"The global medication shortage problem is partly caused by lack of demand and misconceptions about generic drugs, highlighting the need for public education and investment in the pharmaceutical industry."

The director-general of the World Health Organization is Dr Tedros Adhanom Ghebreyesus.

The United States is experiencing a severe shortage of medicines and drugs, with 323 drugs affected in the first quarter of the year.

The World Health Organization predicts a shortage of 18 million healthcare workers by 2030.

The Central Pharmacy received 62 cancer drugs between November 1, 2022, and January 1, 2023.

There are multiple classes of medications currently in shortage, affecting various categories of drugs, including non-patented sterile injectable drugs, cancer chemotherapy drugs, emergency drugs, ADHD drugs, and popular drugs like Mounjaro.

China's national health insurance covers 45 rare disease medications, which treat 26 different rare diseases.

There are more than 7,000 known rare diseases globally.

Taiwan is experiencing a shortage of blood lipid-lowering drugs, but the government has stated that this will not cause immediate harm to national health due to the availability of generic alternatives with the same ingredients as Lipitor.

The government should invest in public education to combat the misconception that original brand drugs are superior to generic ones, thereby addressing a form of corruption in healthcare.

One challenge in the healthcare system is the public's limited trust in generic drugs, which can cause panic when original drugs are in short supply.

Generic drugs account for less than 30% of health insurance expenditures.

Blood lipid-lowering drugs, such as those with the same ingredients as Lipitor, have been affected by global shortages, but generic alternatives are available.

"The diabetes medications Ozempic and Mounjaro were affected by the shortage in the US."

"The global medication shortage problem is partly caused by lack of demand and misconceptions about generic drugs, highlighting the need for public education and investment in the pharmaceutical industry."

Title:

Content: Freedom Square, the government is responsible for cleaning up the name of the drug.
◎ Golden Sun
Recently, a global shortage of blood lipid-lowering drugs has occurred, and Minister of Health and Welfare Xue has clarified that this will not cause immediate harm to national health, because there are many generic drugs with the same ingredients as Lipitor that have the function of lowering blood lipids.
The National Health Insurance Administration (NHIA) has been implementing the "three-in-one policy" of "same ingredients, same dosage, and same content" for many years, but once a single original drug is missing, it always causes panic and media reports, and the government has no choice but to respond.
The Association has conducted an online questionnaire, only about 50% of the public have a positive attitude to the three drugs.
Only 41% of people answered “Never before ” because they were worried that the prescription drugs they received at the community pharmacy were different from the original manufacturer.
Even if the mouth of the pharmacist of the community pharmacy flies to explain to the public that the generic drug is not a "fake drug", it is a drug developed by other manufacturers and the same as the original drug, it still cannot change the people's deep-rooted impression, which is not only meaningless lack of drugs panic, but also affects the development of the Chinese generic drug industry.
In China's pharmaceutical industry, scientific name drugs account for about 70% of the health insurance payment items, but they account for less than 30% of the expenditure.
Without demand, manufacturers are unwilling to invest in R & D and manufacturing, and the scale of the industry cannot be expanded. In fact, China's pharmaceutical companies have fully joined PIC / S GMP in 2015, which is in line with international quality.
With the long-term support of the All-China Federation and the cooperation of medical institutions at all levels, most of them have no record of being "irreplaceable," but we have also found that some hospitals still tell the public that they are issuing "original brand" drugs, suggesting that the original drugs are better, giving rise to the myth that the foreign moon is more round.
Minister Hsueh responded that it is a myth to use generic drugs, but relying on primary pharmacists alone has limited effect. What is needed is for the government to invest resources to systematically inculcate the correct concept of generic drugs to the general public. Misunderstanding is also worth thinking about.
Education of the public is a huge project, and the misunderstanding of the public about the name medicine has affected the health insurance system and the pharmaceutical industry, only the beginning of reform can wash the name of the name medicine as soon as possible, and more stabilize the welfare and industrial development of the country's civilian medicine.
(The writer is the president of the Association of Pharmacists and National Policy Advisor of the President ’ s Office.)
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The director-general of the World Health Organization is Dr Tedros Adhanom Ghebreyesus.

