According to the National Health Insurance Administration, in the adjustment of the medical insurance catalog in December this year, the rare disease SMA** drug nusinersen sodium injection (Spinraza) was included in the adjustment, which will be officially implemented on January 1 next year.
Spinraza was first approved by the US FDA in 2016 and is the "world's first" SMA drug. At the beginning of its introduction, it was priced at 12 in the United States50,000 US dollars (equivalent to RMB 860,000), 2 years ago after the domestic market after the price of 700,000 needles. This time the medical insurance was included, and related topics rushed to the hot search: how much has it dropped?What is the way forward?Behind the sky-high prices, who is doing the trouble?
01:700,000 down to 30,000?Industry: Diving price
SMA, which stands for spinal muscular atrophy, is an inherited neurodegenerative disease and a brother disease of "ALS".Caused by a defect in the gene encoded, it usually occurs in infants and young children. Its incidence is as high as 1 in 10,000, and it is also known as the "most common rare disease". Spinraza is recognized as the cheapest and most effective method in the industry, and it is injected 3 times a year to block the course of the disease.
There are 1,200 new cases of SMA patients in China every year, and there are more than 30,000 of them. Spinraza has been approved for marketing in China, so that tens of millions of patients finally see a glimmer of hope. However, more than 2 million a year cannot be exchanged for a lifetime success, and a normal and long-term life cannot be guaranteed.
Life is priceless, but for rare diseases, a penny is an opportunity. "Xiaoxiang News" once reported a similar dilemma, Doudou (pseudonym), who was just 10 days old in Lipu County, Hunan, was diagnosed with SMA-I type, and the doctor said that "he will not live to be 2 years old". Lifetime medicationIt costs more than 1 million per year——Far beyond the ability of ordinary families to bear.
Until this medical insurance negotiation, after a total of 2 rounds of 9 price cuts, it was difficult to reduce from 700,000 yuan to 30,000 yuan (the specific amount has not been disclosed), and finally the patient only needs to pay 100,000 yuan a year. Industry evaluation: It can no longer be called "diving price", but "diving price".
The cruelty of rare diseases lies in the fact that they silently erase people's hopes for life and health, and leave a glimmer of life hanging under high prices, and it seems that only the owner of wealth can grasp the initiative in life.
02: A glimmer of light: more people get the opportunity to "check in early".
For patients, the price reduction of Spinraza is certainly worth looking forward to, but it may be more practical to find an affordable alternative and.
Early genetic screening eliminates risk.
At present, scientists know that the only substitute known to be Novartis is Zolgensma, which is 14 million per shot. Fortunately, with the progress of domestic scientific research and technology, more refined cell, telomere and other genetic testing technologies have been continuously improved, and the price is less than 10,000 yuan at a timeLet more people get the opportunity to "check in early".
Can you imagine driving without a dashboard?That's crazy," said David Sinclair, a professor of genetics at Harvard. He has had many genetic tests on himself in order to intervene with some means, and he is now in his 50s and is only in his early 30s. Timepie, a domestic biotechnology company, has also launched a similar service - "Time Ruler".It detects interventions from 5 dimensions, including metabolism, cellular, and phenotype, which aims to understand genetic risks such as chromosomes and DNA in advance.
Check the details on its official website and find that the "Time Ruler" testing service first obtains a physical report through venous blood testing, and then equips it with a nutrition program, including hyperbaric oxygen, cryocyst and other equipment interventions. "The whole report is 30 pages long, which is enough to understand everything you want to know. The customer service revealed when making an appointment on the official website.
The data shows that asThe most advanced health risk detection technology in ChinaThe "Time Ruler" includes nearly 200 items of data, and its TRF international gold standard scheme has more than 60,000 samples.
However, for a long time, this kind of biodetection technology was difficult to obtain due to the high cost of research and development and technical difficulty, and the threshold was extremely high (40,000 to 360,000), and only a very small number of wealthy people could afford to obtain it. Nowadays, China's biotech enterprises have been deeply cultivating and benefiting the public for many years, and the official website shows that it has been iterated to "Time Ruler 3."0", the number of appointments has been scheduled until the next year.
03: More life science and technology achievements "fly into the homes of ordinary people".
Every small group should not be abandoned. This sentence was repeatedly emphasized at the negotiation site of the Health Insurance Bureau. We always like to say that life is priceless, but unfortunately, when there are means to save lives, we still have to weigh how much it will cost.
In the movie "The Wandering Earth 3", Andy Lau's father hopes to use digital life to "resurrect" his vegetative daughter Yaya, but although the resurrection is successful, his life is only 2 minutes. Yuval Harari also said in A Brief History of Mankind: "It would be unfair to those who cannot accept miracles if the progress of science in disease, anti-aging and regeneration benefits only the rich." ”
The inclusion of nusinersen sodium in medical insurance and the popularization of cutting-edge life detection technology "time ruler" are all a microcosm of the continuous "popularization of science and technology". Although the process is not easy, I believe that in the future, there will be more such life science and technology achievements "flying into the homes of ordinary people", so that the light of future science and technology can illuminate more lives.