Report on Meeting with CJD Support Network - Japan

Held at The Manor Apartments Queen Street BRISBANE

Sunday 1st August, 2004 - 3pm

Present

CJD Support Group Network Pty. Ltd - Australia
Carol Wilson – Director - Coordinator
Suzanne Solvyns – Director - Coordinator

CJD Support Network – Japan
Dr Muneto Ueda M.D – Chairman CJD Support Group Network
Professor Kiyohilo Katahira PhD – Department of Social Welfare, The Toyo University
Mr Akira Nakajima – Lawyer
Mr Ibuki Yamamura – Family member of CJD Victim
Miss Katharina Gauchel – Interpreter

Carol and Suzanne met with the Japanese members of the CJD Support Network at their hotel in Brisbane at 3pm and returned to the apartment in Queens Street for a meeting as previously organised via email. The meeting was conducted with the assistance of an interpreter.

The members of the CJD Support Network from Japan were very interested in finding out details of the support group in Australia and also an overview of the CJD situation in Australia. Suzanne and Carol explained the support group, it’s purpose, present role, and future aims.

Discussed

New Infection Control Guidelines in Australia

Health Care Associated CJD cases in Australia including Dura Mater which was of particular interest to the Japanese CJD Support Network.

Background information on the hPH program in Australia, establishment of support services including counselling services, legal actions undertaken by recipients, and information on the ex gracia payments.

Japanese support network members explained the involvement of the support network in Japan. The support network was originally established to support victims and family members of health care related (Iatrogenic) CJD following people receiving dura mater grafts during neurological procedures, but is now assisting victims and families of all forms of CJD and prion disease. Dura mater continued to be used in Japan until 1997 although usage ceased in most countries around 1990 after evidence of a death. In Japan, as the incubation period ranges from 3 – 30 years they fear many more case may occur directly connected to dura mater grafts. 20,000 people a year were treated with dura mater in Japan approx 400,000 in total.

In Japan, the use of dura mater grafts until 1997 has so far been responsible for 105 deaths due to health care associated CJD. In Australia this figure is only 5 with only 5000 – 10,000 recipients of dura mater grafts.

In Japan, ongoing compensation for victims of cases of Health Care associated CJD due to dura mater, continues following previous legal action.

The Japanese CJD Support Network advised that with continuation of research in Japan they are hopeful of leading the world with a test or cure.

Carol Wilson & Suzanne Solvyns