難病対策 患者を支える体制が必要だ

The Yomiuri Shimbun (Jan. 29, 2013)
Patients with rare diseases need more support
難病対策　患者を支える体制が必要だ（1月28日付・読売社説）

It is important to craft a system to support people battling intractable diseases.
　難病と闘う患者を支える仕組みを整えることが重要である。

The Health, Labor and Welfare Ministry's Health Science Council has compiled a set of proposals concerning a medical treatment system for intractable diseases and measures to support patients suffering from such illnesses. The ministry aims to establish a law to get these proposals up and running.
　厚生労働省の厚生科学審議会は、難病の診療体制や患者への支援策の提言をまとめた。厚労省は具体化のための法整備を目指す。

Intractable diseases are conditions for which treatments have not yet been established due to the low number of cases and because their cause is unknown. They can impair a patient's daily life for years. There are said to be 5,000 to 7,000 intractable diseases.
　難病は、患者数が少なく、原因不明で治療法が確立していない病気を指す。長期にわたり生活への支障が生じる。全体で５０００～７０００種類に上るとされる。

Patients are eligible to receive subsidized medical care for 56 such diseases whose diagnosis criteria are well-defined and whose treatment is very expensive, such as amyotrophic lateral sclerosis (ALS) and Parkinson's disease.
　このうち、診断基準が明確で、医療費負担が重い筋萎縮性側索硬化症（ＡＬＳ）、パーキンソン病など５６疾患が医療費の助成対象になっている。

===

Subsidies due for review

The main pillar of the proposals is to review the medical expenses subsidies and increase the number of diseases covered by them to about 300.
　提言の柱は、医療費の助成を見直し、対象の病気を３００程度に拡大することだ。

The proposals take into account the fact that many patients with intractable diseases--aside from the 56 covered by subsidies--have to pay heavy medical expenses.
　５６疾患以外にも、重い医療費の負担を強いられる難病患者が少なくないことを考慮した。

We think it is reasonable to eliminate unfairness in public support between patients eligible for subsidies and those who are not.
助成を受けていない病気の患者との不公平の解消を図ることは、妥当と言えるだろう。

The proposals also call for severely ill patients, whose medical expenses are currently covered entirely by public funds, to bear some of the cost, depending on their income. Lying behind this move is the fact that the number of patients eligible for public support has increased, pushing the state's fiscal burden above 120 billion yen a year.
　さらに提言は、医療費が無料となっている重症患者からも、所得に応じて自己負担を求めた。助成対象者が増え、財政負担が年１２００億円を超えた事情がある。

While coming up with fresh ideas for securing the necessary funds is vital, it will be inevitable to lower the subsidies so more patients can receive support.
　財源確保に知恵を絞る必要があるが、より多くの患者を援助するには、医療費助成の給付水準を引き下げることはやむを得まい。

The proposals also call for university hospitals and other medical facilities with specialists in diverse fields to be designated as key hospitals for treating patients with intractable diseases. This is because such patients often require the help of several clinical departments, such as the neurology and cardiovascular departments.
　提言では、多様な分野の専門医がいる大学病院などを、難病医療の拠点病院として新たに指定することも求めている。難病治療には神経内科、循環器科など多くの診療科の連携が必要なためだ。

===

Boost research

The important thing is to build a system that enables patients with intractable diseases to have their cases accurately diagnosed by specialists. It is crucial that specialists be properly placed at these key hospitals.
　重要なのは、難病患者が確実に専門医の診断を受けられる体制を構築することである。拠点病院に専門医を適切に配置することが欠かせない。

As only a few patients have intractable diseases, the number of specialists with ample experience in treating them is limited.
　難病は患者数が少ないために、診療経験の豊富な専門医も限られる。

Many of these patients have had to visit various medical institutions over many years before having their condition diagnosed correctly by specialists.
正しい診断を受けるまで、何年も様々な医療機関を訪ね歩く患者は少なくない。

It might be a good idea to create a database on medical institutions equipped with such specialists that patients can check on the Internet.
　専門医がいる医療機関の情報をデータベース化し、患者が検索できるようにしてはどうか。

If the first medical practitioner to treat a patient with an intractable disease is not an expert on the condition, he or she is required to properly introduce the patient to a specialist. For this, regular doctors will need to deepen their knowledge and understanding of intractable diseases.
　最初に診療する医師は、自身が専門医でなくても、的確に専門医を紹介することが求められる。一般の医師が難病への知識と理解を深めることが大切だ。

The proposals also call for boosting research on intractable diseases. They urge more research on gene analysis to clarify how diseases spread and work, and new treatments utilizing regenerative medicine technology.
　提言は、難病研究の強化も打ち出した。病気のメカニズムを解明するための遺伝子解析や、再生医療技術を活用した新しい治療法の研究を推進する。

We hope the public and private sectors both make efforts to trace the causes of diseases and develop new medicines--two steps eagerly awaited by many patients.
　多くの患者が待ち望んでいる病気の原因究明や新薬開発に、官民で力を入れてもらいたい。

(From The Yomiuri Shimbun, Jan. 28, 2013)
（2013年1月28日01時07分  読売新聞）