From August 3rd – 6th 2019 the Chinese OI society (China-Dolls) celebrated their 10th anniversary in Yantai in the east of China. They organized a medical conference two days before the meeting. During this conference three international experts (Dr. Frascini from Italy, Dr. To from Hong Kong and Dr. Semler from Germany) gave lectures and discussed treatment strategies with 50-60 colleagues from China who are interested in OI.

6th national conference for people with OI in China

On the last day of the conference the doctors were seeing 30-40 people with OI, answered their questions and gave advise for further treatment. The questions covered all areas of OI therapy from bisphosphonates to dental problems and scoliosis. It was interesting to see, that many patients had a quite good surgical treatment, but the situation regarding wheelchairs and walking aids was really poor. There are no adapted wheelchairs available in China and also no walkers can be used. No equipment is adapted to the size of the person and no special devices are available for children. Many children are sitting in wheelchairs for adults and are not able to move on their own because they can not reach the wheels or the chairs are too heavy for the muscle power of a child.

The medical system in China offers a very basic health care to all people and differs from province to province. In some parts of the country a treatment with bisphosphonates or rodding of extremities is reimbursed but in other area this has to be paid. Because these treatments are expensive people with OI are often depending on support from charity organizations. China-Dolls as the national patient organization is very active in fundraising and charity events to collect enough money to offer support for medical treatment to as many OI people as possible.

10th anniversary of China-Dolls

The annual meeting of the society took place at a nice hotel close to the Chinese sea in Yantai. About 200 people were participating in the conference. People with OI of all ages and their parents or partners were present and discussed how they handled their problems in daily life. The meeting started with an official opening ceremony which took more than 3 hours. A lot of certificates were handed to people who supported China-Dolls in the past – and hopefully in the future. During the next 2 days many workshops were held including topics like “independent living” and “sexuality”.

I had the honor to represent OIFE at the meeting and to give a talk about activities of OIFE during the meeting. It was interesting how much the aims of China-Dolls differ to those of OIFE. In China the main goal of the patient organization is to provide a good medical care for all people with OI. Therefore, fundraising is extremely important but also political work on the national or regional level. High ranked representatives of the administration have the possibility to include some specific treatments into the national health plan and then these drugs or surgical procedures will be covered by the national insurance. Therefore, a lot of political work is still required to provide sufficient medical treatment to all people with OI in China. Other topics like selfcare and participation in social and economic life were also discussed but are not that much in the focus of the society at the moment as they are in Europe.

Collaboration for a better future

The whole meeting expressed a very positive mood and China-Dolls has a lot of reasons to be proud what they have achieved in the past. During the tea-breaks (coffee was very hard to get) there were very lively discussions between the participants, the officials and everybody around. In the hall and on the corridors, there was the usual chaos which is the same at all OI meetings and seems to be a characteristic of OI.

Altogether it was an interesting trip and impressive to see what China-Dolls have already achieved in a communistic country. I am sure that the situation in China will improve very fast in the future and that a closer cooperation between China-Dolls and OIFE can be beneficial for both sides in the future.

Written by Dr. Oliver Semler, Chair of medical advisory board of OIFE