小児慢性特定疾患って何ですか？A: 小児慢性特定疾患治療研究事業につい

小児慢性特定疾患って何ですか？


A: 小児慢性特定疾患治療研究事業についてお話します。
本事業は、慢性疾患に罹患しているお子さんの医療費の自己負担分を補助し(国と地方自治体が５０％ずつ)、治療研究にも役立てる制度として1974年に創設されました。当初は法的根拠のない事業でしたが、児童福祉法の改正案が2004年11月に国会で成立し、2005年4月以降、法律に基づく安定的な制度となりました。
要点は以下のようになります。
慢性消化器疾患群を追加して対象疾患を11疾患群とし、厚生労働大臣が定める514の疾患が対象になりました。従来は入院のみが対象だった疾患もありましたが、全ての疾患で入・通院とも対象になりました。対象年齢を延長し、新規認定は18歳未満、継続申請は20歳未満までになりました。他の医療費公費負担制度との均衡を考慮して、家庭の所得に応じた自己負担が導入されました。一定の基準を満たす（重症認定）、重症な患者さんは自己負担金がなくなります。日常生活用具の給付など、福祉サービスの充実が図られました。従来は、医療施設は一施設に限られていましたが、複数の施設にまたがって適用されるようになりました。また、研究面では従来以上に専門的に解析できる内容になりました。
「実施主体」は、都道府県、指定都市及び中核市です。514疾患すべてを対象とするかは各自治体の裁量に任せられており、財政事情によりその自治体で認める疾患数は変化します。

１）対象疾患群：
・ 悪性新生物
・ 慢性腎疾患
・ 慢性呼吸器疾患
・ 慢性心疾患
・ 内分泌疾患
・ 膠原病
・ 糖尿病
・ 先天性代謝異常
・ 血友病等血液・免疫疾患
・ 神経・筋疾患
・ 慢性消化器疾患
の１１疾病区分に分けられています。

２）対象疾患及び対象基準
神経・筋疾患の疾病区分では、福山型先天性筋ジストロフィーなどの先天性遺伝性筋ジストロフィー、ネマリンミオパチー、筋細管性ミオパチー、先天性筋タイプ不均等症、セントラルコア病、ミニコア病などの先天性ミオパチー、結節性硬化症、ミトコンドリア脳筋症、Kearns-Sayre症候群、リー脳症（Leigh脳症）、レット症候群、無痛無汗症、亜急性硬化性全脳炎（SSPE）、点頭てんかん（West症候群）、レノックス・ガストー症候群、乳児重症ミオクロニーてんかんが認定されています。
それ以外に、先天性代謝異常の疾病区分に多くの神経疾患が含まれています。神経・筋疾患のあるものは遺伝子異常に基づくため、先天性代謝異常の疾病区分に分類されています。この中には、高アンモニア血症や有機酸代謝異常症、アミノ酸代謝異常症、白質ジストロフィー（MLD, ALD、アレキサンダー病、カナバン病、クラッベ病）、筋型糖原病、ペルオキシゾーム病、色素性乾皮症、ムコ多糖症、ムコリピドーシス（GM1, GM2ガングリオシドーシス、ニーマン・ピック病、フコシドーシスほか）、レッシュ・ナイハン症候群、ニューロナルセロイドリポフスチン症、メンケス病、ロウ症状群、ルイ・バー症候群、Pelizaeus-Merzbacher病、エーラース・ダンロス症候群、ウィルソン病、軟骨無形成症、軟骨異栄養症などが含まれています。この他に、内分泌疾患の区分中には、プラダー・ウィリ症候群、XXX症候群、クラインフェルター症候群、周期性ACTH症候群、全身性リポジストロフィー、早老症、慢性呼吸器疾患の区分中には気管狭窄、悪性新生物の疾病区分では各種の脳腫瘍などが対象となっています。
お子さんの疾患が対象疾患になっているか、主治医に問い合わせてみてください。これらの疾患の中には病名がつけば認められるものと、一定の条件がないと認められないものがありますので、主治医にご確認ください。また、詳細は厚生労働省のホームページにアクセスして情報を得ることをお勧めします。

３）一部負担額
小児慢性特定疾患児のご家庭の課税状況に応じて、一定の自己負担が決められており、上限（月額）は入院１１５００円、外来５７５０円です。ただし、扶養義務者の市町村税が非課税の場合や重症患児に認定された場合は自己負担が免除されています。

