Gov’t to Support People Suffering from Rare Diseases after Rejecting Opposition Proposals
Fanni Kaszás 2019.11.28.
Gulyás Gergely, Minister of the Prime Minister’s Office announced at this week’s government briefing that the government will provide HUF 34 billion (EUR 101 million) additional funds for the health fund for 2019. Partly for pharmaceutical and medical aids, and for the care of patients with rare diseases.
Gulyás referred to, for example, children suffering from the rare disease, SMA (muscle atrophy), who recently made it to the headlines with the successful fundraising for their HUF 700 million treatment. From the HUF 34 million fund, the medical care and expensive treatment of those suffering from rare diseases could be supported.
The decision was announced by the PMO Chief after the Fidesz majority in the government recently voted down an opposition proposal once again, to create a fund to help those suffering from rare diseases, including SMA children.
In recent months, the issue of small children with SMA disease has come to the public’s attention as hundreds of millions of forints have been raised in the cases of Levente and Zente, who are both suffering from spinal muscular atrophy. The expensive gene therapy, which could probably improve the condition of SMA patients without the need to receive it on a monthly basis, is currently not funded by the Hungarian state.
The proposal, based on foreign examples, was first voted down in the committee as the representatives of Fidesz abstained. Later, Jobbik requested a proposal for a separate agenda. Although opposition parties voted for putting it on the agenda, Fidesz voted against the proposal. The opposition already tried to put the proposal in at the beginning of the year, but in the end, the ruling party prevented its discussion.
The main point of the proposal would be to create a financial fund to support SMA patients and those suffering from rare diseases. Lajos Rig of Jobbik, who prepared the proposal, said the media is most often talking about SMA in case of rare diseases, but 800,000 people suffer from other rare diseases in the country. The fund would mainly come from 1% of taxes and other donations from businesses and individuals, supplemented with government contributions, similar to the fund created after the red mud disaster.