Controversy has erupted over a drastic reduction in special dietary support for pediatric Crohn's patients under 19, which had been available with a doctor's diagnosis.

Parents of children with Crohn's disease who have been restricted in their food intake due to the inflammatory disease of the intestines say that the stricter criteria, which limits the duration of support to a maximum of one year after eight weeks of intensive treatment, will lead to poor nutrition and affect their growth.

The government supports congenital metabolic disorders, including phenylketonuria, and rare diseases, such as Crohn's disease and biliary atresia, through the Special Dietary Support Project, which covers the cost of specialty formulas and low-protein instant steamed rice regardless of income.

Until recently, in the case of pediatric Crohn's disease and short bowel syndrome, first-time applicants and recurrent patients have been provided with 100 percent of their daily needs for eight weeks of intensive treatment if they attached a medical certificate and test results and one packet per day or two packets per day for liquids if they submitted a medical certificate every six months after intensive treatment.

However, in mid-March, the Ministry of Health and Welfare notified public health centers of the changes in support standards for rare and other diseases and decided to reduce support for special diets from April 1.

According to the proposed changes to the support standards notified by the ministry to public health centers, the initial application will provide 100 percent of the required amount during the eight-week intensive treatment period, and once the intensive treatment is over, one packet per day or two packets per day of liquid will be provided for up to one year.

Previously, relapses outside of the initial application were covered. However, if a person has received one year of support, they will no longer be eligible for special dietary needs.

In addition to a medical certificate, a nutritional status assessment must be submitted to receive special dietary support.

When these guidelines were sent to families through public health centers, parents of children receiving support expressed disgruntlement.

“One packet a day is barely enough for a growing child to get essential nutrients,” said a caregiver of a pediatric Crohn's patient. “The government ignores the suffering of our children, who are malnourished and at risk of stunted growth because they have a lot of food to avoid, and the food they can eat is limited.”

“Even a year after diagnosis, children's health status varies, and few of them are healthy and do not need special diets,” the mother said. “My child has not regained the weight he lost before diagnosis and is not growing properly.”

Another child's guardian said, “My child is already being bullied and teased because he is shorter and smaller than his friends because he is not eating well and not absorbing enough nutrients, and they are not letting him eat even the special diet that he can eat. Please help him to be treated well and grow up.”

Many of them say they need to eat to survive, but if government support is cut off, they will no longer be able to afford it.

“My boy has multiple autoimmune diseases (Crohn's, Behcet's, and rheumatoid arthritis), and even a slight dip in his condition causes his physical functioning to deteriorate significantly. I bought special meals because there was a long time gap before the certificate was issued. Still, it cost about 1.6 million won ($1,113) for two months for two sachets of the minimum amount per day,” a pediatric patient’s parent said. “I couldn't feed him with peace of mind because of the financial burden. Even though he is my only child, I'm afraid that the support will end a year after the intensive treatment period.”

“The boy can't even eat comfortably because of the toilet problem. If the special diet support is cut off during the growth period, it's like telling him not to grow up for the rest of their adolescence,” she added.

After the government’s move, the Group of Korea Crohn’s Disease Patients surveyed its members and collected their problems and needs regarding reducing exceptional dietary support.

Based on this, the group requested the ministry to review the reduction of special dietary support for children with Crohn's disease.

“Due to nutritional imbalance caused by diarrhea, abdominal pain, and weight loss, children with Crohn's disease have difficulty growing,” said Kim Jeong-eun, who leads the organization. “Special diets can help children with stunted growth by relieving inflammation and providing proper nutrition.”

While steroids, immunomodulators, and biologics are used to control and maintain inflammation in Crohn's disease patients, special diets are a common treatment for pediatric Crohn's disease patients who have limited access to medications, Kim said. Patients who are disconnected from support are more likely to neglect their special diets, which can lead to poor nutrition and stunted growth if timely treatment is missed, she added.

“The reduction of support for pediatric Crohn's disease patients who need special diets on an ongoing basis could put a huge burden on their families,” Kim said. “If the disease worsens, they will need expensive drug treatment and even surgery, which will create another social cost.”

Kim also pointed out that the policy change, which took effect on April 1, was only communicated to patients and their caregivers after mid-March.

“It seems that some members were informed by phone or text on March 19 that the policy would be changed,” Kim said. “It is difficult to understand that the policy that will be applied from April was informed in mid-March.”

However, the ministry maintains that the reduction in special dietary support reflected experts’ opinions. Officials said it also resulted from the changing paradigm of Crohn's disease treatment.

An official from the ministry's Childbirth Policy Division said, “We understand patients' feelings. The government has been providing free support even if it exceeds the budget. However, there are parts (of supports) being used inconsistently with the rules, and so the government is looking at the policy based on evidence.”

“After consulting with experts, it was decided that patients should be on a full light diet during the eight-week intensive treatment period, but there is a lack of evidence (for special diets) regarding treatment,” the official said. “In the past, the treatment paradigm for Crohn's disease was a ‘step-up’ method, starting with special diets, then moving to milder, stronger, and biochemical agents. However, it is a ‘top-down’ method that starts with stronger drugs and eliminates inflammation, so there are parts of the treatment where special diets are less necessary.”

The official regretted that the policy was implemented without a sufficient grace period.

“We had to consider the efficiency of budget execution. On the other hand, however, it was not a matter of convincing patients with a grace period or explanation,” he added.