Recently, a self-published media ? The drug request? The news has attracted a lot of attention. According to the article, the Hunan baby, who just turned one this year, is suffering from the rare disease ? Spinal Muscular Atrophy (SMA)? , urgently in need of effective drugs, but to pay ?700,000 yuan a ? of medicine, while the drug costs ?41 dollars? in Australia.
But according to published reports, the drug that matches the condition? Nocinazene sodium injection? has a price tag of $125,000 for a single dose. The drug requires five to six injections in the first year.
What can be done to improve access to expensive rare disease drugs? What payment model would be more acceptable?
A single dose of sodium nociceptin injection carries a $125,000 price tag. The drug requires five to six injections in the first year, which will cost $625,000 to $750,000, and three more injections per year thereafter, which will cost about $375,000. Patients may need injections of sodium nocinazene for the rest of their lives.
And domestic prices are far less than that pricing.? Domestically, there is a ?PAP patient assistance program? for SMA patients. Under this assistance program, patients are required to take 4 loading doses of sodium nocinazene injections over the first 2 months, in the form of buy 1 injection and get 3 free; after that, they have to take 1 injection every 4 months, in the form of buy 1 injection and get 1 free.
There are seven models of local coverage for rare diseases,? including special funds, negotiation of major diseases, financial contributions, policy-based commercial insurance, medical assistance, sporadic additions to health insurance and self-declaration.?
Rare disease medicines must be incorporated into medical insurance as soon as possible. Patients' individual rights are equal to those of other citizens, and the country's medical insurance should cover as much as possible of patients' treatment costs.?
In order to increase the accessibility of drugs for rare diseases to patients, governments around the world have mostly negotiated with drug companies to lower drug prices.
In terms of cost coverage, the Zhejiang Provincial Health Insurance Bureau stipulates that patients with rare diseases pay for the individual out-of-pocket portion of their visits to designated treatment hospitals, while other costs are settled directly between the health insurance agency and the designated treatment hospitals. Rare disease medicines are not included in the total budget management of the designated treatment hospitals and the scope of the assessment of the proportion of drugs.