The success of professional and patient collaboration in influencing stroke policy in Japan

19 Dec 2019 Stroke awareness Stroke prevention

World Stroke Organization has both scientific stroke organization members as well as patient stroke support organizations. The distinction being the former are membership societies of stroke medical professionals while the latter are non-profits with a mission to raise awareness of stroke and support the long term care of people affected by stroke through advocacy and support services. Where these organizations collaborate to influence stroke policy, bringing together the professional and the lived experience, we can see important steps forward in improving stroke care.

In 2009, the Japanese stroke support organization, the Japan Stroke Association, proposed a draft of the Stroke Control Act. In a country where stroke is the third leading cause of death, and it accounts for one-sixth of the causes requiring long term support and care, a national stroke prevention, treatment and care strategy was recognised as vital.

In 2014, 14 stroke-related societies started joint lobby activities and submitted a petition signed by 182,205 people to the Diet, the national legislature of Japan. While the initial Act proposed was scrapped in 2014, due to the dissolution of the House of Representatives, the re-proposal was deterred by some Diet members, who were against making a new basic law for a single disease.

Undeterred, the Japan Stroke Association, the Japan Stroke Society, the Japanese Circulation Society, and the Japan Heart Foundation formed a lobby organization with concerned citizens, patient groups, family members, and academic and professional societies. They developed a new strategy resulting in the Stroke and Cardiovascular Disease Control Act, including measures against cardiovascular diseases, which share common risk factors with stroke. After repeated petitions to Diet members and numerous public rallies, all political parties reached a consensus. On December 10, 2018, the Act passed the Diet.

This law has become the first ever legislative measure against stroke and cardiovascular disease in Japan.

The Act came into force on December 1st 2019 and following this the Basic Plan to Promote Stroke and Cardiovascular Disease Control Programs will be developed with input from the Stroke and Cardiovascular Disease Control Promotion Council. This council includes patients and family members, professionals in emergency transport, public health, medicine and social welfare, and researchers. The plan will cover the following areas:

•   Public awareness of stroke prevention and emergency response
•   Improvement of local emergency transport and medical system
•   Improvement of local medical facilities
•   Improvement of quality of life of patients
•   Improvement of coordination of relevant professionals
•   Skills development of stroke professionals
•   Improvement of information collection system and consultation support system for the patients
•   Promotion of research

Following the development of the Basic Plan, each prefecture shall make a Prefectural Plan to Promote the Stroke and Cardiovascular Disease Control Program. The Japan Stroke Society and the Japan Stroke Association will also be actively involved in the development of the Basic Plan along with the Prefectural Plans.

The lobbying work of these stroke focused organisations in Japan, both professional and patient, demonstrates how perseverance, adaptation to legislative challenges, inclusion of a broad range of stakeholders and commitment to all stages of the lobbying journey are all key components of influencing stroke care policy. We commend the work of our members and their broader network in taking these steps towards improving stroke prevention, treatment and care across Japan.

Listen to a recent International Journal of Stroke Podcast Series about the Stroke and Cardiovascular Disease Control Act

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