The UK has historically been a global leader in life sciences innovation, but
recent statistics paint a worrying picture for medicines access. The right
policy can start to reverse this.
We are living in a time where the intersection between breakthrough science,
technology and data insights has the potential to transform treatment options
for some of the toughest health conditions faced by patients in the UK.
The UK has long played a central role in driving innovation when it comes to
healthcare, and at Johnson & Johnson (J&J) we were pleased to see some positive
signs from the Government at the end of 2025, illustrating an intent to reverse
a decade of decline of investment in how the UK values innovative treatments.
It was a positive first step, but now the real work begins to enable us to
deliver the best possible outcomes for UK patients. To achieve this, our focus
must be on ensuring our health system is set up to match the pace and gain the
benefits of innovation that science provides. We need a supportive medicines
environment that fully fosters growth, because even the most pioneering drugs
and therapies are only valuable if they can be accessed by patients when they
need them most.
> even the most pioneering drugs and therapies are only valuable if they can be
> accessed by patients when they need them most.
At J&J, we are proud to have been part of the UK’s health innovation story for
more than a century. We believe that turning ambition into delivery requires a
clearer focus on the foundations that enable innovation to reach patients. We
have had a substantial and long-term economic presence, with our expertise
serving as the grounds for successful partnerships with patients, healthcare
providers, clinical researchers and the NHS.
Recent national developments are a step in the right direction
The UK Government’s recent announcements on the life sciences industry are an
important move to help address concerns around medicines access, innovation and
the UK’s international standing. This includes a welcome planned increase to the
baseline cost-effectiveness threshold (the first change to be made since its
introduction in the early 2000s).
While it is crucial to get this implemented properly, this seems like a step in
the right direction — providing a starting point towards meaningful policy
reform, industry partnership and progress for patients.
The true impact of stifling medicine innovation in the UK compared with our
peers
These positive developments come at a critical time, but they do not fix
everything.
Over the past decade, spending on branded medicines has fallen in real terms,
even as the NHS budget has grown by a third.[i] Years of cost-containment have
left the UK health system ill-prepared for the health challenges of today, with
short-term savings creating long-term consequences. Right now, access to
innovative medicines in the UK lags behind almost every major European
country[ii]; the UK ranks 16th and 18th among 19 comparable countries for
preventable and treatable causes of mortality.[iii]These are conditions for
which effective medicines already exist.
Even when new medicines are approved, access is often restricted. One year after
launch, usage of innovative treatments in England is just over half the average
of comparator countries such as France, Germany and Spain.[iv] The effect is
that people living with cancer, autoimmune conditions and rare diseases wait
longer to access therapies that are already transforming lives elsewhere in
Europe.
And even at its new level, the UK’s Voluntary Scheme for Branded Medicines
Pricing, Access and Growth (VPAG) clawback rate remains higher than in
comparable countries.[v] J&J is committed to working together to develop a new
pricing and access framework that is stable, predictable and internationally
competitive — enabling the UK to regain its position as a leading destination
for life sciences.
Seeing the value of health and medicines investment as a catalyst for prosperity
and growth
Timely access to the right treatment achieves two things; it keeps people
healthy and prevents disease worsening so they can participate in society and a
thriving economy. New research from the WifOR Institute, funded by J&J, shows
that countries that allocate more resources to health — especially when combined
with a skilled workforce and strong infrastructure — consistently achieve better
outcomes.[vi]
> Timely access to the right treatment achieves two things; it keeps people
> healthy and prevents disease worsening so they can participate in society and
> a thriving economy.
The UK Government’s recent recognition of the need for long-term change, setting
out plans to increase investment in new medicines from 0.3 percent of GDP to 0.6
percent over the next 10 years is positive. It signals a move towards seeing
health as one of our smartest long-term investments, underpinning the UK’s
international competitiveness by beginning to bring us nearer to the levels in
other major European countries.
This mindset shift is critical to getting medicines to patients, and the life
sciences ecosystem, including the pharmaceutical sector as a cornerstone, plays
a pivotal role. It operates as a virtuous cycle — driven by the generation,
production, investment in, access to and uptake of innovation. Exciting
scientific developments and evolving treatment pathways mean that we have an
opportunity to review the structures around medicines reimbursement to ensure
they remain sustainable, competitive and responsive. At J&J, we have the
knowledge and heritage to work hand-in-hand with the Government and all partners
to achieve this.
Together, we can realise the potential of medicine innovation in the UK
Patients have the right to expect that science and innovation will reach them
when they need it. Innovative treatments can be transformative for patients,
meaning an improved quality of life or more precious time with loved ones.
We fully support the Government’s ambitions for life sciences and the health of
the nation. Now is the moment to deliver meaningful change — the NHS, Government
and all system partners, including J&J, must look at what valuing innovation
actually means when it comes to modernising the frameworks and mechanisms that
support access and uptake. Practical ways to do this include:
* Establishing a new pricing and access framework that is stable, predictable
and internationally competitive.
* Evolving medicines appraisal methods and processes, to deliver on the
commitments of the UK-US Economic Prosperity Deal.
* Adapting thresholds and value frameworks to ensure they are fit for the
future — in the context of wider system pressures, including inflation, and
the evolution of medical innovation requiring new approaches to assessment
and access.
