Rare diseases are "not rare"!

Medical Network News, March 1st, the last day of February every year is "International Rare Disease Day"
.
Rare disease is a collective name for many diseases with extremely low prevalence, also known as "orphan disease"
.

Rare diseases are "not rare" in China.
The
World Health Organization defines rare diseases as: diseases in which the number of patients accounts for 0.
65‰ to 1‰ of the total population
.
At present, more than 7,000 rare diseases have been identified, and they are increasing at a rate of 250 to 280 per year
.
Because of the huge population base in China, the number of patients with rare diseases in China is not a small number-more than 20 million
.
Rare diseases are actually not "rare" in our country
.

　　China’s medical insurance catalogue contains more than 50 drugs for rare diseases.
For a
long time, patients with rare diseases have faced difficulties in diagnosis, treatment, and medication
.
At present, there are more than 50 rare disease drugs included in China's medical insurance catalogue
.
In May 2018, the National Health Commission announced the first batch of 121 rare diseases
.
In February 2019, the National Health Commission announced the establishment of a nationwide rare disease diagnosis and treatment collaboration network; starting from March 1, 2019, China will grant value-added tax concessions to 21 rare disease drugs and 4 APIs
.
In the past two years, a total of 16 categories have been admitted in the medical insurance catalog, covering a total of 9 rare disease indications, including Huntington’s disease, multiple sclerosis, idiopathic pulmonary fibrosis, and other rare disease treatment drugs have been included in the medical insurance Directory
.

　　Expert analysis:
How can the establishment of a diversified protection system make it possible for more patients with rare diseases to use drugs no longer "rare"? So that families of patients with rare diseases can afford to see a doctor? Can the rare disease diagnosis mechanism go faster? To get these answers, there is still a long way to go
.
At present, our country is working hard to reduce the burden of medical expenses for patients with rare diseases as much as possible through the triple guarantee mechanism of basic medical insurance, critical illness insurance and medical assistance
.
Wang Zongfan, Director of the Labor and Social Security Research and Medical Insurance Research Office of the Ministry of Human Resources and Social Security: First of all, at the level of government basic security, more rare disease drugs should be included in the catalog.
This can still be done
.
Last year, the state issued a document on deepening the reform of the medical system, specifically mentioning that beyond the government level, society and the market can still provide superimposed guarantees
.
In terms of commercial insurance and a multi-level medical security system, the power of the market is used to provide protection for rare diseases
.