Title:

Content: Tuesday, 07 November 2023 01: 24 GMT
WHO: Egypt has developed its national vaccine capacity and reached maturity level 3
Dr Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization (WHO), said in a statement: “The coronavirus pandemic has shown the incredible power of vaccines, tests, treatments and other medical technologies to save lives, but it has also revealed the enormous inequalities in our world, in terms of access to those products, and, of course, this is not the first time. ” When HIV emerged more than 40 years ago, life-saving drugs were developed, but it was more than a decade before the world ’ s poor had access to them.
Egypt, for example, has launched a program.
In January this year, which brings together public and private sector manufacturers with different areas of expertise, Egypt has also developed its national capabilities, and has now reached the third maturity level of the World Health Organization (WHO) regarding vaccine regulation, I congratulate the Minister of Health and Population Dr. Khaled Abdel Ghaffar for the remarkable progress achieved.
Tedros said the program now includes a network of 15 recipient countries around the world, including five in Africa, adding that at the World Health Assembly in 2021, member states agreed on a resolution to boost local production of medicines and other health technologies.
In the same year, WHO and its partners established the mRNA Technology Transfer Centre in South Africa, to build sustainable manufacturing capacity in low- and middle-income countries to combat coronavirus and other global health threats including malaria, tuberculosis and cancer.
He noted that Kenya is also setting up a manufacturing facility from scratch.
During the construction of the KEMRI National Research Institute, he will receive mRNA technology on a research scale to promote the search for new vaccines tailored to the needs of the country and the region.
In India, the BiologocalE Technology Receiving Program is one of the program ’ s most advanced partners, and we have recently begun expanding the Indian network to include academic institutions.
We have also established the first global bio-manufacturing training centre in the Republic of Korea, so that the new facilities can be equipped with a skilled workforce, trained in general bio-manufacturing processes in an industrial environment.
Based on the lessons learned from the COVID-19 pandemic, we have also developed a proposal for a temporary mechanism for equitable access to medical countermeasures.
Commitment to local production and equitable access is also a key part of the epidemic agreement that countries are now negotiating, and the Second Global Forum on Local Production again brings together health, industry, trade and other sectors with manufacturers, civil societies, associations and other key actors.
We expect this forum to stimulate coordination, collective action and partnerships within national and regional ecosystems for technology transfer and sustainable local production.
There are many practical things governments can do, with the support of WHO and other partners, to strengthen the ecosystem for local production.
Provide an enabling environment, with policies and regulations to streamline approval processes, provide incentives for local production, and ensure compliance with quality standards.
Second: Provide investment and financing, through grants, tax incentives or low-interest loans to encourage private sector participation in local manufacturing.
Third, facilitate the exchange of knowledge and technology between the public and private sectors, through the promotion of research cooperation, and support the transfer of industrial knowledge.
Fourth: Building the capacity of the workforce, through training programs to increase quality, improve efficiency, and encourage innovation.
Fifth, ensure market access for local manufacturers by improving supply chain management and expanding market access.
When the H1N1 pandemic broke out 14 years ago, vaccines were developed, but by the time the world ’ s poor had access to vaccines, the pandemic was over.
The COVID-19 Accelerating Access to Anti-Coronavirus Tools Program and the Kovacs facility have delivered nearly 2 billion doses of vaccine to 146 countries, in addition to millions of tests, treatment cycles, medical oxygen and personal protective equipment, but narrow nationalism and hoarding by high-income countries meant many low-income countries got too little and too far. Time. Time.
Similarly, the Korona-19 technology access complex, or C-TAP, was created as an innovative platform for vaccine, testing and treatment developers to share their intellectual property and knowledge with manufacturers in low-income countries, but few manufacturers were willing to participate, so one of the most important lessons learned from the epidemic is that the ability to manufacture drugs, diagnostic vaccines and other technologies is a key component of the epidemic. The tools are concentrated in very few countries.
Expanding domestic production, and strengthening domestic regulatory capacity, is essential to reducing health inequalities between and within countries – not only for tomorrow ’ s environments, but also for today ’ s diseases.
“Access to high-quality medicines is a key priority for WHO and our Member States, ” he said, explaining that since 2018, WHO has supported more than 7,000 manufacturers, regulators and other stakeholders from more than 70 countries around the world to build their local manufacturing capacity. Coronavirus outbreak.
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The United States is experiencing a severe shortage of medicines and drugs, with 323 drugs affected in the first quarter of the year.

