De Block announces international system to track high-cost drugs


Belgium and eight other countries have joined forces to anticipate costly medicines, such as Zolgensma made famous during the Baby Pia campaign

Costly cures

A system to anticipate the impact of high-cost medicines and help negotiate more affordable prices has been launched by Belgium in co-operation with eight other European countries. The announcement comes at a time of heightened public awareness of drug prices, thanks to the Baby Pia campaign.

The International Horizon Scanning Initiative involves Belgium, the Netherlands, Luxembourg, Ireland, Portugal, Sweden, Denmark, Switzerland and Norway. Through a central database, the participating countries will share information about new medicines and those under development.

Based on that data, policymakers will be able to identify future challenges and set priorities. The governments involved can also join forces to jointly negotiate lower drug prices.

Baby Pia

“Together we are going to monitor the drug horizon so that we know exactly which new treatments are coming our way,” explained federal health minister Maggie De Block. “Our goal is to provide the best treatment for the patient, in the best possible time frame, and at the best possible price.”

The issue is in the public eye in Belgium because of the Baby Pia campaign, which raised funds for an 11-month-old Antwerp girl (pictured above) suffering from spinal muscular atrophy. Her parents wanted her to be treated with Zolgensma, which at €1.9 million for the single treatment is one of the world’s most expensive medicines.

After an incredibly successful crowd-funding campaign, which raised that much and more, Pia received the treatment earlier this month.

As the government of a European country, you cannot decide on your own to pay for Zolgensma

- Maggie De Block

De Block had been criticised in the press for not doing enough to support the campaign, but argued that her role was to build a more equitable system rather than intervene for individuals.

She pointed out that a predecessor of the International Horizon Scanning Initiative, involving just Belgium and the Netherlands, made it possible to negotiate a lower price for Spinraza, the drug previously used to treat Pia’s condition. This has been available through the public health system since last year.

Zolgensma, however, is not yet licensed for use in Europe, and De Block was unwilling to undermine the approvals system and any future negotiations over price. “As the government of a European country, you cannot decide on your own to pay for Zolgensma,” she said in September.

Photo courtesy Team Pia