４）重症患児認定基準
発達・知能指数が20以下、又は１歳以上の児童において寝たきりの方、視力や聴覚に著しい障害を有する方、手・足・体幹機能の著しい障害がある方、等の重症患者認定基準を満たした場合は、自己負担金の支払い義務がありません。

５）福祉サービス
＊小児慢性疾患児養育経験者等による相談事業（都道府県事業）
主として保健所で行われているピアサポート事業です。以前より難病のこども支援全国ネットワークは、病気や障害のある子ども達と家庭へのサポートを目的として、ネットワーク電話相談室を開設し、医療や福祉に関する相談を受付け、また親の会や同病の患者を紹介するなど広範囲な活動を続けていました。
ピアサポート事業では、この相談事業を拡張し、実際にピアサポーターが出向き、よろず相談や各種手続きの付添い、ボランティアのコーディネートなど、より身近なサポートを継続して行っています。しかし地域によって稼動していないところもあり、今後の課題といえます。

＊患者に対する日常生活用具の給付（市町村事業）
日常生活を営むのに著しく支障のある在宅の小児慢性特定疾患児に対しては、2005年度より日常生活用具を給付することにより日常生活の便宜が図られています。給付の対象となる用具は、便器・特殊マット・特殊寝台・歩行支援用具・入浴補助用具・特殊尿器・体位変換機・車椅子・頭部保護帽・電気式たん吸引器・クールベスト・紫外線カットクリームです。自己負担はやはり扶養義務者の課税状況により区分されています。

結果 (英語) 1:

What is chronic diseases?A: talk about pediatric chronic specified disease treatment research operations increasingly. This business was founded in 1974 as the system also useful for treatment research (national and local governments 50% each), and assists children suffering from chronic diseases medical expenses borne. Now a stable system was initially not legal grounds for business established in Parliament 11/2004 amendment to the Child Welfare Act, 4/2005, based on the law. Bottom line looks like the following. Diseases specified by the Minister of health, diseases and 11 diseases group to add a chronic digestive disease group 514 became a target. Disease hospitalization only for conventional was there, became target immigration, hospital visits, and in all diseases. Extending the age, now new accreditation is less than 18 years of age the continuation application is under 20 years old. Pay parity with other medical expenses medical security system, based on your household income has been introduced. Severe patients who meet certain criteria (severe certified), eliminates copayments. Welfare services, such as daily life equipment was improved. Now apply the legacy were limited to one facility medical facilities across multiple facilities. Also, in terms of research analysis technically more conventional content. Implementing entity is prefectures and designated cities and core city. Or 514 disease everything to left to the discretion of each municipality, changes number of diseases due to financial circumstances admit in their municipalities.1 ） target group:Malignant neoplasm-Chronic kidney diseaseChronic respiratory diseasesChronic heart disease-Endocrine disordersAnd connective tissue diseases-Diabetes mellitusA case of congenital metabolic disorders-Hemophilia, blood and immune disorders-Neuro-muscular diseasesChronic digestive diseases The is divided into 11 diseases Division.2 ） diseases and subject criteria Diseases Division of neuro-muscular disease is congenital hereditary muscular dystrophy, Fukuyama type congenital muscular dystrophy, nemarinmiopatea, muscle of myopathy, congenital myopathy, congenital muscle type non-uniform of, hyperthermia, mini core disease, tuberous sclerosis, mitochondrial myopathy, Kearns-Sayre syndrome, Lea encephalopathy (Leigh encephalopathy), Rett syndrome, painless anhidrosis, sub acute Sclerosing Panencephalitis （ SSPE ）, infantile epilepsy West syndrome and Lennox-Gastaut syndrome, Severe Myoclonic epilepsy in infancy has been certified. Otherwise the disease classification of inborn error of metabolism in the many neurological diseases. For the neuro-muscular disease is based on the gene abnormality, disease classification of inborn error of metabolism are classified. This during in hyperammonemia and organic acid metabolism disorders, amino acid disorders, white quality dystrophy MLD, ALD, Alexander disease, Canavan disease, krabbe disease, muscle-glycogen storage disease, peroxisomes disease, xeroderma pigmentosa, Mucopolysaccharidosis, mucolipidosis （ GM1, GM2 gangliosidosis, Niemann-Pick disease, vkosydowsis etc ）, Lesch-Nyhan Syndrome, neuronarceloidripofuscin syndrome, Menkes disease, Lowe syndrome, Louis-bar syndrome, Pelizaeus-Merzbacher disease, Ehlers-Danlos syndrome, Wilson's disease, Achondroplasia the cartilage different nourishment syndrome etc are included. During the Division of endocrine disorders in Prader-Willi syndrome, XXX syndrome, Klinefelter's syndrome, periodic ACTH syndrome, generalized lipodystrophy, Progeria, chronic respiratory diseases classification in tracheal stenosis, malignant neoplasm disease classification is various types of brain tumors, such as target is. Try contacting your doctor, or your child's disease are diseases. Accepted images of these disease diagnosis and are not recognized and no constant conditions, so please check your doctor. Also recommended to get information and access to the home page of the Ministry of health for more information.3 ） some amount Depending on the tax status of the families of children chronic specific diseases with certain expense is determined and, is 11,500 yen hospitalization, outpatient 5750 Yen limit (per month). However, if the person under a duty of the municipal taxes or tax-exempt if certified in children with severe borne are exempt.4 ） severely affected children with certification standards If you meet the severe patient certification standards such as bedridden, people with significant disabilities to eyesight and hearing, who have significant disabilities of hands, legs, and trunk function in less than 20 or more than 1-year-old child developmental and intelligence quotient is responsible for copayments.5 ） welfare services＊ Pediatric chronic diseases children experience caregiver, etc. by consulting business (State projects) Is the health centers as the primary peer support projects. Continued extensive activities earlier than incurable children's support network, support for children with illnesses or disabilities and home purposes, network phone counseling opened and accepted medical and welfare consultation, also presented the Association of parents and fellow patients, etc. In peer support business consulting business expansion and actually offer trainings, yorozu closer support for consultations and procedures regarding attendance, volunteer coordination, continuously. But is not running by the community, said the challenges of the future.＊ everyday tools for patient benefit municipal project For Pediatric specific children at home daily activities significantly hinder a 2005 benefit daily life necessities is provided the convenience of everyday life. Equipment will be eligible for benefits a urinal, special mat and special bed and walking assistance tool, bath AIDS and special urine collector and positions conversion machine, wheelchair, head protection CAP and Tan electric is a suction unit cool vest ultraviolet lines cut cream. Co-pay is still separated by a person under a duty of taxation.

