45 drugs for rare diseases in China have been included in the National Medical Insurance Drug List,

This means that our country is targeting rare diseases.

The drug guarantee mechanism has been continuously improved, and efforts are also being made to provide better protection for patients with rare diseases.

45 drugs for rare diseases in China have been included in the National Medical Insurance Drug List

When it comes to rare diseases, many people's first thought is that it is difficult and expensive, and many times the cost of a drug for rare diseases is as high as thousands or tens of thousands of yuan, and the frequency of use of drugs for this rare disease is not high, and many hospitals cannot equip it. At present, there are tens of millions of rare diseases in our country, and there are new patients every year, so that such a huge group of patients spends a lot of money on drugs, and most of the rare disease drugs are purchased by patients at their own expense and cannot be reimbursed by medical insurance.

After understanding these situations, our country's medical insurance institutions have reduced the number of rare disease drugs through negotiation of access to rare disease drugs, and 45 rare disease drugs have been included in the national medical insurance drug list through negotiation, which is to allow rare disease patients to get better medical security.

The drug guarantee mechanism for rare diseases is constantly improving

It is precisely because our country is constantly adding some rare disease patients every year that the country will establish a multi-party financing rare disease guarantee mechanism, and continue to improve it, in order to improve the level of diagnosis and treatment services for rare disease patients, enhance the guarantee ability of rare disease drugs, better provide more protection products for rare disease patients, and do its best to give rare disease patients basic medical rights.

In the past, many patients with rare diseases did not have targeted drugs.

In order to include these rare disease drugs in the medical insurance, the state came forward to negotiate medical insurance and "exchange volume for price", which is the result that dozens of rare disease drugs are now included in the national medical insurance drug list, which is also to save the lives of rare disease patients to a greater extent, so that they can live well.

It means that the scope of medical insurance drugs in China has been expanded, which is of great help to the masses of people to solve the problem of "expensive medical treatment".

For many people, it will definitely be a lot cheaper to see a doctor. It's not as difficult as it used to be.

Cracking the "expensive medication" 45 kinds of drugs for rare diseases in China have been included in the national medical insurance drug list.

The reporter learned from the 2022 China Conference on Rare Diseases held in Beijing that the 2022 National Medical Insurance Drug List will be adjusted, and a separate declaration channel will be opened for drugs for rare diseases, and it will be supported to give priority to entering the medical insurance drug catalog. Up to now, 45 drugs for rare diseases have been included in the National Medical Insurance Drug List, covering 26 rare diseases.

According to data from the China Alliance for Rare Diseases, there are more than 20 million patients with various rare diseases in China, with more than 200,000 new patients every year. In the face of the increasingly large number of rare disease patients, the pace of drug protection must continue to accelerate.

The National Health Insurance Administration (NHSA) has reduced the use of drugs for rare diseases through negotiation of access to drugs for rare diseases**. Huang Huabo, director of the Department of Pharmaceutical Service Management of the National Health Insurance Administration, said that since 2018, 19 new drugs for rare diseases have been added to the list of medical insurance drugs through negotiations, and the average price has been reduced.

Huang Huabo said that considering that some negotiated drugs, including drugs for rare diseases, are high, the frequency of use is low, and there are indeed certain difficulties in hospital allocation, China has established a "dual channel" mechanism, so that hospitals do not have advanced pharmacies equipped with negotiated drugs for the time being, and implement the same reimbursement policy as hospitals to alleviate the "urgent need" of patients.

Establish a monitoring mechanism for drugs for rare diseases, improve the level of R&D and industrialization of drugs for rare diseases, support the participation of traditional Chinese medicine in the prevention and treatment of rare diseases, and promote the establishment of drug reserves with normal shortages at the local and local levels. Wang Jiangping, Vice Minister of the Ministry of Industry and Information Technology, said that China has taken a series of measures to improve the level of drug protection for rare diseases.

According to reports, in the next step, China will continue to explore and improve the drug guarantee mechanism for rare diseases, continue to promote the adjustment of the national medical insurance drug catalog, improve the negotiation drug allocation mechanism, and strengthen the policy convergence and loss, give full play to the multiple protection functions of macro and quiet basic medical insurance, serious illness insurance, and medical assistance, and strive to provide better protection for patients with rare diseases.

