpose is stated as follows[4].

As a measure based on the Act on Promotion of Reforms to Establish a Sustainable Social Security System, it will be possible to allocate consumption tax revenue to medical expenses subsidies for patients with intractable diseases by statutory measures. In addition to establishing a fair and stable system, we will take measures such as formulating basic policies, promoting research and research, and implementing medical treatment and living environment improvement projects.

As an expansion of the target diseases for medical expenses subsidy, the target diseases will be increased from the conventional 56 diseases to 306 diseases.Along with this, the number of beneficiaries will increase from about 78 (23) to about 150 million (27) (estimated).The budget scale for medical expenses subsidy will increase from 23 billion yen in 1190 (actual) to 27 billion yen in 2221 (budget).[5]On the other hand, traditionalSpecific diseaseFor patients (continuing intractable disease treatment) who were (targeted for specific disease treatment research projects), the subsidy will be reduced in general, so we are trying to mitigate the impact by a three-year transitional measure.[6].

Monthly self-pay upper limit for new medical expenses subsidy (unit: yen)
Hierarchical classificationHierarchical criteria
The numbers in parentheses are for a two-person household.
Estimated annual income in case
Patient burden ratio: 2% self-pay upper limit (outpatient + inpatient)
Outpatient limit (outpatient + inpatient)
principleCertified person (transitional measure 3 years)
GeneralExpensive
long[1]
GeneralSpecific illness
Treatment research business
Critically ill
Ventilator, etc.
Wearer
Ventilator, etc.
Wearer
Welfare-000000
Low income IMunicipal tax
Tax exemption (household)
Annual income of the person
~ 80 yen
2,5002,5001,0002,5002,5001,000
Low income IIAnnual income of the person
Over 80 yen
5,0005,0005,000
General income IMunicipal tax
Taxation or more and less than 7.1 yen
(Approximately 160 million yen to 370 million yen)
10,0005,0005,0005,000
General income IIMunicipal tax
7.1 10,000 yen or more and less than 25.1 10,000 yen
(Approximately 370 million yen to 810 million yen)
20,00010,00010,000
Top incomeMunicipal tax
25.1 yen or more
(From about 810 million yen)
30,00020,00020,000
Food expenses at the time of admissionFull copayment1/2 self-pay
  1. ^ "High-priced and long-term" means those who have monthly medical expenses exceeding 5 yen more than 6 times a year.
    (For example, in the case of 2% of medical insurance, the monthly out-of-pocket medical expenses exceed 1 yen more than 6 times a year).

As for which of the upper limit of self-pay and the patient's burden ratio of 2% is prioritized, the smaller one is the burden at the counter.[7]..Subsidies for medical expenses under the Intractable Diseases Law are called specific medical expenses.Prioritize benefits from the medical insurance system and long-term care insurance system when paying specific medical expenses (insurance priority system)[7].

The designated doctor system has started.Only a designated intractable disease doctor can create a new medical certificate for the intractable disease method.It is the intractable disease designated doctor and the cooperative intractable disease designated doctor who can prepare the medical certificate for renewal.Both require training and are renewed every 5 years.[8]The system of designated medical institutions has started.Based on applications from hospitals, clinics, pharmacies, etc., the prefectural governor has become a method of designating medical institutions that can receive medical care under the Intractable Diseases Law.[9]

By submitting the medical certificate for the Intractable Diseases Law together with the application form to the prefectural office, a medical beneficiary certificate will be issued and you will be able to receive it.[2]..However, it should be noted thatAs a general rule, it does not apply to mildly ill peopleIs[10], The definition of mild illness depends on each disease[11]..On the other hand, the treatment of mildly ill persons who need to continue expensive medical care is stipulated.[12].

Due to the revision of the medical expenses subsidy system, about 15 mildly ill patients were excluded from the benefits.[13]According to a survey by the Ministry of Health, Labor and Welfare research group, the average number of hospital visits for six months for excluded patients has decreased from 5.3 to 3.6.[14].