結果 (英語) 3:

What is the specific chronic diseases of children suffering from? Stress A -- talk about the treatment for specific child chronic diseases. At present, the project is a chronic disease with the aid of a child suffering from medical expenses borne by the state and local governments by some as a system to study and treatment was founded in 1974. At first it was a business without legal basis, the revision of the child welfare law enacted by Congress in November 2005, since April, based on the law and the system is stable. AtLooks like the following. To add a device object disease at chronic digestive diseases and disease group by group, the Minister of health, labour and welfare subject to 514. There was only the hospitalization was a disease, and it has become a subject of all disease and hospital. Extended object age under 18 years old, new, and was continued for up to 20 years old. And other medical expenses to balance the public expenditure system, taking into account was introduced according to the own expense of household income.To meet a certain standard (severe), severe patient copayment is eliminated. The equipments of the welfare service. In the prior art, has been limited to the facilities, medical facilities, can now be used across multiple facilities. In addition, the content can be more than the conventional technical analysis in the aspect of research. "The main body" is the core city of prefectures and ordinance-designated city.All 514 disease as an object, and left to the discretion of each municipality will change the number of disease in its financial situation by the government. Well, 1) group by the object disease of malignant neoplasm, chronic kidney disease, chronic respiratory disease at chronic heart disease, endocrine disease were divided into 11 division at the primary disease, and diabetes. At the congenital metabolic disorders, autoimmune diseases, such as hemophilia at at nerve and muscle disorders at the chronic digestive disease. 2) the classification of disease and disease for the reference of nerve and muscle diseasesCongenital muscular dystrophy congenital nemaline myopathy, such as Fukuyama type congenital muscular dystrophy, muscular tubular congenital myopathy, muscle fiber type disproportion, central core disease such as mini core disease, congenital myopathy, tuberous sclerosis, mitochondrial encephalomyopathy, Lee, Kearns Sayre syndrome and encephalopathy (Leigh encephalopathy. The Rett syndrome, anhidrosis, subacute sclerosing panencephalitis (SSPE), infantile spasms (West Lennox-Gastaut syndrome syndrome,,It is found that severe myoclonic epilepsy in infancy. In addition, it contains many neurological disorders in diseases of metabolic disorders. Some of the nerve and muscle disease based on the gene abnormality, congenital disease is classified into the categories of metabolic disorders. In this, the hyperammonemia and metabolic disorder of organic acid and amino acid metabolism abnormality, leukodystrophy (MLD, ALD Canavan disease, disease, Alexander, Krabbe disease), muscle type glycogenosis, peroxisomal disease