45 drugs for rare diseases in China have been included in the National Medical Insurance Drug Catalog, covering 26 rare diseases, with an average price reduction.

According to data from the China Alliance for Rare Diseases, the total number of rare disease patients in China is about 20 million, and the number of new cases is about 200,000 every year. Patients with rare diseases generally face the problem of few available drugs and diagnosis and treatment methods, and the high cost of some rare diseases. In this regard, Huang Huabo, director of the Department of Pharmaceutical Administration of the National Health Insurance Administration, said that on the basis of adhering to the functional positioning of "guaranteeing the base and selling the capital", the bureau has solved the problem of expensive drugs for rare diseases by continuously improving the access mechanism of the medical insurance catalog for rare disease drugs.

Up to now, there are 45 kinds of drugs for rare diseases in the National Medical Insurance Drug Catalog, covering 26 kinds of rare diseases, with an average price reduction, and the drugs for rare diseases have been equipped in 4,695 medical insurance designated medical institutions and pharmacies across the country during the agreement period.

From 2019 to 2021, we continued to reduce the use of drugs for rare diseases through medical insurance negotiations**, and compared with the pre-negotiation period, the cost of reimbursement for rare diseases was reduced. Huang Huabo said that considering that some negotiated drugs, including drugs for rare diseases, are high, the frequency of use is low, and there are certain difficulties in hospital allocation, China has established a "dual channel" mechanism, so that hospitals are temporarily not equipped with advanced pharmacies for negotiated drugs, and implement the same reimbursement policy as hospitals to alleviate patients' drug needs. The National Health Insurance Administration also instructed all localities to include some rare diseases with long cycles and high medical costs into the scope of outpatient special disease insurance.

Up to now, 2,860 drugs have been included in the national medical insurance catalog, and 67% of the drugs for rare diseases on the market in China are among them, which greatly reduces the drug burden of patients. In the past 10 years, the number of people insured by medical insurance in China has increased from 100 million to 100 million. At the same time, China has built the world's largest basic medical security network.

At present, China's basic medical insurance has covered 100 million people, the coverage rate is stable at more than 95%, and the proportion of hospitalization expenses paid within the scope of the basic medical insurance policy for employees and urban and rural residents is stable at about 80% and 70% respectively. The data shows that the main health indicators of Chinese residents are in the forefront of middle- and high-income countries. The proportion of residents' personal health expenditure has decreased from 2012 to 2021, making it more convenient, affordable, efficient and smoother to seek medical treatment.

As previously reported, "rare diseases" are not uncommon. According to the official website of the American Organization for Rare Diseases (NORD), there are currently more than 7,000 known rare diseases in the world, 80% of which are genetic diseases. While the number of patients with each disease is not large, the number of people affected by thousands of rare diseases is enormous.

According to Nord's official website, there are more than 300 million rare disease patients worldwide, 50% of whom are children. According to the 2021 China Rare Disease Definition Research Report, there are about 20 million rare disease patients in China.

About 80% of rare diseases are caused by genetic factors, and some rare diseases can be diagnosed by genetic testing**, and clinicians with the diagnostic technology and ability of such rare diseases are concentrated in the tertiary hospitals in some provincial capitals of Beijing, Shanghai, Guangzhou, Shenzhen and Shichan.

Clinicians in third- and fourth-tier cities are very difficult to independently diagnose rare diseases due to their lack of professional knowledge related to rare diseases, lack of clinical experience, and limited technical facilities.

China is the only country in the world that delineates rare diseases according to the management of batch disease catalogs. Based on the 121 rare diseases in the "Catalogue of Rare Diseases for Type 1 Returned Batches", 86 rare diseases have the best drugs in the world, of which 77 rare diseases have the best drugs in China, and 9 rare diseases are facing the dilemma of "there are drugs outside the country and no drugs in China". In China, there are 87 drugs with clear indications for rare diseases, involving 43 rare diseases, of which 58 drugs have been included in the national medical insurance as of 2021, covering 29 rare diseases.

Although China's medical security system has made great progress after the reform and opening up, achieving a basic medical security system covering the entire population is only the first step, and it is still far from universal medical insurance in the true sense。There are still many problems in China's medical insurance system in terms of insurance system, system differences, and fee control mechanisms, which affect the fairness and efficiency of the system. In addition, the problems existing in China's medical service system also have an important impact on the effective operation of the medical insurance system.