> the NHS, Government and all system partners, including J&J, must look at what
> valuing innovation actually means when it comes to modernising the frameworks
> and mechanisms that support access and uptake.
By truly recognising the value of health as an investment, rather than as a
cost, we can return the UK to a more competitive position. The direction of
travel is positive. At J&J, we stand ready to work in partnership to help ensure
the UK is once again the best place in the world to research, develop and access
medicines.
Follow Johnson & Johnson Innovative Medicine UK on LinkedIn for updates on our
business, our people and our community.
CP-562703 | January 2026
--------------------------------------------------------------------------------
[i] House of Commons Library (2026). ‘NHS Funding and Expenditure’ Research
Briefing. Available at:
https://commonslibrary.parliament.uk/research-briefings/sn00724/ (Accessed
January 2026).
[ii] IQVIA & EFPIA (2025). EFPIA Patients W.A.I.T Indicator 2024 Survey.
Available at:
https://efpia.eu/media/oeganukm/efpia-patients-wait-indicator-2024-final-110425.pdf.
(Accessed January 2026)
[iii] The Kings Fund (2022). ‘How does the NHS compare to the health care
systems of other countries?’ Available at:
https://www.kingsfund.org.uk/insight-and-analysis/reports/nhs-compare-health-care-systems-other-countries
(Accessed January 2026)
[iv] Office for Life Sciences (2024). Life sciences competitiveness indicators
2024: summary. Available at:
https://www.gov.uk/government/publications/life-sciences-sector-data-2024/life-sciences-competitiveness-indicators-2024-summary
(Accessed January 2026).
[v] ABPI. VPAG payment rate for newer medicines will be 14.5% in 2026. December
2025. Available at:
https://www.abpi.org.uk/media/news/2025/december/vpag-payment-rate-for-newer-medicines-will-be-145-in-2026/.
(Accessed January 2026).
[vi] WifOR Institute (2025). Healthy Returns: A Catalyst for Economic Growth and
Resilience. Available at:
https://www.wifor.com/en/download/healthy-returns-a-catalyst-for-economic-growth-and-resilience/?wpdmdl=360794&refresh=6942abe7a7f511765977063.
(Accessed January 2026).
Tag - Health systems
January 2026 I GB-73006
Disclaimer
POLITICAL ADVERTISEMENT
* This is sponsored content from AstraZeneca.
* The advertisement is linked to public policy debates on the future of
cardiovascular care in the UK.
* This content has been paid for and developed by AstraZeneca UK
Cardiovascular disease (CVD) has shaped the nation’s health for generations.
It remains a leading cause of death and a major driver of long-term sickness,
yet it is also one of the most preventable. Today, 8 million people in the
U.K. live with CVD, and early deaths from CVD in England have reached
a 14-year high.1,2 The reality is stark: without urgent action, one million more
could live with CVD by 2030 — and two million by 2040.1
Tackling CVD is not only a moral imperative, it’s an economic necessity. In the
U.K., 2.5 million working-age people are economically inactive due to long-term
sickness, and CVD contributes to long-term sickness at
unprecedented levels3 Each year, CVD costs the U.K. economy an estimated £24
billion, straining public finances, dampening productivity and
widening inequalities.4
In July 2023, AstraZeneca convened the CVD-risk coalition — with charities,
clinical organizations and patient groups — to shape a coordinated response to
these trends.
Today, the coalition has published Getting to the heart of the matter: A
national action plan for tackling cardiovascular disease5 — a blueprint for
decisive action and a call for the government and the NHS to confront CVD head
on. It has a clear message: the tools exist to tackle this challenge, but we
need leadership, investment, and a focus on prevention and early intervention to
unlock meaningful change.
> the tools exist to tackle this challenge, but we need leadership, investment,
> and a focus on prevention and early intervention to unlock meaningful change.
Diagnosis and prevention gaps we cannot afford
CVD often arises from detectable and treatable conditions: hypertension, high
cholesterol, diabetes, chronic kidney disease. Yet millions remain undiagnosed.
Six million people in the U.K. don’t know they have high blood pressure — a
silent driver of heart attacks, strokes and kidney disease.6,7
This systemic diagnosis gap is not the result of a lack of evidence or clinical
consensus; rather, the longstanding pressure on primary and community
care, fragmentation across services, and declining investment in public
health. Between 2015/16 and 2023/24, funding for key preventative
services — including smoking cessation and adult obesity support — fell sharply
in real terms.8
Additionally, secondary prevention remains patchy across England. Despite clear
treatment guidance from NICE, less than half of patients with CVD
meet recommended cholesterol levels. Almost 30 percent of hypertension patients
are not meeting recommended blood pressure targets or don’t have a recent blood
pressure measurement in their records.9
The consequences are clear: progress on CVD outcomes has stalled, premature
deaths are rising and those in England’s most deprived areas are four times more
likely to die prematurely from CVD than those in the least deprived.10
> progress on CVD outcomes has stalled, premature deaths are rising and those in
> England’s most deprived areas are four times more likely to die prematurely
> from CVD than those in the least deprived
We must place prevention at the heart of our health system.