Title:

Content: Meitu
The first quarter of the United States serious drug shortage 323 drugs urgent cancer patients also have to be diverted and rationed!
CHU HENG NETWORK NEWS CENTER 2024-04-16 10: 42
According to the latest data from the American Society of Health System Pharmacists (ASHP) and the Utah Center for Drug Information Services, a total of 323 drugs in the United States were in severe shortages in the first quarter of this year, surpassing the record of 320 in 2014.
Among the drugs affected are the widely used diabetes drugs Ozempic and Mounjaro, the allergy treatment drug adrenaline, the common antibiotic amoxicillin for children, chemotherapy drugs and injections commonly used in hospitals in intensive care.
ASHP CEO Paul Abramowitz said in a statement that almost all categories of drugs are facing shortages, with non-patented sterile injectable drugs, including cancer chemotherapy drugs, and emergency drugs stored in hospital emergency vans and operating areas, the shortage of such drugs is the most worrying.
According to the American Cancer Society, chemotherapy is one of the top five drugs most affected by the shortage, which threatens to have a devastating impact on patients, and some hospitals and clinics say doctors have had to divert patients to ration their medications because of a shortage of some chemotherapy drugs.
In addition, ASHP noted that the continued nationwide shortage of ADHD drugs is “a problem for clinicians and patients. ”
The shortage of popular drugs is even more acute, with Mounjaro, the diabetes drug known as the “slimming pill ”, already in dire straits.
In response, Lilly said that the “unprecedented surge in demand ” for Mounjaro and its similar drug Zepbound has led to a shortage in the market, which the company is struggling to cope with.
Lilly is ramping up investments to boost production at Mounjaro and Zepbound in the second half of 2024.
The company said it expects intermittent supply disruptions in the near term due to unprecedented demand.
How to cure the drug shortage
The last major “drug shortage ” in U.S. history occurred in 2014, and it has only been alleviated in the years since.
Since 2021, the drug shortage situation seems to be increasing, and scholars in the field of medical health and economics in the United States believe that the reason for most drug shortages in the United States is the fragmentation of the drug supply chain.
The White House this month proposed spending between $3.26 billion and $5.11 billion over the next decade to help address the nation ’ s drug shortage.
The bill requires approval and funding from the U.S. Congress.
U.S. researchers and policymakers believe that a complete solution to the “drug shortage ” may require changes to the business model of the U.S. pharmaceutical industry, including measures to increase the price of generic drugs to attract more drug manufacturers.
Policymakers recommend giving the FDA more power to access more information about drug shortages and impending shortages.
Currently, the FDA relies primarily on phone calls to manufacturers asking if they can increase their supply to understand the situation.
The American Society of Health System Pharmacists said it is working with the federal government to advise the government on measures to address the drug shortage, including that Congress should require manufacturers to be more transparent on any supply chain issues and encourage more diversity in supply chains.
According to Abramowitz, “The federal government still has a lot of work to do to fundamentally address drug shortages, and the American Society of Health System Pharmacists will continue to engage regularly with policymakers to guide them in drafting and passing new legislation to address drug shortages and continue to advocate vigorously for proven solutions on behalf of our members. ”

The World Health Organization predicts a shortage of 18 million healthcare workers by 2030.

