Parents of a baby who has a rare and potentially fatal genetic disorder have managed to raise 1.9 million EUR from almost a million SMS donations in just over 24 hours so they can buy her the world’s most expensive drug.
Pia, who is nine months old, has spinal muscular atrophy type 1 (SMA) and would only need one injection of the drug called Zolgensm, but it a costs 1.9 million EUR (1.68 million GBP). It is not covered by healthcare in Belgium, not approved for use in the European Union, and is only available in the United States.
Pia’s parents, Ellen and Tim Meyer, along with family and friends, launched TeamPia to save her after she was diagnosed in May this year at just four months old (Pia was born on 27th November 2018).
Ellen told Central European News (CEN) that after the diagnosis in May, they asked the government and drug-maker Novartis for help, but did not receive any. In light of the successful fundraising campaign this week, she told CEN: “I don’t understand why Novartis don’t call us. We are waiting for a gesture from them. If they waived their fee, we could use the money to help other children. The more money we can raise to help other children, the better.
She added: “All our governments around the world have to work together to negotiate with pharmaceutical companies so they set prices before drugs are developed.”
Talking about the viral wave of donations, TeamPia member and family friend Annalies told CEN: “This is really great for Pia and it is also great because it can open up the debate about funding healthcare drugs to help more children in Belgium and around the world.”
She added that on Friday, they had launched a 2-EUR (1.77-GBP) text message donation campaign and it went viral on Monday morning, they have received over 972,000 text messages as of today (Thur).
Ellen said that on Monday morning, they had received 20,000 messages but by Tuesday night, this had ballooned to 900,000, a “truly incredible result”.
They needed 950,000 messages to raise the funds and are now in talks with telecoms companies to ensure they waive their fees, so they have enough money for the treatment. Annalies told CEN that so far, telecom companies Proximus, Telenet and Mobilevikings, had agreed to waive their fees. Ellen told CEN that Orange and Base had too, but that so far they had only received written confirmation from Proximus.
Ellen, who works at a notary’s office, said that it would have taken a month to set up a fee-free donation system with the phone operators, so they opted to go ahead with a fee-paying system that was faster to set up.
She told CEN that after the campaign went viral on Monday, people on social media and in the media called on phone operators to waive their charges, with many of them agreeing to do so in public statements.
While the BBC have reported that “Almost 1m Belgians pay for life-saving drug”, this is not exactly clear, as Annalies said: “It is unclear how many people exactly have donated at the moment because some people donated more than once.
“We very much still welcome donations from abroad because we don’t know what the final amount will be and if it will be enough.”
Ellen confirmed this, saying the number was probably close, but an exact figure “is currently impossible to say.”
Baby Pia needs the world’s most expensive drug, Zolgensma, from Swiss pharmaceutical giant Novartis. It is the only medication that can save her life and which has so far been successfully used on over a dozen children in the US.
Mum Ellen, who is from Wilrijk, a municipality in the Belgian province of Antwerp, told local media: “It will take 40 days for the money to arrive in the account, and then we can book our flight.” She added that if they went to America, they would probably go to a specialised hospital in Chicago.
After the viral wave of donations, Ellen told local media: “I cannot believe it. Thank you, thank you, thank you, thank you to everyone who has already sent an SMS or put money in the account. We have never had so much hope of saving Pia as we do now. There are no words for that.”
Because the medication is so pricey, TeamPia had to come up with a clever solution. That’s when the SMS idea came up. Ellen said: “If one in ten Belgians sends an SMS, our daughter will stay alive.”
With a population of 11.4 million, it does however seem the result could come close, and while it is currently too soon to call, they think that they will reach their target if the telecom companies waive their fees.
She said: “After all these failures, one after the other, the pharmaceutical companies and the government that are abandoning us […] I believe in humanity again today.”
Annalies told CEN that Pia is currently being treated with Spinraza (Nusinersen), which is approved in Europe but does not stop the disease’s progression. It only slows it down, and the damage done cannot be reversed, so time is of the essence for her to be given Zolgensma.
She explained that Zolgensma would give Pia the genes she is missing, stopping the progression of the disease in its tracks.
She said they had been organising events to raise funds, like selling wine and organising a concert, but that they were a lot of work, so when one team member had the SMS donation idea, “the team realised that it was a good idea as it wouldn’t require so much effort.”
Belgian Health Minister Maggie De Block is reported in local media as saying that while the drug was very expensive, negotiations over its cost would not happen until it had been approved in Europe.
Children affected by this disorder rarely get to celebrate their second birthday. Spinal muscular atrophy is a group of rare, inherited neuromuscular disorders.
Novartis explained the high cost of the treatment as “a one-off, transformative therapy for an extremely rare disease.”
They said in a statement on Tuesday: “We are aware of Pia and the efforts to facilitate her access to treatment.”
They also said: “We also recognize that patients and families around the world are interested in gaining access to treatment as quickly as possible.”
Donations can be made on GoFundMe here: https://www.gofundme.com/f/sqtbw-teampia
A bank transfer can also be made to account number BE05 3631 9038 5475 (BIC Code: BBRUBEBB).
Donations can also be made on the TeamPia website here: www.teampia.be
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