A vision for proactive, personalized cardiovascular care
Early CVD prevention and treatment save lives and money. It benefits patients,
reduces NHS pressure and strengthens the UK’s economic resilience.
A 20 percent reduction in CVD incidence could save the NHS £1.1 billion annually
within five years and place 60-70,000 more people into work.11 Recent CVDACTION
modeling suggests that even modest near-term improvements in treatment could
prevent approximately 61,000 events of heart attack, stroke, heart failure
admission and end-stage kidney disease in three years.12
This is not theoretical. We know what integrated, proactive models can do.
Unlocking the power of data and digital tools
Platforms like CVDPREVENT and CVDACTION already demonstrate how data-driven
insights from GP records can flag undiagnosed or
undertreated patients — enabling clinicians to prioritize, optimize treatment
and thus prevent avoidable heart attacks and strokes every year.13,14
Additionally, as the NHS App becomes a digital ‘front door’, there is an
opportunity to deliver personalized risk information, lifestyle guidance and
seamless access to services.
But digital transformation requires investment in workforce capability,
interoperability between systems and national procurement frameworks that can
scale at pace.
Tom Keith Roach
A neighborhood approach to prevention
Joined-up neighborhood services — across community pharmacies, general practice,
specialist teams and local authorities — could identify risk earlier, manage
long-term conditions holistically and reduce avoidable admissions.
Community pharmacy hypertension screening has delivered over two million blood
pressure checks in a single year, identifying thousands previously unaware of
their risk.15
The LUCID program, developed as part of a joint working initiative between
AstraZeneca and University Hospitals Leicester, has shown that integrated care
across nephrology specialists and primary care can identify high-risk chronic
kidney disease patients and optimize their treatment, reducing emergency
admissions and long-term NHS costs.16
But to truly deliver change, resources must be rebalanced toward primary and
community care. Cardiovascular prevention cannot be driven from hospitals
alone. The neighborhood service must be properly resourced, with contracts and
incentives aligned to prevention and outcomes, not activity.
A whole-system effort to transform lives and the economy
The forthcoming Modern Service Framework for CVD, promised within the
Government’s 10 Year Health Plan, presents a critical opportunity. This
framework must:
* Embed prevention into every level of care
* Enable earlier diagnosis using digital and community-based tools
* Support optimal treatment through data and workforce innovation
* Define clear national priorities backed by accountability
CVD is a health challenge and a national prosperity challenge. We cannot afford
rising sickness, worsening inequalities, and an NHS stretched by late-stage,
preventable disease. The link between health and wealth has never been clearer:
investing in CVD prevention will deliver both immediate and long-term returns.
> The link between health and wealth has never been clearer: investing in CVD
> prevention will deliver both immediate and long-term returns.
The action plan published today provides a clear, evidence-based roadmap.5 It
calls for:
* National clinical and political leadership
* Ambitious targets, including a 20 percent reduction in incidence
* Investment in prevention and the expansion of Health Checks
* Improved uptake of effective treatments, guided by data
* Digital and diagnostic excellence across neighborhoods
* Partnership working at every level
A call to action
CVD has affected too many lives for too long. But progress is within reach. The
decisions we make today will determine whether the next decade is defined by a
widening crisis or a renewed national effort to prevent avoidable illness.
AstraZeneca stands ready to support the government, the NHS and partners to
deliver the change our country needs. The time to act is now.
Find out more at astrazeneca.co.uk
References
[1] British Heart Foundation. UK factsheet. January 2026. Available at:
https://www.bhf.org.uk/-/media/files/for-professionals/research/heart-statistics/bhf-cvd-statistics-uk-factsheet-jan26.pdf.Last
accessed: January 2026.
[2] British Medical Journal. Early deaths from cardiovascular disease reach 14
year high in England. British Medical Journal. January 2024. Available at:
https://www.bmj.com/content/384/bmj.q176. Last accessed: December 2025.
[3] Rising ill-health and economic inactivity because of long-term sickness, UK:
2019 to 2023. Office for National Statistics. Available at:
https://www.ons.gov.uk/employmentandlabourmarket/peoplenotinwork/economicinactivity/articles/risingillhealthandeconomicinactivitybecauseoflongtermsicknessuk/2019to2023.
Last accessed: December 2025.
[4] UK Government. UIN HL5942. March 2025. Available at:
https://questions-statements.parliament.uk/written-questions/detail/2025-03-18/hl5942.
Last accessed: December 2025.
[5] Getting to the heart of the matter. A national action plan for tackling
cardiovascular disease. AstraZeneca. 2025. Available at:
https://qr.short.az/r/Getting-to-the-heart-of-the-matter. Last accessed: January
2026.
[6] Blood Pressure UK. Why is know your numbers! needed?. Available at:
https://www.bloodpressureuk.org/know-your-numbers/why-is-know-your-numbers-needed/.
Last accessed: December 2025.
[7] Department of Health and Social Care. Get your blood pressure checked. March
2024. Available at:
https://www.gov.uk/government/news/get-your-blood-pressure-checked. Last
accessed: December 2025.
[8] The Health Foundation. Investing in the public health grant. February 2025.
Available at:
https://www.health.org.uk/reports-and-analysis/analysis/investing-in-the-public-health-grant.