Regarding disability welfare services, not this lawDisability Comprehensive Support ActIs applied.Target intractable diseases have been expanded to 151 diseases[15].

For children, not this lawChild Welfare ActIs applied[16]..The system is a pediatric chronic specific illness medical expenses subsidy system[17][3]Is called.The maximum amount of self-pay is half that of adults, and in principle, half of the food expenses at the time of admission are subsidized.In addition, since he died in childhood, there are many diseases for which no adult cases have existed so far, and 704 diseases are targeted.For this reason, when a person who received a subsidy under the pediatric chronic specific illness medical expenses subsidy system turns 18 years old, there is a problem that the subsidy cannot be received under the intractable disease medical expenses subsidy system. being called[18].

Also, if the criteria for each disease are met and the examination is passed,Disability pensionWill be received.

Designated intractable disease

Intractable diseases that have been designated as subject to the Intractable Diseases Law are called designated intractable diseases, and are conventional.Specific diseaseDistinguished from 56 diseases.

第1次実施分は平成27年1月1日より、第2次実施分は平成27年7月1日より、第3次実施分は平成29年4月1日より、第4次実施分は平成30年4月1日より各々実施された。 これにより、従来の特定疾患を含めて331疾患となった。

1st implementation

Diagnostic criteria for each disease and individual application slips are posted on the Ministry of Health, Labor and Welfare website.[19].

Designated intractable disease for the first implementation[20]
numberDisease nameRemarks
1Spinal and bulbar muscular atrophySpecific disease
2Amyotrophic lateral sclerosisSpecific disease
3Spinal muscular atrophySpecific disease
4
5Progressive supranuclear palsySpecific disease
6Parkinson's diseaseSpecific disease
7Corticobasal degenerationSpecific disease
8Huntington's diseaseSpecific disease
9
10Charcot-Marie-Tooth disease
11Myasthenia gravisSpecific disease
12
13Multiple sclerosis/Neuromyelitis opticaSpecific disease
14Chronic inflammatory demyelinating polyneuritis/Multifocal motor neuropathySpecific disease
15Inclusion body myositis
16Crow / Fukase Syndrome
17Multiple system atrophySpecific disease
18Spinocerebellar degeneration(Excluding multiple system atrophy)Specific disease
19Lysosomal storage diseaseSpecific disease
20AdrenoleukodystrophySpecific disease
21Mitochondrial diseaseSpecific disease
22Moyamoya diseaseSpecific disease
23Prion diseaseSpecific disease
24Subacute sclerosing panencephalitisSpecific disease
25Progressive multifocal leukoencephalopathy
26HTLV-1-related myelopathy
27Idiopathic basal ganglia calcification
28SystemicAmyloidosisSpecific disease
29
30Distal muscular myopathy
31BethlemMyopathy
32Self-phagocytic vacuolarMyopathy
33Schwartz-Jampel Syndrome
34NeurofibromatosisSpecific disease
35PemphigusSpecific disease
36Specific disease
37Pustular psoriasis(General type)Specific disease
38Stevens-Johnson SyndromeSpecific disease
39Toxic epidermal necrolysisSpecific disease
40Takayasu arteritisSpecific disease
41Giant cell arteritis
42Polyarteritis nodosaSpecific disease
43Microscopic polyangiitisSpecific disease
44Granulomatosis with polyangiitisSpecific disease
45Eosinophilic polyangiitis granulomatosis
46Malignant rheumatoid arthritisSpecific disease
47Buerger's diseaseSpecific disease
48PrimaryAntiphospholipid antibody syndrome
49Systemic lupus erythematosusSpecific disease
50Dermatomyositis/PolymyositisSpecific disease
51Systemic sclerodermaSpecific disease
52Mixed connective tissue diseaseSpecific disease
53Sjogren's syndrome
54Adult still disease
55Relapsing polychondritis
56Behcet's diseaseSpecific disease
57Idiopathic dilated cardiomyopathySpecific disease
58Hypertrophic cardiomyopathySpecific disease
59Restrictive cardiomyopathySpecific disease
60Aplastic anemiaSpecific disease
61AutoimmuneHemolytic anemia
62Paroxysmal nocturnal hemoglobinuria
63Idiopathic thrombocytopenic purpuraSpecific disease
64Thrombotic thrombocytopenic purpura
65Primary immunodeficiency syndromeSpecific disease
66IgA nephropathy
67Polycystic kidney disease
68Ossification of the ligamentum flavumSpecific disease
69Ossification of the posterior longitudinal ligamentSpecific disease
70Specific disease
71Idiopathic femoral head necrosisSpecific disease
72Specific disease
73Specific disease
74Specific disease
75Cushing's diseaseSpecific disease
76Specific disease
77Specific disease
78Specific disease
79Familial hypercholesterolemia (Homozygous)Specific disease
80
81
82
83Addison's disease
84sarcoidosisSpecific disease
85Idiopathic interstitial pneumoniaSpecific disease
86Specific disease
87/Specific disease
88Specific disease
89LymphangioleiomyomatosisSpecific disease
90Retinitis pigmentosaSpecific disease
91Budd-Chiari SyndromeSpecific disease
92
93Primary biliary cholangitisSpecific disease
94Primary sclerosing cholangitis
95Autoimmune hepatitis
96Crohn's diseaseSpecific disease
97Ulcerative colitisSpecific disease
98
99
100
101
102
103CFC syndrome
104
105
106
107
108
109
110