Title:

Content: How natural language processing can help relieve the healthcare worker shortage

This article is brought to you thanks to the collaboration of The European Sting with the World Economic Forum.

Author: Tashfeen Suleman, CEO, CloudMedx

  • The WHO predicts a shortage of 18 million health workers by 2030.
  • A new survey shows the “biggest pain points” affecting these workers: increasing use of tech can add even more layers of documentation.
  • Healthcare workers want to spend more time caring directly for patients, and less on paperwork. Natural language processing (NLP) is a game changer. It can take over a lot of this work, freeing healthcare personnel to spend more time on direct care.

Across the world, fears are rising about a lack of nurses, doctors, and healthcare technicians in the coming years. The World Health Organization predicts a shortage of 18 million health workers by 2030.

There was already a shortage before the COVID-19 pandemic, but the last few years have exacerbated the problem. Experiencing burnout, exhaustion and mistreatment, many in the sector, especially nurses, have quit their jobs. But there are also other reasons for the shortage as well. For example, in the United States, many doctors are reaching retirement age just as the population of elderly people is expanding – meaning more people will need healthcare from fewer providers.

In addition to attracting young people to careers in medicine, other solutions are needed. One of these is to put new, emerging technologies to good use. But this is a very difficult challenge in healthcare. Unfortunately, the sector has a history of bringing in technologies that are meant to help but end up making things more complicated.

Tech as relief and burden

A new global survey of healthcare workers shows how concerned they are about this. A large majority (70%) say they believe digital health technology will enable positive transformation. But virtually the same number (69%) say these technologies will present a “challenging burden.”

I’ve seen this problem in action for years. The most prominent example involves electronic health records (EHRs). These were meant to improve care and make things much more efficient. And while they have brought benefits, they have also increased the amount of time healthcare staff have to spend dealing with documentation.

One study found that time spent on direct patient care dropped by more than 8 percent at one center. Another found that nurses perceive a high workload due to all the documentation. In a survey published in March, U.S. physicians were polled about the “documentation burden” presented by EHRs. Majorities said they’re spending too much time on documentation, and that it’s reducing the time they have for patient care. And one-third said they’re spending two hours or more completing documentation outside of work hours each day.

It shouldn’t be this way. Technologies can be designed to handle more administrative tasks so that healthcare workers spend more time in direct patient care. The more we relieve the documentation burden, the more patients can get the attention they need.

The potential of NLP

Natural language processing is a technology focused on helping machines process information as humans do. Several companies have been working to apply this to the world of medicine.

When doctors and nurses need relevant information from a patient’s healthcare records, they should not have to go digging through long lists of information collected over the years. Instead, technology should be able to read through all the text and automatically pull up relevant information for a patient’s treatment. One study published in 2020 found that specifically designed algorithms could do so with 96% accuracy.

Similarly, healthcare providers should be able to speak into their phones or other devices and have the information they provide automatically entered into healthcare records through NLP. When a patient comes into an emergency department complaining of certain symptoms, NLP can help pull up relevant information from the patient’s records – for example, a family history that could show the patient has an elevated risk for a heart attack. So doctors and nurses would see that information automatically pop up when they open the patient’s file.

Of course, there is always a possibility of machine errors, just as there are possibilities of human errors. It’s important to have healthcare personnel look at the information and doublecheck it. But there’s no need for them to spend extra time finding the information in the first place – just as they should not have to scroll through long forms with lots of text fields in order to input information. Technology should do all that for them.

There are also other ways to use NLP. For example, this technology has been built into AskSophie, a tool in which people can describe symptoms they’re having in order to learn about patients with similar ailments and what’s causing them.

Serving the needs of healthcare workers through technology

NLP is just one tool that can help relieve burdens on doctors and nurses and strengthen global healthcare for the future. Artificial intelligence can help deliver a more holistic approach to health by showing government and healthcare leaders the social determinants of health that must be addressed in different areas. Algorithms can help predict patient flow so hospitals have a better sense of how much staff they’ll need at any moment. And companies are developing new ways to monitor patients in need from afar. The possibilities are endless.