Last Accessed January 2026.
[9] CVDPREVENT. CVDP Annual Audit Report 2025. March 2025. Available at:
https://static1.squarespace.com/static/65eafc36395e4d64e18a3232/t/6937fb8666a6d23761182c05/1765276550824/CVDPREVENT+Fifth+Annual+Report.pdf
Last Accessed: January 2026.
[10] Public Health England. Health matters: preventing cardiovascular disease.
February 2019. Available at:
https://www.gov.uk/government/publications/health-matters-preventing-cardiovascular-disease/health-matters-preventing-cardiovascular-disease.
Last accessed: December 2025.
[11] Tony Blair Institute for Global Change. The economic case for Protect
Britain, a preventative health care delivery programme. July 2024. Available at:
https://assets.ctfassets.net/75ila1cntaeh/7CcuI38C3mxgps6lC9O2iA/825bf2a41f933cf719459087c1599190/Tony_Blair_Institute_for_Global_Change__The_Economic_Case_for_Protect_Britain__July_2024.pdf
Last accessed January 2026
[12] Into-Action.Health. Powering the prevention shift – The CVDACTION impact
model. September 2025. Available at:
https://www.into-action.health/_files/ugd/ee4262_81e75612f13e403aab6594727b338771.pdf.
Last Accessed January 2026.
[13]Data & Improvement Tool. CVDPREVENT. Available at:
https://www.cvdprevent.nhs.uk/. Last accessed: December 2025.
[14] Transforming the prevention of CVD. CVDACTION. Health Innovation Network.
Available at:
https://thehealthinnovationnetwork.co.uk/case_studies/transforming-the-prevention-of-cvd/.
Last accessed: December 2025.
[15] NHS Business Services Authority. Dispensing contractors’ data. Available
at:
https://www.nhsbsa.nhs.uk/prescription-data/dispensing-data/dispensing-contractors-data
. Last Accessed January 2026
[16] AstraZeneca UK. Executive summary of Joint Working outputs. Pan Leicester
Integrated Chronic Kidney Disease (CKD) Transformation Project: a quality
improvement project to identify CKD patients in primary care suitable for
virtual management to improve patient outcomes. (LUCID). July 2024. Available
at:
https://www.astrazeneca.co.uk/content/dam/intelligentcontent/unbranded/astrazeneca/uk/en/pdf/work-with-nhs-uk/Executive_Summary_of_Joint_Working_Outputs_Pan_Leicester.pdf.
Last Accessed: January 2026
The German government rejected claims by U.S. Health Secretary Robert F. Kennedy
Jr. that Berlin prosecuted doctors and patients for refusing Covid-19
vaccinations or mask mandates.
“The statements made by the U.S. Secretary of Health are completely unfounded,
factually incorrect, and must be rejected,” German Health Minister Nina Warken
said in a statement late Saturday.
“I can happily explain this to him personally,” she said. “At no time during the
coronavirus pandemic was there any obligation for doctors to carry out vaccines
against Covid-19,” Warken added.
“Anyone who did not wish to offer vaccines for medical, ethical or personal
reasons were not criminally liable and did not have to fear penalties,” she
said.
Warken added that “criminal prosecution took place only in cases of fraud and
forgery of documents, such as the issuing of false vaccine certificates” or
exemption certificates for masks.
“Doctors [in Germany] decide independently and autonomously on the treatment of
patients,” the minister stressed, adding that “patients are also free to decide
which treatment they wish to receive.”
Kennedy said in a video post on Saturday that he had written to Warken after
receiving reports that Germany was restricting “people’s abilities to act on
their own convictions” in medical decisions.
He claimed that “more than a thousand German physicians and thousands of their
patients” faced prosecution for issuing exemptions from mask-wearing or Covid-19
vaccination requirements during the pandemic.
Kennedy did not provide specific examples or identify the reports he cited, but
he said Germany was “targeting physicians who put their patients first” and was
“punishing citizens for making their own medical choices.”
He accused Berlin of undermining the doctor–patient relationship and replacing
it with “a dangerous system that makes physicians enforcers of state policies.”
Former German Health Minister Karl Lauterbach also pushed back on the claims,
telling Kennedy on X to “take care of health problems in his own country.”
People who stop taking weight-loss drugs regain body mass four times faster than
those who lost their excess pounds through diet and exercise, according to an
analysis of the latest studies.
The additional benefits from taking weight-loss drugs, such as improvements in
cholesterol and blood pressure, were also reversed when patients quit the
medications, the study found.
The research, published in the British Medical Journal on Thursday, adds to a
growing body of evidence that suggests life-long treatment of obesity is needed
to maintain control of the condition. But the high cost of the latest drugs — as
well as their side effects — present barriers to long-term use.
“We know that obesity is a chronic relapsing condition. We know that when
treatment stops, weight is regained. And so, some kind of treatment needs to be
continued. What [that] treatment should be, I don’t know,” co-author Susan Jebb,
professor of diet and population health at the Nuffield Department of Primary
Care Health Sciences, University of Oxford, told journalists.
Rates of obesity and overweight are growing rapidly on the continent, with
around 51 percent of people in the EU aged 16 years or over being overweight in
2022. Obesity significantly increases the risk of chronic illnesses such as
diabetes, heart disease and cancers, and health systems are struggling to cope.