2st implementation

Diagnostic criteria for each disease and individual application slips are posted on the Ministry of Health, Labor and Welfare website.[21].

Designated intractable disease for the first implementation[22][23]
numberDisease name
111Congenital myopathy
112
113Muscular dystrophy
114Non-muscularMyotonia Syndrome
115HereditaryPeriodic quadriplegia
116Atopic myelitis
117Syringomyelia
118Spinal meningocele
119Isaacs Syndrome
120HereditaryDystonia
121
122
123
124
125
126
127Frontotemporal lobar degeneration
128
129
130Congenital painless anhidrosis
131Alexander disease
132
133Moebius syndrome
134/
135
136
137
138
139
140Dravet syndrome
141
142
143
144Lennox-Gastaut Syndrome
145West syndrome
146Ohtahara syndrome
147
148
149
150
151
152
153
154
155
156Rett syndrome
157
158Tuberous sclerosis
159Xeroderma pigmentosum
160Congenital ichthyosis
161
162Pemphigoid(Including acquired epidermolysis bullosa)
163
164Oculocutaneous leukoderma
165
166Pseudoxanthoma elastico fibrous
167Marfan syndrome
168Ehlers-Danlos Syndrome
169
170
171Wilson's disease
172
173
174
175
176
177
178
179Williams syndrome
180
181Crouzon syndrome
182Apert syndrome
183
184
185
186
187Kabuki syndrome
188
189
190
191Werner syndrome
192Cockayne syndrome
193Prader-Willi Syndrome
194Sotos syndrome
195Noonan syndrome
196
197
198
199
200
201Angelman Syndrome
202
20322q11.2 deletion syndrome
204
205
206Fragile X syndrome
207
208Corrected transposition of the great arteries
209Complete macrovascular translocation
210Single ventricle
211Hypoplastic left heart syndrome
212Tricuspid atresia
213
214
215Tetralogy of Fallot
216Double outlet right ventricle
217
218Alport syndrome
219
220Rapidly progressive glomerulonephritis
221
222
223
224
225
226Interstitial cystitis(Hannah type)
227
228Bronchioleum obliterans
229Alveolar proteinosis(Autoimmune or congenital)
230
231
232
233
234(Adrenoleukodystrophyexcept for)
235Hypoparathyroidism
236Pseudohypoparathyroidism
237
238Vitamin DResistancerickets/Osteomalacia
239Vitamin D依存性rickets/Osteomalacia
240Phenylketonuria
241
242
243
244Maple syrup urine disease
245
246Methylmalonic acidemia
247Isovaleric acidemia
248
249
250Glutaric acidemia type 2
251Urea cycle disorder
252
253
254Porphyria
255
256Muscle typeGlycogen storage disease
257Liver typeGlycogen storage disease
258
259
260
261
262
263
264
265
266Familial Mediterranean fever
267High IgD syndrome
268
269-Pyoderma gangpyoderma-
270
271Ankylosing spondylitis
272Progressive ossifying fibrodysplasia
273
274Osteogenesis imperfecta
275
276Achondroplasia
277Lymphangiomatosis/Gorham's disease
278(Cervical facial lesion)
279(Diffuse cervical oropharyngeal lesion)
280(Cervical facial or limb lesions)
281
282
283Acquired pure red cell aplasia
284
285Fanconi anemia
286
287
288(Renamed from the time of the 3rd implementation)
289Cronkhite-Canada Syndrome
290
291Hirschsprung's disease(Whole colon type or small intestine type)
292
293
294Congenital diaphragmatic hernia
295
296Biliary atresia
297
298HereditaryPancreatitis
299Cystic fibrosis
300IgG4-related disease
301
302Leber's hereditary optic neuropathy
303Usher syndrome
304
305
306

