On June 8, 2022, parents of children with disabilities staged a protest outside the State Palace, holding their children and demanding an increase in the availability of medication for cerebral palsy. Despite their efforts, the medications for these conditions remain in short supply and are not easily accessible. Patients, who often experience two to three falls a day or more than 60 falls a month, suffer in ways that many people find hard to understand. Parents and caregivers of those with cerebral palsy, paralysis and frequent falls say that each fall causes significant hardship for their families. For people with these conditions, it can feel like their world has been turned upside down, leading to social exclusion and a lack of equal access to health and education services.

Additionally, anti-seizure medications, essential for those living with epilepsy, are still in short supply. For years, the government has failed to register high-quality medications and, instead, has pushed low-quality alternatives onto the market. Many decisions made by authorities in the past have ignored or excluded those with epilepsy, leaving them without the support they need. Epilepsy, which often begins in childhood, requires long-term medication, but the lack of access to treatment in Mongolia means many patients must live with lifelong drug dependence. Without proper medication, their survival is at risk.

In the past, parents and caregivers have protested at the Ministry of Health and in the central square, calling for the government to control the price of medication and ensure its availability. The government only began to respond after the parents marched to the State Palace on June 8, 2022, drawing public attention to the issue. Following the protest, the Minister of Health addressed the matter, and Prime Minister L.Oyun-Erdene met the parents on September 9 of that year. The prime minister instructed Minister of Health S.Enkhbold to expedite the registration of medications for cerebral palsy, paralysis and seizures, make these medications fully covered by the state, and ensure their urgent availability. 

Furthermore, the government was tasked with collaborating with medical teams from developed countries to provide treatment in Mongolia, ensuring that children with these conditions could receive care locally. The authorities were also instructed to improve the infrastructure for early detection, prevention, diagnosis, treatment and rehabilitation of developmental disabilities, including providing necessary human resources, diagnostic equipment, medicines and financial support. Despite these efforts, citizens report that the problems remain unresolved. Medicines are still in short supply, and the government has not fulfilled the promises made during the protests three years ago. The situation for people with epilepsy and other disabilities continues to be dire.

The government even ignored an official letter requesting the registration of high-quality, effective and widely used drugs for people with epilepsy and other disabilities. A month after the prime minister’s announcement, during the parliamentary session, then Minister of Health S.Enkhbold stated, “The state is taking full responsibility for the medications of people with disabilities and children under 18. Our country has specific procedures for registering drugs. Parents of children with epilepsy have requested South Korean drugs. If suppliers bring them in, we will register them. We have already brought in other necessary drugs and are providing a 100 percent discount through health insurance.” However, parliamentarian B.Jargalmaa raised concerns, saying, “While the state promised a 100 percent discount on anticonvulsant drugs, only 70 percent is being supplied. Many drugs are not registered in the state registry. Even though it’s claimed that 75 drugs of 25 generic names are provided at discounted prices, this is not being fully implemented.”

The issue of epilepsy medication was also brought up during a hearing on medications held in April the previous year. When discussing the inclusion of cerebral palsy and anti-seizure medications, problems related to the importation of weight loss drugs and the misuse of insurance funds were uncovered but quickly addressed. In February 2023, the General Health Insurance Administration announced that 77 types of anti-seizure medications would be available with 100 percent discounts for children and 70 percent for adults. This discount was based on the revised list of essential drugs approved by Resolution No. 11 of the National Health Insurance Council, which amended List X and List III of essential drugs covered under health insurance. However, upon closer inspection, List X included only 13 types of anti-seizure drugs, and List III included just seven types of medications for children. Therefore, the promised 77 types of anti-seizure drugs were not actually part of these lists, contrary to what ministers and health officials had reported.

Despite the ongoing criticism from consumers about the poor quality, low dosage, high cost and ineffectiveness of state-registered anti-epileptic drugs, the authorities have turned a blind eye and ignored these issues. Many patients, after receiving treatment from foreign doctors and hospitals with better-quality medications, return home only to find that the drugs available locally are inadequate. This discrepancy between what is promised during protests and meetings and the reality of unfulfilled commitments has left parents of children with disabilities, paralyzed citizens, and civil society organizations exhausted and frustrated.

A professional working in the field of cerebral palsy and epilepsy stated that while the Ministry of Health had promised to register and supply widely used, effective medications that have worked for many epilepsy patients globally, they continue to offer excuses for not following through. Some essential drugs are already out of stock, and the import of drugs by official supply organizations has ceased. As a result, individuals have started importing these drugs themselves, but at significantly higher prices. For example, a 20-pack of drugs imported from Russia, which should cost around 12,000 MNT, is being sold to patients for 60,000 MNT. Drugs imported from South Korea are even more expensive, often being sold at inflated prices.