Researchers analyzed weight gain from 37 trials of multiple weight-loss drugs,
including older medications and the newer GLP-1s. The latest drugs, including
Novo Nordisk’s diabetes and weight-loss drugs Ozempic and Wegovy and Eli Lilly’s
Mounjaro, saw the greatest weight loss and the fastest weight regain when
treatment stopped.
Compared with another analysis of behavioral weight management programs
supporting low energy diets and exercise, weight regain was faster after ending
medication than after ending behavioral programs.
THE LONG-TERM DILEMMA
The newer weight-loss drugs have seen a boom in uptake across Europe and
America, despite their high prices. Ozempic, Wegovy and Mounjaro soared in
popularity after demonstrating roughly 15 percent weight loss in trials, and
were pounced on by celebrities and influencers.
However, around half of people who take these drugs will stop them after one
year. Side effects such as nausea and vomiting, costs or dissatisfaction with
weight loss as it plateaus are driving decisions to halt treatment, lead author
Sam West, a postdoctoral researcher also at the Nuffield department at the
University of Oxford, told journalists during the briefing.
Most people in the U.K. — around 90 percent — pay privately for their
weight-loss medication, Jebb said. But those who access it through the National
Health Service are subject to a two-year cap on access to the drugs, known as
GLP-1s. Similar limits apply in other EU countries.
Dimitris Koutoukidis, associate professor in diet, obesity and behavioral
sciences at the University of Oxford, suggested the U.K. may not be getting the
value for money it envisioned with these weight-loss drugs.
The model used to assess whether Lilly and Novo’s medicines were cost-effective
assumed people would regain their lost weight after two years, he told
journalists — but their study shows weight is regained at around 1.5 years.
“It is really hard to treat obesity and keep the weight off long-term,” Jebb
said.
“That should make us put even more effort into preventing weight gain in the
first place. And if we could transform our food environment to make it easier
for people to manage their weight it would stop them gaining weight in the first
place and help people — after a successful weight loss attempt — to keep it
off.”
“These treatments are not a whole solution,” she added.
President Donald Trump has told his health secretary, Robert F. Kennedy Jr., to
consider aligning the U.S. vaccination schedule with those in Europe, where many
countries recommend fewer vaccines.
Kennedy has taken up the charge with gusto and is considering advising parents
to follow Denmark’s childhood schedule rather than America’s.
Many who specialize in vaccination and public health say that would be a
mistake. While wealthy European countries do health care comparatively well,
they say, there are lots of reasons Americans are recommended more shots than
Europeans, ranging from different levels of access to health care to different
levels of disease.
“If [Kennedy] would like to get us universal health care, then maybe we can have
a conversation about having the schedule adjusted,” Demetre Daskalakis, who led
the Centers for Disease Control and Prevention’s National Center for
Immunization and Respiratory Diseases before resigning in protest in August,
told POLITICO.
Children, especially those who live in poor and rural areas, would be at greater
risk for severe disease and death if the U.S. were to drop shots from its
schedule, Daskalakis said. Denmark, for instance, advises immunizing against
only 10 of the 18 diseases American children were historically recommended
immunizations against. It excludes shots for potentially serious infections,
including hepatitis A and B, meningitis and respiratory syncytial virus.
Under Kennedy, the government has already changed its hepatitis B vaccine
recommendations for newborns this year, even as critics warned the new advice
could lead to more chronic infections, liver problems and cancer. The health
department points out that the new guidance on hepatitis B — that mothers who
test negative for the virus may skip giving their newborn a shot in the hospital
— now align more closely with most countries in Europe.
Public health experts and others critical of the move say slimmer European
vaccine schedules are a cost-saving measure and a privilege afforded to
healthier societies, not a tactic to protect kids from vaccine injuries.
Kennedy’s interest in modeling the U.S. vaccine schedule after Europe, they
point out, is underpinned by his belief that some childhood vaccines are unsafe
and that American kids get too many too young.
Kennedy’s safety concerns don’t align with the rationale underpinning the
approach in Europe, where the consensus is that childhood vaccines are safe.
Wealthy European countries in many cases eschew vaccines based on a risk-benefit
calculus that doesn’t hold in America. European kids often don’t get certain
shots because it would prevent a very small number of cases — like hepatitis B —
or because the disease is rarely serious for them, such as Covid-19 and
chickenpox. But since the U.S. doesn’t have universal access to care,
vaccinating provides more return on investment, experts say.
“We just have a tradition to wait a little bit” before adding vaccines to
government programs, said Johanna Rubin, a pediatrician and vaccine expert for
Sweden’s health agency.
Swedish children are advised to get vaccines for 11 diseases before they turn
18.
Rubin cited the need to verify the shots’ efficacy and the high cost of new
vaccines as reasons Sweden moves slowly to add to its schedule. “It has to go
through the health economical model,” she said.
VACCINE SAFETY’S NOT THE ISSUE
Martin Kulldorff, a Swedish native and former Harvard Medical School professor
who led Kennedy’s vaccine advisory panel until this month, pointed to that
country’s approach to vaccination and public health in an interview with
POLITICO earlier this year.