The key is to incorporate the needs of healthcare workers in the development of new technologies. The more people are freed to spend time caring for patients and avoiding burdens of documentation, the more people will join and stay in the healthcare field. This will make the global health outlook only stronger.

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The Central Pharmacy received 62 cancer drugs between November 1, 2022, and January 1, 2023.

Title:

Content: -- -- -- / -- -- --
Site Management
Central Pharmacy announces receipt of 62 drugs to treat cancer patients
The Director General of the Central Pharmacy of the Hospitals, Samir Farhat, revealed that 62 drugs were received for the treatment of cancer patients.
Farhat said on Sunday in a statement to the third radio channel that within the framework of the program of the central pharmacy, the central pharmacy received a large amount of drugs intended for the treatment of cancer patients.
“From November 1, 2022 to January 1, 2023, we received 62 cancer drugs, ” he said.
"The central pharmacy has met all the needs of hospital pharmacies across different states."
He added that the central pharmacy has all the material means to take care of all hospital requests in a timely manner.
The director of the central pharmacy pointed out that the problem of drug shortage is a global problem, due to the Asian manufacturers of the drug as well as problems related to supply, in addition to the closure witnessed by China during the COVID-19 crisis.
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There are multiple classes of medications currently in shortage, affecting various categories of drugs, including non-patented sterile injectable drugs, cancer chemotherapy drugs, emergency drugs, ADHD drugs, and popular drugs like Mounjaro.

China's national health insurance covers 45 rare disease medications, which treat 26 different rare diseases.

Title:

