Rare disease treatment map sparks controversy

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On July 3, the Chinese Organization for Rare Disorders (CORD) issued an open letter addressing “serious problems with professionalism and accuracy” in JD Health’s “rare disease treatment map”, causing concern throughout the sector.

According to the China Philanthropist magazine, after the release of the news, JD Health contacted CORD to reach an agreement on further revising and improving the map of rare disease treatments.

However, the resulting doubts have not dissipated. Rare disease patients, industry professionals, experts and academics believe that the errors in the treatment map highlight the standardization and transparency problems existing in the development of the industry’s infrastructure.

Problems with the map

On June 30, Zhang Zetian, wife of JD’s founder Liu Qiangdong and honorary chairperson of JD Foundation, shared her views and understanding of philanthropy at a forum on women’s strength. She talked about the rare disease map project launched by JD Health, saying that the map can help patients with rare diseases quickly match with doctors and relevant hospitals for online consultations, saving patients time and money. The video quickly gained traction online.

CORD immediately issued an open letter, pointing out that JD Health’s rare disease treatment map has problems in terms of its professionalism and accuracy. CORD revealed that on March 15, the organization officially sent JD Health a letter of advice regarding the map, with the company replying that they would prioritize revising it. However, on the same day that Zhang shared the rare disease consultation map project, CORD checked again and found that the problems they pointed out still exist.

CORD said that the map covered 143 diseases, involving more than 2,000 pieces of information on appropriate treatments, of which about 40 percent were ineffective, such as only listing hospital information rather than specific doctor information. The lack of accuracy and professionalism is reflected in many aspects, such as the lack of information on authoritative doctors.

Credibility in doubt

Currently, there are about 20 million patients with rare diseases in China. Difficulties with getting an accurate diagnosis, a lack of drugs, and high drug prices are the three major problems in the diagnosis and treatment of rare diseases.

In 2019, the National Health Commission asked the China Rare Disease Alliance and Peking Union Medical College Hospital to lead the compilation of the first Rare Disease Diagnosis and Treatment Guide, and in the same year, the National Health Commission announced the establishment of a national rare disease diagnosis and treatment collaboration network, with the network consisting of 324 hospitals across the country.

Tech giants have also accelerated their efforts to provide medical services. In addition to investing in and acquiring medical companies and projects, the tech firms are also participating in the competition. For example, Ali Health also launched its rare disease access map on Feb 27 this year, the day before International Rare Disease Day.

Fu Qiang, head of Beijing Youth Partner Management Consulting Company and a family member of a sufferer of a rare disease, said that businesses and social organizations investing resources and technology in the field of rare diseases “are better than nothing”, but he also said that the maps are not significantly helpful for such patients.

According to Fu, when families encounter rare diseases for the first time, the process of receiving a diagnosis is crucial but time-consuming. Because in general people are not familiar with the pathological manifestations of these kinds of diseases, they often end up wasting time when they first start to look for help.

Xuanwu Hospital of Capital Medical University’s Li Haifeng told the China Philanthropist magazine that treating rare diseases is highly specialized, and the certification of professional centers and doctors can not simply rely on rare disease organizations or private companies, nor can it be determined simply by the number of published studies and papers. It is necessary to consider factors such as the number of patients received by the diagnosis and treatment centers and doctors each year, and the conditions at treatment facilities.

Paid advertisement rankings

A similar view was expressed by Qing Zhao, founder and director of the Beijing Aili Myasthenia Gravis Rare Disease Care Center, a social worker who is also a myasthenia gravis patient. In Qing’s view, the launch of the rare disease treatment map allows more people to pay attention to and understand rare diseases, and its goal is to break through the information barrier and facilitate patients, so it should be encouraged.

However, its symbolic and advocacy significance are greater than practical value. “It seems that this map is not based on in-depth research on rare disease patients, or on any in-depth dialogue with relevant organizations,” Qing said. “There’s plenty of room for improvement in the future.”

In addition, what worries many such patients, industry professionals, experts and academics the most is whether this is a paid listing, or is there an advertisement ranking for doctors and hospitals in the rare disease treatment map?

In 2016, the Wei Zexi incident exposed Baidu’s medical advertisement ranking, causing significant controversy. Qing’s organization, together with dozens of others, protested to Baidu following the incident.

Qing pointed out to China Philanthropist that Hebei Yiling Hospital, which had been ranked on the Baidu platform because of their advertisements, also appeared on the JD Health rare disease treatment map, and appears near the top in search results. “So our question is, is this a paid ranking list? From the perspective of commercial organizations, we suspect that the platform wants to use this map to earn some quick cash, and if that’s the case, they will ruin their credibility and our trust,” Qing said.

Moreover, the controversies surrounding the map also highlight other problems such as the lack of an information database of rare disease patients nationwide, and that there are information barriers between hospitals.