Before the Centers for Disease Control and Prevention this month dropped its
recommendation that children of mothers who test negative for hepatitis B
receive a vaccine within a day of birth, Kulldorff cited Sweden’s policy.
“In Sweden, the recommendation is that you only do that if the mother has the
infection. That’s the case in most European countries,” he said. “You could have
a discussion whether one or the other is more reasonable.”
The U.S. policy, as of Dec. 16, more closely resembles Sweden’s, with hepatitis
B-negative mothers no longer urged to vaccinate their newborns against the virus
at birth. But Sweden’s public health agency recommends that all infants be
vaccinated, and the country’s regional governments subsidize those doses, which
are administered as combination shots targeting six diseases starting at 3
months.
Public health experts warn that even children of hepatitis B-negative mothers
could catch the virus from others via contact with caregivers who are positive
or shared household items.
The prevalence of chronic hepatitis B in the U.S. is 6.1 percent compared to 0.3
percent in Sweden, according to the Coalition for Global Hepatitis Elimination,
a Georgia-based nonprofit which receives funding from pharmaceutical companies,
the CDC and the National Institutes of Health, among others.
Michael Osterholm, the director of the Center for Infectious Disease Research
and Policy at the University of Minnesota, said the U.S. has taken a more
comprehensive approach to vaccination, in part because its population is sicker
than that of some Western European countries, and the impact of contracting a
disease could be more detrimental.
Osterholm pointed to the Covid pandemic as an example. By May 2022, the U.S. had
seen more than 1 million people die. Other high-income countries — though much
smaller — had more success controlling mortality, he said.
“People tried to attribute [the disparity] to social, political issues, but no,
it was because [peer nations] had so many more people who were actually in
low-risk categories for serious illness,” Osterholm said.
Kennedy and his advisers also cited European views on Covid vaccination in the
spring when the CDC dropped its universal recommendation, instead advising
individuals to talk to their providers about whether to get the shot.
Last month, the Food and Drug Administration’s top vaccine regulator, Vinay
Prasad, linked the deaths of 10 children to Covid vaccination without providing
more detailed information about the data behind his assertion.
European countries years ago stopped recommending repeat Covid vaccination for
children and other groups not considered at risk of becoming severely sick.
Covid shots have been linked to rare heart conditions, primarily among young
men.
European vaccine experts say Covid boosters were not recommended routinely for
healthy children in many countries — not because of safety concerns, but because
it’s more cost-effective to give them to high-risk groups, such as elderly
people or those with health conditions that Covid could make severely sick and
put in the hospital.
In the U.K., Covid-related hospitalizations and deaths declined significantly
after the pandemic, and now are “mostly in the most frail in the population,
which has led to more restricted use of the vaccines following the
cost-effectiveness principles,” said Andrew Pollard, the director of the Oxford
Vaccine Group in the United Kingdom, which works on developing vaccines and was
behind AstraZeneca’s Covid-19 shot.
Pollard led the Joint Committee on Vaccination and Immunization, which advises
the U.K. government, for 12 years before stepping down in September.
In the U.S., more moves to follow Europe are likely.
At a meeting of Kennedy’s vaccine advisers earlier this month, Tracy Beth Høeg,
now acting as the FDA’s top drug regulator, pointed to Denmark’s pediatric
schedule, which vaccinates for 10 diseases, while questioning whether healthy
American children should be subject to more vaccines than their Danish
counterparts.
Danish kids typically don’t get shots for chickenpox, the flu, hepatitis A and
B, meningitis, respiratory syncytial virus and rotavirus, like American children
do, though parents can privately pay for at least some of those vaccines. The
country offers free Covid and flu vaccines to high-risk kids.
After the vaccine advisory meeting wrapped, Trump said he was on board,
directing Kennedy to “fast track” a review of the U.S. vaccine schedule and
potentially align it with other developed nations. He cited Denmark, Germany and
Japan as countries that recommend fewer shots. Last week, Kennedy came within
hours of publicly promoting Denmark’s childhood vaccine schedule as an option
for American parents.
The announcement was canceled at the last minute after the HHS Office of the
General Counsel said it would invite a lawsuit the administration could lose, a
senior department official told POLITICO.
The notion that the U.S. would drop its vaccine schedule in favor of a European
one struck health experts there as odd.
Each country’s schedule is based on “the local situation, so the local
epidemiology, structure of health care services, available resources, and
inevitably, there’s a little bit of political aspect to it as well,” said Erika
Duffell, a principal expert on communicable disease prevention and control at
the European Centre for Disease Prevention and Control, an EU agency that
monitors vaccine schedules across 30 European countries.
Vaccine safety isn’t the issue, she said.
For example, even though most Europeans don’t get a hepatitis B shot within 24
hours of birth, the previous U.S. recommendation, “there is a consensus that the
effectiveness and safety of the vaccine has been confirmed through decades of
research” and continuous monitoring, she said.
European nations like Denmark and the U.K. have kept new cases of hepatitis B
low. Denmark recorded no cases of mother-to-child transmission in 2023, and
Britain’s rate of such spread is less than 0.1 percent — though the latter does
routinely recommend vaccinating low-risk infants beginning at 2 months of age.