Content: Health · Life
Continue to do a good job in the prevention and control of rare diseases (people's opinion)
Shin Shaotetsu
December 05, 2022 07: 47 Source: People 's Daily - People' s Daily
Continue to strengthen research on rare diseases and ensure drug use, and further strengthen capacity building for the prevention and treatment of rare diseases
In 2022, the national medical insurance drug catalog will be adjusted, and a separate reporting channel will be opened for rare disease drugs, and rare disease drugs will be given priority in the medical insurance drug catalog.
So far, 45 drugs for rare diseases have been included in the national medical insurance drug catalog, covering 26 rare diseases.
The good news announced at the 2022 China Rare Disease Conference held recently has made many rare disease patients very happy.
General Secretary Xi Jinping pointed out in the report of the 20th National Party Congress: "To ensure the health of the people in the strategic position of giving priority to development."
Raising the level of treatment for rare diseases is related to the happiness of thousands of families.
Since the 18th National Congress of the Communist Party of China (CPC), the Party Central Committee and the State Council have attached great importance to the prevention and control of rare diseases, guiding relevant departments and parties to strengthen the supply of rare diseases research, diagnosis and treatment and drug research and development, and improving the medical security system for rare diseases.
The establishment of a rare disease catalogue, the establishment of a national network for rare disease diagnosis and treatment, and the establishment of the China rare disease alliance... a series of powerful measures have promoted the development of rare disease prevention and treatment, and brought hope to more patients.
Rare diseases are a challenging disease field and a major public health problem.
At present, there are more than 7,000 known rare diseases in the world, such as Gosher's disease, asymptotic freeze and albinism.
Because of the low incidence, variety, complex pathology, the difficulty of diagnosis and treatment of rare diseases, most of the diseases do not have effective treatment drugs.
Because of the high cost of research and development, some rare disease treatment drugs are expensive.
To solve the difficult problem of “difficult to diagnose, difficult to treat and expensive to treat ” rare diseases, the whole society needs to form a joint force to further improve the medical security system for rare diseases.
To prevent and control rare diseases, we must first grasp the prevention and control at the source, pay attention to prevention and early detection.
Of the known rare diseases, about 80% are inherited diseases caused by genetic mutations, and about half of them develop in childhood.
Strengthening prenatal screening and newborn genetic disease screening can achieve eugenics and early detection and early treatment of rare diseases, and reduce the long-term impact of rare diseases on patients and families.
In recent years, China has continuously increased medical and health investment and improved the birth defect prevention and treatment system.
There are more than 4,000 premarital health care institutions and 498 prenatal diagnostic institutions nationwide, providing a strong guarantee for the prevention and treatment of rare diseases.
There are few cases of rare diseases, involving blood, orthopedics, nerves, kidneys, respiratory, skin and severe diseases, and it is difficult to diagnose and treat, which is easy to cause misdiagnosis and missed diagnosis.
In 2019, the National Health and Health Commission selected 324 hospitals to set up a national rare disease diagnosis and treatment cooperation network, and established a two-way referral and remote consultation mechanism.
As the leading hospital, Beijing Union Hospital has established a national multi-disciplinary diagnosis and treatment platform for rare diseases, and the "one-stop treatment plan" has shortened the average diagnosis time of patients from the previous four years to less than four weeks, effectively improving the diagnosis and treatment efficiency.
With the continuous response of medical institutions at all levels, more high-level experts will join the diagnosis and treatment platform in the future, and the conditions for diagnosis and treatment of rare diseases will be further improved.
The problem of lack of medication for rare diseases has always been highlighted.
It is necessary to strengthen the guarantee of drug use for patients, increase the research and development of rare diseases drugs, and encourage universities, scientific research institutes, hospitals and pharmaceutical enterprises to participate in the research and development of rare diseases drugs through the establishment of rare diseases drug research and development funds, financial subsidies, tax incentives, priority review and approval, and other support measures.
A life-saving medicine has been produced, and patients have to be able to use it.
On the one hand, under the premise of ensuring the normal operation of the medical insurance fund, we will explore the inclusion of more rare diseases drugs in the medical insurance catalogue; on the other hand, for rare diseases drugs with large amounts, we can effectively reduce the price of drugs through drug negotiations.
At present, China has approved more than 60 rare disease drugs on the market, the national organization of rare disease drug negotiations average price reduction of more than 50%, rare disease patients access to medication is constantly improving.
On the road of building a healthy China, we must care for every group in difficulty and must not give up.
With the continuous advancement of China's rare disease medical security system, the right to life and health of rare disease patients will be better guaranteed.
Continue to strengthen the research and drug use of rare diseases, and further strengthen the capacity of rare diseases prevention and treatment, we will be able to better protect the health of the people and improve the health and well-being of the people.
People 's Daily (05 / 12 / 2022)
(Editor: Sun Hongli, Yang Di)
Related News

There are more than 7,000 known rare diseases globally.

Title:

Content: Health · Life
Let rare disease patients have a doctor, medicine, and protection
Li He
January 11, 2023 07: 51 Source: Science and Technology Daily
53%
In recent years, relevant departments have strongly supported the prevention and protection of rare diseases, and strengthened the supply of rare diseases research, diagnosis and treatment and drug research and development.
According to statistics, as of the end of November 2022, 89 drugs for the treatment of 45 rare diseases have been approved in China, and the number of rare diseases that can be treated in China accounts for 53% of the number of rare diseases that can be treated in the world.
On January 8 this year, the on-site negotiations on the national medical insurance drug catalog in 2022 were officially concluded.
Among them, 19 drugs for rare diseases, including Fabric's disease, Pompeii's disease, Gosher's disease, pulmonary hypertension and spinal muscular atrophy, set a new record.
Rare diseases are also called "orphan diseases".
According to the definition given in the "China Rare Disease Definition Research Report 2021", diseases with a neonatal incidence of less than one in 10,000, a prevalence of less than one in 10,000, and a number of diseases with a disease of less than 140,000, can be rare diseases.
Although the incidence of rare diseases is extremely low, but there are many kinds of diseases, the total number of patients is not a lot.
As of February 2022, there are more than 20 million rare disease patients in China, and more than 200,000 new patients are added every year.
Qiao Jie, an academician of the Chinese Academy of Engineering and executive vice president of Peking University, said that more than 7,000 rare diseases have been found in the world, about 80 percent of which are hereditary diseases and about 50 percent of which occur in childhood.
"Disease without medicine", "medicine without medicine" and "medicine without insurance" are common "crux" faced by patients with rare diseases.
Build a network of diagnosis and treatment, solve the problem of "no medical care"
Because rare diseases are rare and the number of patients with a single disease is very small, doctors, especially grass-roots hospitals, have insufficient ability to recognize and diagnose rare diseases, which restricts the improvement of rare diseases diagnosis and treatment ability.
The first step in the treatment of diseases is correct diagnosis, and difficult to diagnose is the first difficulty encountered by rare disease patients. In September 2021, a rare disease patient weighing only 18 kg was admitted to Beijing University of Aeronautics and Astronautics.
A Beijing doctor who happened to return to his hometown to visit his family suggested that he go to Peking University First Hospital for detailed investigation, so that sail, who is suffering from congenital muscular dystrophy, has an opportunity for early treatment.
According to the "2020 China Rare Disease Comprehensive Social Survey" released by the China Rare Disease Alliance, 15.5% of the more than 20,000 patients participating in the survey need to experience 1-4 years of diagnosis, and 5% of patients need to experience 5-20 years of diagnosis, with an average diagnosis time of 4.26 years.
Of these, 42% also experienced a misdiagnosis.
In order to improve the diagnosis and treatment of rare diseases, in 2018, the five departments of the National Health and Health Commission, the Ministry of Science and Technology, and the Ministry of Industry and Information Technology jointly issued the "First Catalogue of Rare Diseases". 121 diseases were included in the list of rare diseases. In October 2019, China launched the registration of rare disease diagnosis and treatment information. In February 2020, the office of the national rare disease diagnosis and treatment network was officially established.
The implementation of a series of policies has made the diagnosis and treatment of rare diseases in China continue to improve.
Zhang Liyang, president of Beijing Union Hospital and deputy director of the office of the National Rare Disease Diagnosis and Treatment Network, said that as the national leading hospital of the National Rare Disease Diagnosis and Treatment Network, in 2018 Beijing Union Hospital set up a multi-disciplinary consultation platform for rare diseases, which has registered 93 rare diseases in the National Rare Disease Direct Reporting System, involving more than 60,000 cases.
With the support of all parties, Beijing Union Hospital has taken the lead in carrying out many training sessions in many parts of the country, involving more than 80 rare diseases and covering more than 50,000 doctors.
Strengthen drug research and development and get rid of the dilemma of "medicine without medicine"
Due to the small market demand, difficult research and development, high cost and long cycle, there are not many pharmaceutical companies involved in the R & D and production of rare disease drugs, which leads to less rare disease drugs, known as "orphan drugs".
The data show that of the more than 7,000 rare diseases currently known, there are no more than 400 corresponding treatment drugs.
Strengthening the research and development of rare diseases is an important part of helping the treatment of rare diseases.
Domestic pharmaceutical companies are already working in this area.
Beihai Kangcheng, Kantini Pharmaceutical, Deyi Sunshine Bio, Shufang Medicine, Luang Yu Group, Faith Pharmaceutical Technology, etc. have invested huge funds and energy in the field of rare diseases drugs.
