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A historical review of the connection between investigative medical research and intractable disease policy

HASEGAWA Yui (Kyoto Prefectural University ^ Japan Society for the Promotion of Science Postdoctoral Fellow)@2015/11/30
East Asia Disability Studies Forum 2015 in Beijing

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last update: 20151127

¡Background & Issue Awareness

EThe antithesis to a society which oppresses the disabled.
EThe concept of disability is broken down into gimpairmenth and gdisabilityh.
EOne important issue is how to surmount social problems related to physical disability.
Here we take a historical look at how those with intractable diseases have tried to overcome social issues.

¡Problems surrounding the positioning of the SMON issue

ENational SMON Association? Issues with overall treatment
The National SMON Association considers SMON an intractable disease, and, by remaining aware of the limitations of treatment available, aims to expand services as an issue of social welfare.
EMinistry of Health, Labour and Welfare (MHLW) has shown a tendency to provide relief to patients as if SMON were a pollution issue.

¡Intractable disease policy and patient-centered social movements

The SMON issue drew peoplefs attention to the intractable diseases that had been neglected by the government.

ƒThe history of intractable disease policies driven by SMON patient social movements„
1968@SMON outbreak
1969@MHLW launches the SMON investigative research committee. The National SMON Association is formed.
1970@The Clioquinol theory is publicized, sales are halted and its use suspended.
1971@SMON patients bring a lawsuit against the government and pharmaceutical manufacturers.
1972@An outline for intractable disease policy is enacted.
1979@A settlement is reached regarding the cause of SMON and regarding the provision of permanent care for patients.

EFollowing in the steps of the National SMON Association, organizations advocating for sufferers of various other individual intractable diseases are formed.
EThe SMON patient social movement served as a role model for movements by people with other intractable diseases.

¡The assertions of the SMON patient movement

Social welfare as continuous treatment
EKeeping in mind the experience-based mistrust of medical treatment, the patientsf perspective saw treatment itself as the issue in question and their movement aimed to bring into practice the treatments they hoped for.
EHandling the disease as having been caused by pollution or pharmaceutical drugs thus shifted the conception of SMON away from being thought of as an intractable disease.

¡gIntractable diseaseh within the SMON patient movement

EThe term gintractable diseaseh can be seen as the means by which patients pursued the realization of the kind of care they wanted through the coupling of medical treatment and social welfare as a collective.
EAs a result, they were able to have SMON designated as a target disease in the intractable disease policy outline.

¡SMON as a form of impairment

There is a large difference between looking to society for the cause of an impairment and looking for the cause of a disability.
EFor SMON patients, the mindset that asserted the scientific medical validity of existing medical care itself was a disability.
EThe SMON social movement was not looking to society to find the cause of impairment through pollution, pharmaceutical drugs, or other causes of harm, but instead was looking for changes to be made in existing medical practices ? it was pursuing redress through the combination of social welfare and medical treatment.
EMoreover, once the cause of SMON had been made clear, the difficulties of those involved in movements advocating for SMON patients and sufferers of other intractable diseases were able to be faced.

Ironically, those patient movements driven by the desire to cure a disease have served to bolster the framework of the intractable disease policies.
EWhen it comes to the individual, however much his or her disability has been alleviated the question of exactly how to approach the concept of impairment still remains.
EIt is natural to want to avoid the cruelty of the term gimpairmenth given the anxiety and anguish patients feel regarding the incurability of their disease and the physical pain that afflicts them, and it is natural to hope for a cure.
EHowever, when the desire to cure a disease arises while the correct approach remains unknown, it is conceivable that when interests come together with that desire and interact, society may end up building a framework like the Medical Model.


–ì¬FHASEGAWA Yui
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