The cheaper, state-registered drugs that are available through health insurance are often unsuitable and ineffective for patients. The government seems more interested in pushing cheap drugs through insurance systems, allowing drug suppliers to buy them at a low cost and sell them to citizens at several times the price, all while receiving compensation from insurance. This situation prioritizes business profits over the needs of patients, who are seeking quality, effective treatments.

The government’s failure to manage the supply, distribution and monitoring of anti-seizure medications for epilepsy patients has left the market in the hands of a few private pharmaceutical companies. Allegedly, behind these private companies are the names of high-ranking government officials. This has created a situation where the suffering of approximately 15,000 epilepsy patients is being exploited for profit, with prices being set arbitrarily. During the 2022 demonstration, officials had promised that they would register and license the drugs that citizens demanded and needed, but this has not materialized.

In the absence of proper state regulation, individuals without pharmaceutical licenses have begun importing and selling anti-seizure drugs on the black market, sometimes under the guise of one-time licenses. These individuals have made large profits and, in some cases, even obtained licenses to operate pharmaceutical supply organizations, where they continue to sell the medications at high prices in collusion with pharmacies. As a result, anti-seizure medications are increasingly being taken out of the hands of the state and placed into private control. This raises concerns that one day these private companies could exploit citizens by charging sky-high prices and threatening to stop the supply altogether, making it impossible for patients to afford their medications.

Many patients with cerebral palsy and epilepsy openly acknowledge that they are currently obtaining their medications from private individuals or through prescriptions, rather than relying on state-approved drugs. As mentioned earlier, the medications officially available in the country often do not suit their needs, fail to work effectively, and even when taken in the correct dosages, do not relieve the constant pain of two or three or more seizures per day. According to the National Statistics Office, the Health Insurance Fund allocated significant amounts in discounts for anti-seizure drugs - 763 million MNT in 2020, 3.02 billion MNT in 2022, and approximately 5 billion MNT in 2023. However, seriously ill citizens and children have seen little to no benefit from this funding, and it has had minimal impact on improving their health.

The clinical guidelines from the National Institute of Health and Medical Research state that anticonvulsant drugs must be tailored individually for each patient, depending on the type of epilepsy or cerebral palsy. These guidelines emphasize that 80 percent of patients should experience seizure relief with the correct medication. They also warn that stopping, interrupting, or altering the dosage without a doctor’s supervision can increase side effects and trigger more seizures. As such, patients are advised to take these medications regularly and under medical supervision for an extended period.

In the past, the supply of anti-seizure medications has been neglected, leading individuals without a licensed drug supply company or pharmacy to become the “owners” of the drug trade, arbitrarily setting prices and controlling the supply. In such a scenario, one might ask: where is the Drug and Medical Device Supervision and Regulation Agency, whose mission is to “provide every citizen with quality-assured, safe, and effective drugs and medical devices, and improve their quality of life”? Can the agency remain passive while private individuals turn the supply of essential medications for over 10,000 epilepsy patients into a mafia-style network, manipulating both prices and availability?

The General Health Insurance Administration had announced that 77 types of anti-seizure medications would be available with a 100 percent discount for children and a 70 percent discount for adults, in line with a revised list of essential drugs approved by the National Health Insurance Council. However, the reality is quite different. As we previously reported, only 20 anti-seizure drugs are actually included in List X and List III of the Essential Medicines for Children. These drugs, though provided at a discounted price through health insurance, are not widely used by patients due to their low effectiveness, poor quality and low doses. As a result, patients often purchase better-quality drugs from private resellers, even though they are more expensive, because they provide better relief.

One patient’s guardian, Citizen D, shared their experience, “My brother has been taking anti-seizure drugs since 1996, starting as a child. For 29 years, he has taken medication every day under the care of others. Initially, he took 200 milligrams of medication three times a day. The dosage increased over time, and when it stopped being effective, the drug was changed. Medications are typically used in combination, with one drug being taken for an average of five years before being replaced. Recent studies suggest that seizure medications should be changed every six months. Unfortunately, in our country, such information is lacking, and support services are still inaccessible. Despite being under the care of a neurologist for many years and trying many different medications, my brother’s condition has only worsened.”

Citizen D went on to explain how the quality of medications provided by health insurance is poor. “The medications we get through insurance are really ineffective. Even after taking them, my brother still has seizures two or more times a day. Medications are supposed to alleviate suffering and prevent seizures, but these just don’t work. Most of the medications prescribed by doctors are not available in Mongolia, and we have to import them at our own expense. Since taking the wrong medication can do more harm than good, families of patients with seizures or paralysis often turn to private individuals to purchase higher-quality medications.” D’s guardian added, “We buy from individuals when we can afford it. When we can’t, we have no choice but to take what’s provided by insurance.”

This situation highlights a deep failure in the system that has left patients and their families struggling to access quality, affordable medications. Instead of relying on the promises made by the government, families are forced to turn to unreliable and expensive alternatives to ensure their loved ones receive the care they need. Meanwhile, the relevant authorities seem to be either unaware or unwilling to address the systemic issues that are causing such suffering.