This is not a question that simply uses "right or wrong" to judge right from wrong, but a complicated essay question: "How to make special medicines affordable for patients with rare diseases?"
Recently, the Second Affiliated Hospital of Xi’an Jiaotong University attracted criticism on the Internet for a 550,000 yuan hospital fee receipt.
According to the bill, a 1-year-old girl spent more than 550,000 yuan in hospital for 4 days. The most important expense is medicine, and the medical insurance can only reimburse it for 570 yuan.
The hospital responded that the treatment is scientific and there are no sky-high charges. This kind of special medicine is so expensive and is not in the medical insurance catalog.
The family members said that the medication was given informed consent and the hospital did not overcharge, thanking the hospital for saving the child's life.
I don’t know who posted the charge receipts online, and also used the title "shocked", which can easily lead to misleading hospital charges and inadequate medical insurance.
But the matter itself is easy to clarify. The hospital did not charge and prescribe drugs indiscriminately, and there were good reasons for not reimbursing the medical insurance.
This is not a question that simply uses "right or wrong" to judge right from wrong, but a complicated essay question: "How to make special medicines affordable for patients with rare diseases?"
Why are rare diseases expensive?
Simply put, if there are no pharmaceutical companies that continue to invest in research and development, there will be no specific drugs.
The cost of researchable drugs is too high, the population of drugs is small, the market share is small, the cost cannot be shared, and there may even be a situation where there is no market.
In the controversial event, the child was diagnosed with spinal muscular atrophy (SMA), a rare genetic disease.
Nosinagen Sodium is the only specific medicine. It was introduced to China in 2019 and priced at US$125,000 per injection in the United States. RMB 550,000 per injection is already a reduced cost.
How can the general family bear the cost of such treatment?
Netizens' sensitivity to high-priced drugs is not only a sympathy for the families of the children, but also a worry about their inability to resist risks.
Incurable diseases are personal misfortunes, while poverty caused by illnesses are family misfortunes and social misfortunes.
The discussion of netizens is nothing more than the expectation of curing the disease and relying on it.
So, is it all right to put drugs for rare diseases in the medical insurance list?
It's not that simple.
First, the role of medical insurance is mainly to "guarantee basics", limited by the level of economic development and the support capacity of medical insurance, some are very expensive and use rare disease treatment drugs with a small population, which are temporarily unable to be included.
The second is that even with medical insurance, there is a problem of balance of funds.
For example, drugs for the rare disease Gaucher disease have been included in the medical insurance, but at the county-level medical insurance level, the cost of medicines and treatment for a Gaucher disease patient may spend all the county's medical expenses.
The third is that once the medicine enters the medical insurance, it means that the patient can no longer get assistance and donation of medicine through the charity project.
And if the hospital channel is not smooth, it will force the patient into a dilemma.
The discussion of medical insurance funds will lead to another level of thinking, that is, how to use medical insurance funds to avoid some patients eagerly waiting for life-saving drugs and other patients are hoarding a bunch of useless medical insurance money. The medicine.
It is unrealistic to pin all hopes for the treatment of rare diseases on medical insurance.
Fortunately, in recent years, different provinces and cities have made their own attempts, such as the medical aid in Foshan, Guangdong, the special fund in Zhejiang, and in some places, some rare disease drugs are included in commercial universal insurance.
In other words, let medical insurance support, government special funds, market commercial insurance, social charity assistance and other levels to work together to help patients' families tide over the difficulties.
Just as the ice bucket challenge taught people about gradual freezing, this discussion also taught people about spinal muscular atrophy.
According to experts, this genetic disease can be prevented in advance through early screening.
If there are more popular sciences on rare diseases, it may be possible to reduce the risk of illness from the source, which would be a comfort.
Chengdu Commercial Daily-Red Star News Special Commentator Ma Qing