European experts point to high levels of testing of pregnant women for hepatitis
B and most women having access to prenatal care as the reasons for success in
keeping cases low while not vaccinating all newborns.
The major differences between the U.S. and the U.K. in their approach to
hepatitis B vaccination are lower infection rates and high screening uptake in
Britain, plus “a national health system which is able to identify and deliver
vaccines to almost all affected pregnancies selectively,” Pollard said.
The CDC, when explaining the change in the universal birth dose recommendation,
argued the U.S. has the ability to identify nearly all hepatitis B infections
during pregnancy because of ”high reliability of prenatal hepatitis B
screening,” which some European experts doubt.
“If we change a program, we need to prepare the public, we need to prepare the
parents and the health care providers, and say where the evidence comes from,”
said Pierre Van Damme, the director of the Centre for the Evaluation of
Vaccination at the University of Antwerp in Belgium.
He suggested that, if there was convincing evidence, U.S. health authorities
could have run a pilot study before changing the recommendation to evaluate
screening and the availability of testing at birth in one U.S. state, for
example.
WHERE EUROPEANS HAVE MORE DISEASE
In some cases, European vaccination policies have, despite universal health
care, led to more disease.
France, Germany and Italy moved from recommending to requiring measles
vaccination over the last decade after outbreaks on the continent. The U.S.,
until recently, had all but eradicated measles through a universal
recommendation and school requirements.
That’s starting to change. The U.S. is at risk of losing its
“measles-elimination” status due to around 2,000 cases this year that originated
in a Texas religious community where vaccine uptake is low.
The 30 countries in the European Union and the European Economic Area, which
have a population of some 450 million people combined, reported more than 35,000
measles cases last year, concentrated in Romania, Austria, Belgium and Ireland.
Europe’s comparatively high rate is linked to lower vaccination coverage than
the level needed to prevent outbreaks: Only four of the 30 countries reached the
95-percent threshold for the second measles dose in 2024, according to the
European Centre for Disease Prevention and Control.
Kennedy touted the U.S.’s lower measles rate as a successful effort at
containing the sometimes-deadly disease, but experts say the country could soon
see a resurgence of infectious diseases due to the vaccine skepticism that grew
during the pandemic and that they say Kennedy has fomented. Among
kindergarteners, measles vaccine coverage is down 2.7 percentage points as of
the 2024-2025 school year, from a peak of 95.2 percent prior to the pandemic,
according to CDC data.
That drop occurred before Kennedy became health secretary. Kennedy and his
advisers blame it on distrust engendered by Covid vaccine mandates imposed by
states and President Joe Biden. But Kennedy led an anti-vaccine movement for
years before joining the Trump administration, linking shots to autism and other
conditions despite scientific evidence to the contrary, and he has continued to
question vaccine safety as secretary.
In some EU nations, vaccines aren’t compulsory for school entry. Swedish law
guarantees the right to education and promotes close consultation between
providers and patients. Some governments fear mandates could push away
vaccine-hesitant parents who want to talk the recommended shots over with their
doctor before giving the vaccines to their children, Rubin explained.
In the U.S., states, which have the authority to implement vaccine mandates for
school entry, rely on the CDC’s guidance to decide which to require. Vaccine
skeptics have pushed the agency to relax some of its recommendations with an eye
toward making it easier for American parents to opt out of routine shots.
Scandinavian nations maintain high vaccine uptake without mandates thanks to
“high trust” in public health systems, Rubin said. In Sweden, she added, nurses
typically vaccinate young children at local clinics and provide care for them
until they reach school age, which helps build trust among parents.
CHICKENPOX
Another example of where the U.S. and Europe differ is the chickenpox vaccine.
The U.S. was the first country to begin universal vaccination against the common
childhood illness in 1995; meanwhile, 13 EU nations broadly recommend the shot.
Denmark doesn’t officially track chickenpox — the vaccine isn’t included on its
schedule — but estimates 60,000 cases annually in its population of 6 million.
The vastly larger U.S. sees fewer than 150,000 cases per year, according to the
CDC.
Many European countries perceive chickenpox as a benign disease, Van Damme said.
“If you have a limited budget for prevention, you will spend usually the money
in other preventative interventions, other vaccines than varicella,” he said,
referring to the scientific term for chickenpox.
But there’s another risk if countries decide to recommend chickenpox
vaccination, he explained. If the vaccination level is low, people remain
susceptible to the disease, which poses serious risks to unborn babies. If it’s
contracted in early pregnancy, chickenpox could trigger congenital varicella
syndrome, a rare disorder that causes birth defects.
If children aren’t vaccinated against chickenpox, almost all would get the
disease by age 10, Van Damme explained. If countries opt for vaccination, they
have to ensure robust uptake: vaccinate virtually all children by 10, or risk
having big pockets of unvaccinated kids who could contract higher-risk
infections later.
Europe’s stance toward chickenpox could change soon. Several countries are
calculating that widely offering chickenpox vaccines would provide both public
health and economic benefits. Britain is adding the shot to its childhood
schedule next month. Sweden is expected to green-light it as part of its
national program in the coming months.
While the public doesn’t see it as a serious disease, pediatricians who see
serious cases of chickenpox are advocating for the vaccine, Rubin told POLITICO.
