The world's most expensive drug is given in no way by chance

Many people worry that there will be frauds and really unfair to patients with spinal muscular atrophy when the drug worth VND 48.6 billion is distributed free of charge according to the type of sweepstakes.

Onasemnogene abeparvovec or Zolgensma is a drug licensed by the U.S. Food and Drug Administration (FDA) in 2019 for children under 2 years of age, for the treatment of spinal muscular dystrophy (SMA), a rare genetic disorder resulting in a child losing muscle control.

According to the Independent newspaper, it is also considered to be "only for the rich", or "the world's most expensive drug" because of its "heavenly" price: a therapeutic dose of 2.1 million USD (about 48, 6 billion).

Zolgensma medicine is produced and distributed by AveXis, a member of the Swiss multinational pharmaceutical company Novartis - (Photo: NOVARTIS).

Since being licensed in May 2019, the drug has been controversial in the medical community because of its expensive price, manufacturing process and side effects when injected into a vein.

Most recently, the pharmaceutical company Novartis continued to stir public opinion when it announced plans to set up a lottery system to provide the drug for free.

Accordingly, each year there will be 100 doses of onasemnogene abeparvovec given to children in countries around the world through global lottery drawing.

The decision, declared by Novartis "based on the recommendations of anonymous bioethics," has received countless criticisms from patient groups, relatives and health organizations. They think that there will be fraud here, "the lucky" is not necessarily "lucky".

Many activists think this program is like choosing lucky children. That makes patients suffer emotional burden if not winning, inferiority because they think that they are unlucky, do not deserve to be saved. Psychological consequences can make the condition worse.

These people believe that the AveXis company should find another solution to cure children's illnesses instead of finding ways to distribute drugs in a lucky lottery way.

In response to public concern, AveXis said the program was created to meet the growing demand for spinal muscular dystrophy for children living in countries outside the United States that eliminate This drug has not been licensed for treatment. And they have consulted with various health organizations and biomedical ethics groups.

If nothing changes, this lottery system will start booting on February 2, 2020.

Currently, there are only two drugs approved for spinal muscular dystrophy in the United States, Zolgensma and Spinraza. Spinraza must be periodically treated, costing about VND 17 billion for the first year and VND 8 billion each year thereafter, until the disease is over.