3st implementation

Diagnostic criteria for each disease and individual application slips are posted on the Ministry of Health, Labor and Welfare website.[24].

Designated intractable disease for the first implementation[25][26]
numberDisease name
307
308
309
310
311CongenitalTricuspid valve stenosis
312CongenitalMitral stenosis
313
314
315Isaacs Syndrome
316() /
317
318
319
320
321
322
323
324
325
326
327(Limited to hereditary thrombophilia.)
328
329
330/

4st implementation

Diagnostic criteria for each disease and individual application slips are posted on the Ministry of Health, Labor and Welfare website.[27].

Designated intractable disease for the first implementation[28][29]
numberDisease name
331Sudden multicentricityCastleman disease

5st implementation

Diagnostic criteria for each disease and individual application slips are posted on the Ministry of Health, Labor and Welfare website.[30].

Designated intractable disease for the first implementation[31][32]
numberDisease name
332
333Hutchinson-Gilford Syndrome

Selection method and issues

The following four items are listed as definitions of intractable diseases.[33]

  1. Unknown cause (the mechanism of onset is not clear)
  2. No cure has been established
  3. Rare disease
  4. Those that require long-term medical treatment due to the illness

Of these, two more items will be selected and designated intractable diseases.

  1. The number of patients does not reach a certain number (0.1% of the population) in Japan
  2. Established objective diagnostic criteria (or equivalent)

Regarding the condition of the number of patients,Ulcerative colitisIn order to keep such things within the specified range, it was later shown that diseases less than 0.15% are also targeted for convenience.[34][35].

The selection is made by the Health Science Council (Intractable Diseases Review Committee designated by the Disease Control Subcommittee) in the form of a third-party organization.[36]

However, some issues have been pointed out regarding such selection methods.[37][38]..One point is that it may be inappropriate to divide the subsidy criteria according to the condition of shortage and the name of the disease.[39].

It has been announced that the Designated Intractable Diseases Review Committee will be held again during FY2015.[40].

As a prominent criticismJapan Federation of Bar Associations"Opinion Requesting the Establishment of Human Rights Guarantee for Intractable Diseases"[41], As of July 2015, 7,Prime Minister,Minister of Education, Culture, Sports, Science and Technologyas well as the Minister of Health, Labour and WelfareSubmitted to[42]..Among them, about the concept of "intractable disease"Disability Rights ConventionReceived, revisedBasic Law for Persons with DisabilitiesIt was strongly requested to adopt the way of thinking in line with.

