Fundraiser Set up for Another Toddler to Receive World’s Most Expensive Medicine
Fanni Kaszás 2019.10.31.
The family of Levente, another little boy who is suffering from SMA (spinal muscular atrophy) have started fundraising for the boy’s 700 million HUF treatment, to receive the most expensive medicine in the world, which could save the toddler. The fundraising started last week and as of today, nearly 60% of the amount, almost 450 million HUF has been collected.
Levente was diagnosed with SMA-2 at six months old. The family from Enying began the fundraising having seen a whole country donate for another boy’s, Zente’s, medicine, and helping him receive the necessary treatment and live a full life. The amount had been collected for Zente in one week, and the boy received the treatment yesterday. Levente’s family is hoping the miracle could happen once more, this time for their child.
A foundation has been set up for collecting donations and there is also a Facebook page for the boy. There have also been numerous charity events, such as cake fairs, the proceeds of which will be used to procure the medicine for Levente.
For the time being, more than half of the amount, 495,143,835 HUF, 70,962 Euros, and 13,074 British pounds have been collected. However, the family and Levente are competing with time: the boy is currently 22 months old and will be 2 years old on December 20th, which means they have approximately a week to collect the full amount and start the process, as children are only allowed to receive the drug before reaching the age of two.
Levente has already received a medicine called Spinraza, financed completely by the National Health Insurance Fund (NEAK). The vaccine was patented just last year. This treatment is not cheap either, as an injection costs 23 million HUF, but the cost is entirely borne by NEAK. However, this medicine is needed by patients for the rest of their lives.
The expensive medicine called Zolgensma, that may cure the boy, is currently the most expensive medicine in the world and it has only been on the market since May. The essence of the treatment is that the patients are given a virus by gene therapy that “infects” and replaces the gene pool of defective or missing motor neurons, thus preventing muscular atrophy. In Hungary, another treatment may have given hope to SMA patients as of last year, but for the time being, it is only funded on a case-by-case basis, exclusively for children.