Patients suffering from rare diseases lack essential 'special foods'

Cai Wenjun
A recent survey from Xinhua Hospital has noted a lack of "special foods" for rare-disease patients, with many of these foods considered an essential part of treatment.
Cai Wenjun

Many domestic patients with rare diseases, who have specific dietary needs due to their physical ailments, are facing difficulties such as unstable purchasing channels, a lack of supply, quality problems and rising costs. Currently most food for special medical purposes, or FSMP, are not available in the nation or not covered by the official supply channels.

As high as 80 percent of rare-disease patients have encountered at least one outage of their "special food," according to the nation's first survey on FSMP released on Tuesday, the World Rare Disease Day.

"Running out of such special food is extremely dangerous for rare-disease patients. About 38 percent of patients reported damage to their health, and 53 percent reported a potential impact on their health. The situation can also cause severe mental pressure to patients and their families," said Dr Cai Wei from Xinhua Hospital, which led the survey.

The major route to get FSMP is also challenging, as 58 percent of "special food" is purchased through patient-organized group-buys, 34 percent from hospitals, and the rest from daigou, overseas shoppers who buy foreign products for domestic customers.

The major reasons for such food shortages include a difficulty in transportation and a small supply from producers.

"Among the 121 rare diseases being included in China's first rare-disease list, patients with 32 diseases need FSMP. Among them, the demand from patients with 18 diseases is critical, as such food has very important treatment effects. Patients need timely, abundant and lifelong supply of these foods, or their condition can deteriorate and they may even face disability or death," Cai said.

But the availability of such food in domestic hospitals and other official channels is very limited, and most such food is not covered by government-based medical insurance or other supportive systems, so patients and their families can face strong financial pressure, the survey added.

Also on Tuesday, a comprehensive service center for patients with rare diseases was established to offer medical, financial and psychological support and guidance for patients and their families. A charity foundation to help children with rare diseases was also unveiled on the same day.

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