Have you released one from the media recently? Ask for medicine? This news has attracted a lot of attention. According to the article, Hunan babies who just turned 1 this year suffer from rare diseases? Spinal muscular atrophy (SMA)? You need a specific medicine urgently, but you have to pay? 700 thousand each What's the price of this medicine in Australia? 4 1 USD? .

But according to public reports, drugs that meet this condition? Noxinasen sodium injection? The price tag of one dose is $654.38+$250,000. This drug needs five or six injections in the first year.

How to improve the accessibility of rare diseases and expensive drugs? What kind of payment method is more acceptable?

The price of a dose of Nosey sodium injection is $654.38 +0.25 million. The drug requires five to six injections in the first year and costs $625,000 to $750,000. After that, three doses must be injected every year at a cost of about $375,000. Patients may need to be injected with Nocici sodium for life.

Domestic prices are far below the above pricing. ? What are the treatments for SMA patients in China? PAP patient assistance program? . Under this aid project, patients need to inject Nocici sodium injection four times in the first two months, in the form of buying 1 needle and giving away 3 needles; After that, 1 needle should be given every 4 months in the form of buying 1 needle and giving 1 needle.

There are seven modes of local protection for rare diseases. Including special funds, serious illness negotiation, financial contribution, policy commercial insurance, medical assistance, sporadic medical insurance supplement and independent declaration. ?

Drugs for rare diseases must be included in medical insurance as soon as possible. The individual rights of patients are equal to those of other citizens, and the national medical insurance should bear the treatment expenses of patients as much as possible. ?

In order to increase the accessibility of drugs for rare diseases to patients, local governments negotiated with pharmaceutical companies to reduce drug prices.

In terms of cost guarantee, Zhejiang Medical Insurance Bureau stipulates that patients with rare diseases should pay their own expenses when they visit designated treatment hospitals, and other expenses should be directly settled by medical insurance agencies and designated treatment hospitals. Drugs for rare diseases are not included in the total medical insurance budget management and the proportion of drugs in designated treatment hospitals.