A person living with sickle cell disease in Europe would need four passports to access the care that already exists.
France for the newborn screening extended to every newborn since 1 November 2024. Germany for the penicillin prophylaxis that reaches 95.6% of children under six when they are diagnosed early. Spain for the apheresis units in almost all hospitals, in every region. Italy for the gene-editing therapy the Italian Medicines Agency, AIFA, has reimbursed since September 2025 and was the first in the EU.
Each care runs today, inside the European Union and each runs in a different country.
The Hidden Struggle: Confronting Sickle Cell Disease Inequalities, a European barometer commissioned by Terumo Blood and Cell Technologies, measures seven systems against the same indicators.
It scores Belgium, France, Germany, Italy, the Netherlands, Portugal and Spain from 1 to 5 across five areas that decide how and when a patient receives treatment: access to treatment, workforce training, data and registries, newborn screening, and the coordination between government, clinicians and patient organisations.
One finding holds in all seven countries: despite examples of strong care, continuity of care is a challenge, and care often weakens after age 18.
German registry data put hydroxyurea uptake at 70% to 90% of eligible children, but adult use drops sharply after patients transfer out of paediatric care.
Transplantation remains largely a paediatric procedure in Belgium and Portugal, while automated red blood cell exchange in both countries stays inside a handful of hospitals.
Every one of the seven systems still works without a national standard for emergency care in a sickle cell crisis.
Yet in Italy, targeted staff education reduced the average wait for pain relief to 64 minutes versus 87 minutes before.
“For the many thousands of people living with sickle cell disease in Europe, the care they receive still depends on where they live and how old they are, rather than on what they need,” said Timea Rezi-Kato, Head of Government Affairs and Public Policy at Terumo Blood and Cell Technologies.
“Care holds firm until eighteen, and after that patients carry the system on their own shoulders. A child diagnosed at birth deserves the same standard as an adult living a few hundred kilometers away. The barometer names what already works and shows the route to carry it further.”
The question of how to screen for sickle cell disease, by contrast, has been answered more consistently.
Portugal screened roughly 100,000 babies in a pilot between May 2021 and December 2022, reviewed the results, and made the test universal in 2023, having found that 27% of Portuguese children with sickle cell disease previously learned their diagnosis while already in hospital with an acute complication.
Germany added the condition to the national panel in October 2021.
France switched to universal newborn screening on 1 November 2024 and runs it inside the existing neonatal panel, which is expected to bring coverage near 100%.
In Spain, all regions now provide universal newborn screening for hemoglobinopathies.
More than 99% of Dutch babies are tested using the heel prick method.
While in Belgium, sickle cell disease screening has been part of the Fédération Wallonie-Bruxelles programme since January 2023, implementation across maternity wards remains uneven, and coverage is almost entirely absent in Flanders.
Italy, on the other hand, still relies on regional pilots and voluntary screening.
“Europe doesn’t start this work with a blank page,” said Rezi-Kato.
“A diagnosis belongs in the maternity ward with the heel prick, rather than in an emergency department during a first crisis at three in the morning.”
The report lands while members of the European Parliament on its public health committee press the European Commission to legislate a binding European rare disease framework.
Every one of the seven countries addresses sickle cell disease without a dedicated national plan defining implementation measures for the condition, and all seven still lack a formal national platform that brings clinicians, patients, payers and officials around one table.
The barometer's recommendations stem directly from these findings.
It calls for an EU-wide rare disease action plan built on health equity, carrying a dedicated section on sickle cell diagnosis, treatment and care.
It calls for universal newborn screening across the 27 member states, with referral and follow-up attached to it.
It calls for an EU-wide registry aligned with the European Health Data Space and for funding to train healthcare providers through EU4Health, Digital Europe and Horizon Europe.
And it calls for open dialogue with ERN-EuroBloodNet, member states, healthcare professionals, patient organisations, research institutions and industry.
The invitation stands open to policymakers, clinicians, payers and patient communities alike.
Good care already exists within Europe's borders, and the task now is to put it within reach of every patient.
This publication marks a first step, with expert workshops set to begin early 2027.
