Medicine can now slow Alzheimer’s disease, but whether patients benefit depends on where they live. In Rome, experts from 12 countries signed a policy paper urging Brussels to give dementia its own framework, modelled on the €4 billion Beating Cancer Plan.
In Austria, more than a hundred people with early Alzheimer’s disease are receiving the new anti-amyloid therapies, reimbursed by the state and available in eight of nine federal states. In Spain, reimbursement has been refused outright. In Germany, patients on treatment today may lose access within months. And in Hungary, just one in a hundred ever receives the biological diagnosis the new drugs require.
For the first time, medicine can alter the course of Alzheimer’s disease rather than merely ease its symptoms. But whether Europeans benefit increasingly depends on where they live.
That was the conclusion of MindShift, a 12-country policy dialogue in Rome on 9-10 June, backed by eight pharmaceutical and diagnostics companies.
Diagnosed too late, if at all
The stakes are growing fast. Around nine million people live with dementia in the EU, a figure expected to rise by 58% to 14.3 million by 2050. Yet over half of cases are never formally diagnosed, and those who are diagnosed wait three to three and a half years on average, Alzheimer Europe research director Angela Bradshaw told the meeting.
The science, by contrast, has raced ahead: “A blood test for Alzheimer’s disease is no longer an abstract concept. It’s a clinical reality,” she said.
Others urge caution. Michael Schöll, professor of molecular medicine at the University of Gothenburg, warned that no agreed framework yet governs blood markers, and that their adoption “should proceed in a scientifically rigorous and measured manner.”
What innovation-ready looks like
Austria’s head start was not an accident of wealth. Gerhard Ransmayr, a specialist in neurology and psychiatry in Innsbruck, traced it to the Austrian Alzheimer Society, which surveyed the system, mapped the bottlenecks, nurses, infusion space, amyloid screening, MRI, care pathways, and lobbied clinicians, administrators and politicians. The result, he said: “The treatment is now available in eight of Austria’s nine federal states, each with at least one memory clinic,” with “more than 100 patients are receiving treatment across 11 centres,” reimbursed by the public system.
Even there, the gains are unevenly shared. Friederike de Maeyer, who chairs Austria’s dementia self-help association, asked: “Available to whom? Nearly 40% of Austrians live in rural areas.” And approval is not the same as care: “We are treating the disease and abandoning the person.”
A patchwork of closed doors
Where you live shapes not only whether you are treated, but whether you are even told what you have. In the Czech Republic, getting a specific Alzheimer’s diagnosis rather than a vague “dementia” label is “to a great extent a matter of zip code,” said Miluše Margarjanová of the Czech Alzheimer Society: among those tested, the share correctly diagnosed runs from 52% to 73% by region.
Further up the chain, reimbursement is the wall. Spain’s refusal leaves patients paying privately or going without. “We are closing the door to innovation,” said Jesús Rodrigo Ramos of the Spanish Confederation of Alzheimer’s. Germany reimburses only until pricing talks conclude, which could cut off patients mid-treatment. For Charité neurologist Peter Körtvélyessy, the delay is measured in failed patients: “I saw them getting worse and worse, and then they got too bad. I said, sorry, now it’s approved,” he recalled; for them, approval came too late.
Sweden, home to much of the science behind the diagnostics, has refused reimbursement; it has “the competence in the special clinics. We just lack the capacity,” said Moa Wibom of Ängelholm Hospital. Hungary marks the steepest gradient: dementia “is not on the list of prioritised diseases,” there is no national plan, and “only 1% of them receive biological diagnosis,” said András Horváth of the Gyula Nyiro Hospital of Budapest, on the country’s quarter-million patients.
Planning, not pity
The common thread is foresight, not funding.
Germany spends more on health than anyone in the room, 11.8% of GDP, yet has no national dementia plan; Hungary spends the least and has none either. “Readiness cannot be improvised,” states the policy paper endorsed in Rome, which notes that several participating countries still lack a funded national plan.
Horváth set out the sequence Hungary needs: a dedicated working group inside the health ministry, then “a national reference laboratory” with agreed thresholds, then a tiered system linking a centre of excellence to secondary and primary care. “The capacity to establish such a system is already within reach,” he said. “We are, in many respects, operating at the forefront of this transformation.”
In Italy, the host country, the clinic network and a dedicated Alzheimer’s fund already exist. On the mission’s second day, delegates visited Policlinico Tor Vergata, whose dementia-centre head, Alessandro Martorana, warned that the specialist-hub model cannot scale: “in the long term, hubs might fail because it’s too expensive”, leaving big-city patients advantaged and rural and southern ones shut out. “Time is brain,” argued Marco Bozzali of the dementia association SINdem.
The next cancer plan?
In a video message, EU health commissioner Olivér Várhelyi pledged, “You can count on the support of the European Commission,” pointing to an EU joint action on dementia across 17 countries and a new European Partnership on Brain Health. The policy paper asks for more: a dedicated European framework modelled on the €4 billion Beating Cancer Plan.
The argument is economic as much as moral. Dementia costs the world over $1.3 trillion a year, a figure the WHO expects to reach $2.8 trillion by 2030, and families shoulder most of it.
Many patients are told nothing at diagnosis, noted Petra Tegman of Sweden’s dementia association: “I don’t think the equivalent number for oncology would even be 1 per cent.” “Europe cannot manage tomorrow’s Alzheimer’s burden with yesterday’s pathways,” the paper concludes; “the time for incremental adjustment has passed.”
[BM]
Source:
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