Intractable and rare diseases

Except for the conditions of designated intractable diseases, the definition of intractable diseases in this law is long due to the above-mentioned four conditions, unknown cause (the mechanism of onset is not clear), rare diseases for which no treatment method has been established, and the diseases. It is a disease that meets the requirements for medical treatment.[33]..Rare diseases here mean diseases with a small number of patients, and when specific conditions are imposed, in Europe and the United States.Rare diseaseIt is a concept called.Rare diseases account for about 0.06% of the population (US)[43]), 0.05% (EU[44]) Is a disease.Rare diseases are mainly related to the recognition of so-called orphan drugs, which is a convenience for diseases in which the population ratio is small and drug development is not progressing, in the administration of Europe and the United States.As a concept close to rare diseases in Europe and the United States in JapanPharmaceuticals and medical devices lawDetermined byOrphan drugIt is convenient for diseases with a population ratio of less than about 0.04%.

In principle, less than 0.1% is used as a condition for designated intractable diseases in this law, so the conditions for rarity of designated intractable diseases are rare diseases in Europe and the United States, and in Japan.Pharmaceutical Affairs LawDetermined byOrphan drugHowever, the range of intractable diseases becomes narrower when conditions other than shortage are taken into consideration.Therefore, intractable diseases and rare diseases in this law are strictly different concepts as legal interpretations.However, as a practical matter, in a broad sense, what has traditionally been called an intractable disease in Japan is close to what has traditionally been called a rare disease in Europe and the United States.

footnote

[How to use footnotes]