Beihaikang, for example, has received an exclusive global license from the Massachusetts State University School of Medicine to develop, produce and commercialize a new second-generation gene therapy for spinal muscular atrophy.
Huang Guo, deputy director of the State Drug Administration, said that we need to continue to promote rare disease drug research and development innovation in the future, and encourage foreign innovative drugs to synchronously research and development, clinical and synchronous declaration in China, and strive to synchronize the listing, so that rare diseases patients in China can use drugs faster and use good drugs.
In recent years, relevant departments have strongly supported the prevention and protection of rare diseases, and strengthened the supply of rare diseases research, diagnosis and treatment and drug research and development.
According to statistics, as of the end of November 2022, 89 drugs for the treatment of 45 rare diseases have been approved in China, and the number of rare diseases that can be treated in China accounts for 53% of the number of rare diseases that can be treated in the world.
The introduction of multiple guarantees to reduce the worry of "drug no guarantee"
"Although the incidence of rare diseases is extremely low, the cost of medical treatment is very high, and the annual cost of medical treatment for rare diseases can reach tens of millions of yuan," said Shan Xiaoou, a member of the Rare Disease Group of the Chinese Medical Association.
In addition, medical insurance reimbursement is difficult, and many drugs for rare diseases with extremely high prices are not included in the list of basic medical insurance drugs.
Most of the medicines cannot be reimbursed by the basic medical insurance and the major diseases insurance fund, and they can only pay for themselves.
In order to enable more rare disease patients to afford drugs, the National Basic Medical Insurance, Industrial Injury Insurance and Maternity Insurance Drug Catalogue (2021) has included 58 rare disease drugs, accounting for about 67% of the listed rare disease drugs.
For example, Nocina sodium injection, which used to be 700,000 yuan per needle, was included in medical insurance after medical insurance negotiations with more than 30,000 yuan, and children with spinal muscular atrophy became "lucky children".
Various localities have also actively explored the mechanism of drug protection.
More than 10 provinces and cities across the country have set up drug protection mechanisms involving high-value drugs for rare diseases, including special funds, major medical insurance, financial contributions, medical assistance, and policy-oriented commercial insurance.
In many places, it is not just a single system guarantee, but by the government, the market and society to provide multiple guarantees, supplementing the national basic medical insurance, and realizing the "access to medication" of rare disease patients who need high-value drug treatment.
For example, Zhejiang is the first province to introduce a provincial medical guarantee mechanism for rare diseases. In 2015, according to the economic and social development level of Zhejiang Province, the balance of medical insurance fund and the diagnosis and treatment of rare diseases.
In terms of commercial supplementary medical insurance, the "West Lake Benefit Joint Insurance" has set up special medical insurance for three rare diseases such as spinal muscular atrophy.
The medical insurance will be paid at a rate of 60 percent after deducting the initial payment line of 10,000 yuan for the year, and the maximum payment limit for the year will be 100,000 yuan.
Related Links
Rare diseases must be prevented.
"There are many kinds of birth defects, there are more than 8,000 kinds, a considerable proportion of which are rare diseases." Song Li, director of the Department of Maternal and Child Health of the National Health and Health Commission, said that the number of pre-screening institutions in China has reached more than 4,800, prenatal diagnostic institutions reached 498, and newborn genetic and metabolic disease screening institutions have been popularized in many provinces and cities.
Song Li pointed out that rare diseases should be prevented and controlled from the source.
China has adopted three levels of prevention and control measures to prevent birth defects, and has moved forward through marriage, childbirth and newborn screening, so as to ensure early detection, early intervention and early treatment, and reduce the incidence of rare diseases.
"In the case that more than 90% of rare diseases are not solved, prevention is the most cost-effective health strategy," Yu Xuejun, deputy director of the National Health Commission, said.
(Editor: Sun Hongli, Yang Di)
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Taiwan is experiencing a shortage of blood lipid-lowering drugs, but the government has stated that this will not cause immediate harm to national health due to the availability of generic alternatives with the same ingredients as Lipitor.

The government should invest in public education to combat the misconception that original brand drugs are superior to generic ones, thereby addressing a form of corruption in healthcare.

One challenge in the healthcare system is the public's limited trust in generic drugs, which can cause panic when original drugs are in short supply.

Generic drugs account for less than 30% of health insurance expenditures.

Blood lipid-lowering drugs, such as those with the same ingredients as Lipitor, have been affected by global shortages, but generic alternatives are available.

"The diabetes medications Ozempic and Mounjaro were affected by the shortage in the US."