An emotional appeal is being promoted over social media for tiny Portuguese baby Matilde, born in April with a rare form of muscular atrophy for which there is no cure in Europe.
But there is one injection, available in the United States, that might make all the difference.
It works out at pretty much the most expensive medication in the world, at €1.9 million, but it is Matilde’s only chance of long-term survival.
“If everyone gave €1, the cost would easily be covered”, Manuel Luís Goucha told his television audience on TVI yesterday.
Goucha has already made a donation and appeals to others to give theirs.
The campaign, uploaded onto Facebook last week, is already being widely shared and donations are flooding in.
The account set up for Matilde’s treatment is: Matilde Sande: PT50 0035 0685 00008068 130 56. It has already received the support of national ‘personalities’, including writer Pedro Chagas Freitas.
Now it’s just a question of seeing whether Matilde will get her chance.
The little girl’s illness is Spinal Muscular Atrophy type 1 – the worst form of the disease.
The US patented drug Zolgensma is part of a new type of treatment known as gene therapies that replace a mutated gene with a healthy one.
It is a single-shot remedy – out of the reach of almost every candidate who needs it.
By coincidence, a debate on how drug companies come up with these ‘eye-popping price tags’ for new treatments was underway in the United States as Matilde’s story was being publicised in Portugal.
Said one participant – David Mitchell, president of the Patients for Affordable Drugs – “we are doing to have to do something. We cannot possibly pay whatever these drug companies demand..”
But now at least, there is no choice.
For further information on this appeal, see Facebook page: “Matilde, uma bebé especial”.