At present, 2,860 expensive drugs on the market have entered the national medical insurance catalog, and about 76% of the drugs for rare diseases have also been included in the medical insurance, which has greatly reduced the economic burden of disease patients in the country. In the past decade, China has increased from 100 million people participating in national medical insurance to 100 million people. China has also become the first country in the world to have the largest number of insured people, but this does not mean that China's health insurance system has matured.

At present, China's medical insurance is divided into urban employee medical insurance and resident medical insurance, and there are huge differences and shortcomings between these two types of medical insurance. There are huge differences in the level of financing and welfare protection between different health insurance systems and between different regions under the same health insurance system, reflecting that the current health care system needs to be improved in terms of fairness.

The per capita financing level of basic medical insurance for urban workers is about 2,600 yuan, and the financing level of basic medical insurance for urban and rural residents is about 400 yuan, which is twice as much as the latter two. In terms of basic medical insurance for urban and rural residents, Shanghai, which has the highest level of financing, is more than four times the national average. Gaps in the level of financing inevitably lead to gaps in the level of security.

For example, the actual reimbursement ratio of hospitalization expenses of employee medical insurance is about 83%, while the actual reimbursement ratio of hospitalization expenses of resident medical insurance is only about 50%, and the gap is obvious. In fact, due to the concentration of high-quality medical resources in big cities and large hospitals, there is also a big gap between urban and rural residents and residents in various regions in the quality of medical services they enjoy.

China's medical insurance system still lacks a wider range of social insurance, because there are more than 1,200 rare diseases in China, and not all of them have yet been included in social insurance.

Just recently, the National Health Insurance Administration issued an announcement on the progress of the adjustment of the medical insurance catalogue in 2022, one of the major features of which is that the policy is appropriately tilted towards special populations such as rare diseases and children. Because a total of 344 drugs have passed the preliminary review in this adjustment, including 19 drugs for rare diseases, and these 19 drugs for rare diseases have been included in the national encouragement list, it is very likely that they will eventually be included in the medical insurance catalog.

At present, China's medical system is not very comprehensive, and there are many diseases that are still not covered by medical insurance, and the scope of medical insurance will be improved and expanded one after another.

The first is to strengthen the drug protection for patients with rare diseases. Most of the symptomatic drugs for rare diseases, as well as drugs for rare diseases such as hemophilia, idiopathic pulmonary fibrosis, and amyotrophic lateral sclerosis, have been included in the medical insurance list. In the adjustment of the national medical insurance catalog, the first drugs for major diseases such as rare diseases are mainly considered.

Drugs for rare diseases, such as primary carnitine deficiency and young Parkinson's disease, were newly added to the list. Drugs for rare diseases, such as pulmonary hypertension and Niemann disease type C, have been included in the catalogue through access negotiations, and ** have dropped significantly.

The second is to give priority to ensuring the use of drugs for orphans and the determination of the scope of diseases. Prioritize the issue of orphan drugs that can be associated with rare diseases, and ensure that patients with rare diseases with clear diagnosis and effective treatment are fully protected. Since there are more than 6,000 rare diseases in the world, it is impossible to include all of them in the insurance system in a short period of time.

Therefore, the degree of social acceptance and national affordability should be taken as an important basis, and they can be gradually incorporated according to priority. Mainly in social medical insurance and public financial funds; At the same time, social charitable donation funds can be used as an important supplement. Promote multi-party payment models.

In addition, the accessibility of medical insurance for rare diseases has been significantly improved. Although drug price reductions are inevitable, the strategic procurement logic of exchanging volume for price is also valid in the field of rare diseases. Judging from the changing trend of drug sales after previous national negotiations, entering the national medical insurance catalogue is a necessary admission ticket for rare disease drugs.

Outside the national medical insurance catalog, some regions are actively exploring the inclusion of innovative drugs for individual rare diseases in different forms of local supplementary insurance.

It is important to know that there has been no significant increase in drug spending on medical insurance** and insured patients. Under the premise of overall controllable safety, the ability and level of medical insurance drug protection have been improved. More importantly, it can further guide pharmaceutical companies to form a reasonable and healthy value trend, and ultimately promote the high-quality development of China's pharmaceutical industry from the perspective of strategic purchasing by supporting innovation and value purchase, and deepen the supply-side reform of the pharmaceutical industry.