Source

  1. ^ House of Representatives Welfare and Labor Committee, House of Councilors Welfare and Labor Committee (June 2014, 6). “Ancillary resolutions attached at the time of bill deliberation (PDF)”. Ministry of Health, Labor and Welfare. 2015/5/28Browse.
  2. ^ a b Ministry of Health, Labor and Welfare. “From July 27, 7, the number of diseases covered by the intractable disease medical expenses subsidy system for intractable diseases will be expanded. (PDF)". 2015/5/26Browse.
  3. ^ a b JPA (April 2015, 4). “I am concerned about the impact of the medical insurance system reform bill on the increase in the burden on patients. (PDF)". 2015/5/27Browse.
  4. ^ Outline of intractable disease medical expenses subsidy system, p. 4.
  5. ^ Outline of intractable disease medical expenses subsidy system, p. 5.
  6. ^ Outline of intractable disease medical expenses subsidy system, p. 6.
  7. ^ a b Outline of intractable disease medical expenses subsidy system, p. 10.
  8. ^ Outline of intractable disease medical expenses subsidy system, p. 42.
  9. ^ Outline of intractable disease medical expenses subsidy system, p. 43.
  10. ^ NHK (November 2014, 2). “Series Face to face with intractable diseases Part 1 How to support intractable disease medical care". 2015/5/26Browse.
  11. ^ Outline of intractable disease medical expenses subsidy system, pp. 31–32.
  12. ^ Outline of intractable disease medical expenses subsidy system, p. 7.
  13. ^ "Editorial: Subsidies for medical expenses for intractable diseases Considering the actual situation of mildly ill people". Mainichi NewspapersMainichi Shimbun (November 2018, 7). 2019/1/23Browse.
  14. ^ "Is it possible to reduce the number of hospital visits for patients with intractable disease "mild"?". Mainichi NewspapersMainichi Shimbun (November 2019, 1). 2019/1/23Browse.
  15. ^ Ministry of Health, Labor and Welfare. “Diseases covered by the Comprehensive Support for Persons with Disabilities Act (intractable diseases, etc.)". 2015/5/29Browse.
  16. ^ Ministry of Health, Labor and Welfare. “Outline of the bill to partially revise the Child Welfare Act (PDF)". 2015/5/26Browse.
  17. ^ Pediatric Chronic Specific Disease Information Center. “About medical expenses subsidy for specific pediatric chronic diseases". 2015/5/26Browse.
  18. ^ JPA (April 2014, 9). “New measures for intractable diseases, 2 intractable diseases and issues of the patient association (PDF)”. P. 36. 2015/5/28Browse.
  19. ^ Disease Control Division, Health Bureau, Ministry of Health, Labor and Welfare.Designated intractable disease (new) enforced on January 27, 1". 2015/9/3Browse.
  20. ^ Outline of intractable disease medical expenses subsidy system, pp. 13–14.
  21. ^ Disease Control Division, Health Bureau, Ministry of Health, Labor and Welfare.Designated intractable disease (new) enforced on July 27, 7". 2015/9/3Browse.
  22. ^ Health Bureau Disease Control Division. “Designated intractable disease (new) enforced on July 27, 7”. Ministry of Health, Labor and Welfare. 2015/5/24Browse.
  23. ^ Outline of intractable disease medical expenses subsidy system, pp. 16–19.
  24. ^ Disease Control Division, Health Bureau, Ministry of Health, Labor and Welfare.Designated intractable disease (new) enforced on July 29, 4". 2018/5/30Browse.
  25. ^ Health Bureau Disease Control Division. “Designated intractable disease (new) enforced on July 29, 4”. Ministry of Health, Labor and Welfare. 2018/5/30Browse.
  26. ^ Information on intractable disease medical expenses subsidy system Retrieved February 2018, 5
  27. ^ Disease Control Division, Health Bureau, Ministry of Health, Labor and Welfare.Designated intractable disease (new) enforced on July 30, 4". 2018/5/30Browse.
  28. ^ Health Bureau Disease Control Division. “Designated intractable disease (new) enforced on July 30, 4”. Ministry of Health, Labor and Welfare. 2018/5/30Browse.
  29. ^ Information on intractable disease medical expenses subsidy system Retrieved February 2018, 5
  30. ^ Disease Control Division, Health Bureau, Ministry of Health, Labor and Welfare.Designated intractable disease (new) enforced on July 7, 1st year of Reiwa". 2019/7/21Browse.
  31. ^ Health Bureau Disease Control Division. “Designated intractable disease (new) enforced on July 7, 1st year of Reiwa”. Ministry of Health, Labor and Welfare. 2019/7/21Browse.
  32. ^ Information on intractable disease medical expenses subsidy system Retrieved February 2019, 7
  33. ^ a b Outline of intractable disease medical expenses subsidy system, p. 20.
  34. ^ "How about organizing" about 0.1% or less of the population "indicated as" a certain number of people "as follows? " Ministry of Health, Labor and Welfare (January 2015, 7). “About requirements for designated intractable diseases (PDF)”. P. 5. 2015/5/29Browse.
  35. ^ Aya Ito (August 2014, 8). “113 intractable diseases proposed by the Ministry of Health, Labor and Welfare for medical expenses subsidy”. Asahi Shimbun Digital. 2015/5/29Browse.
  36. ^ Ministry of Health, Labor and Welfare. “Health Science Council (Disease Control Subcommittee Designated Intractable Diseases Review Committee)". 2015/5/24Browse.
  37. ^ My Fukushi.Editorial department (December 2013, 12). “Proposal for medical expenses for patients with intractable diseases-and to the Diet (Part XNUMX)". 2015/5/24Browse.
  38. ^ My Fukushi.Editorial department (December 2014, 2). “Proposal for medical expenses for patients with intractable diseases-and to the Diet (Part XNUMX)". 2015/5/24Browse.
  39. ^ NPO Fibromyalgia Tomo no Kai (March 2014, 3). “Do not separate us by disease name. -About the biggest concern about the "intractable disease bill"-". 2015/5/25Browse.
  40. ^ Ministry of Health, Labor and Welfare (January 2015, 4). “Future schedule (PDF)". 2015/5/25Browse.
  41. ^ "Statement of Opinion Calling for the Establishment of Human Rights Guarantee for Intractable Diseases”. Japan Federation of Bar Associations (July 2015, 7). 2019/1/23Browse.
  42. ^ Ministry of Health, Labor and Welfare (January 2015, 7). “Statement of Opinion Calling for the Establishment of Human Rights Guarantee for Intractable Diseases". 2015/8/3Browse.
  43. ^ en: Rare Diseases Act of 2002
  44. ^ "About Rare Diseases". en: EURORDIS. 2015/5/29Browse.

References

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