“It is very contagious,” she said. “It fulfills all our criteria.”
The U.K. change comes after its vaccine advisory committee reviewed new data on
disease burden and cost-effectiveness — including a 2022 CDC study of the U.S.
program’s first 25 years that also examined the vaccine’s impact on shingles, a
painful rash that can occur when the chickenpox virus reactivates years later.
Scientists had theorized for years that limiting the virus’ circulation among
children could increase the incidence of shingles in older adults by eliminating
the “booster” effect of natural exposure, but the U.S. study found that
real-world evidence didn’t support that hypothesis.
Disclaimer
POLITICAL ADVERTISEMENT
* This is sponsored content from AstraZeneca.
* The advertisement is linked to public policy debates on the future of cancer
care in the EU.
More information here.
Europe has made huge strides in the fight against cancer.[1] Survival rates have
climbed, detection has improved and the continent has become home to some of the
world’s most respected research hubs.[2],[3] None of that progress came easy —
it was built on years of political attention and cooperation across borders.
However, as we look to 2026 and beyond, that progress stands at a crossroads.
Budget pressures and tougher global competition threaten to push cancer and
health care down the EU agenda. Europe’s Beating Cancer Plan — a flagship
initiative aimed at expanding screening, improving early detection and boosting
collaboration — is set to expire in 2027, with no clear plan to secure or extend
its gains.[4],[5]
“My [hope is that we can continue] the work started with Europe’s Beating Cancer
Plan and make it sustainable… [and] build on the lessons learned, [for other
disease areas] ” says Antonella Cardone, CEO of Cancer Patients Europe.
A new era in cancer treatment
Concern about the lapsing initiative is compounded by two significant shifts in
health care: declining investment and increasing scientific advancement.
Firstly, Europe has seen the increased adoption of cost-containment policies by
some member states. Under-investment in Europe in cancer medicines has been a
challenge — specifically with late and uneven funding, and at lower levels than
international peers such as the US — potentially leaving patients with slower
and more limited access to life-saving therapies.[6],[7],[8] Meanwhile, the
U.S., which pays on average double for medicines per capita than the EU,[9] is
actively working to rebalance its relationship with pharmaceuticals to secure
better pricing (“fair market value”) through policies across consecutive
administrations.[10] All the while, China is rapidly scaling investment in
biotech and clinical research, determined to capture the trials, talent, and
capital that once flowed naturally to Europe.[11]
The rebalancing of health and life-science investment can have significant
consequences. If Europe does not stay attractive for life-sciences investment,
the impact will extend beyond cancer patient outcomes. Jobs, tax revenues,
advanced manufacturing, and Europe’s leadership in strategic industries are all
at stake.[12]
Secondly, medical science has never looked more promising.[7] Artificial
intelligence is accelerating drug discovery, clinical trials, and diagnostics,
and the number of approved medicines for patients across Europe has jumped from
an average of one per year between 1995 and 2000 to 14 per year between 2021 and
2024.[13],[14],[15], [7] Digital health tools and innovative medtech startups
are multiplying, increasing competitiveness and lowering costs — guiding care
toward a future that is more personalized and precise.[16],[17]
Europe stands at the threshold of a new era in cancer treatment. But if
policymakers ease up now, progress could stall — and other regions, especially
the U.S. and China, are more than ready to widen the innovation gap.
Recognizing the strategic investment
Health spending is generally treated as a budget item to be contained. Yet
investment in cancer care has been one of Europe’s smartest economic
bets.[18],[19] The sector anchors millions of high-skilled jobs (it employs
around 29 million people in the EU[11]) and attracts global life sciences
investment. According to the European Commission, the sector contributes nearly
€1.5 trillion to the EU economy.[12] Studies from the Institute of Health
Economics confirm that money put into research directly translates into better
survival outcomes.[20]
The same report shows that although the overall spend on cancer is increasing,
the cost per patient has actually decreased since 1995, suggesting that
innovative treatments are increasing efficiency.[20]
Those gains matter not only to patients and families, but to Europe’s long-term
stability: healthier populations mean fewer costs down the line, stronger
productivity, and more sustainable public finances.[20]
Fixing Europe’s access gap
Cancer medicines bring transformative value — to patients, to society and to the
wider economy. [21]
However, even as oncology therapies advance, patients across Europe are not
benefiting equally. EFPIA’s 2024 Patients W.A.I.T. indicator shows that, on
average, just 46 percent of innovative medicines approved between 2020 and 2023
were available to patients in 2024.[22] On average, it takes 578 days for a new
oncology medicine to reach European patients, and only 29 percent of drugs are
fully available in all member states.[23]
This is not caused by a lack of breakthrough medicines, but by national policy
mechanisms that undervalue innovation. OECD and the Institute for Health
Economics data show that divergent HTA requirements, rigid cost-effectiveness
thresholds, price-volume clawbacks, ad hoc taxes on pharmaceutical revenues and
slow national reimbursement decisions collectively suppress timely access to new
cancer medicines across the EU.[24]
These disparities cut against Europe’s long-standing reputation as a collection
of societies that values equitable, high-quality care for all of its citizens.
It risks eroding one of the EU’s defining strengths: the commitment to fairness
and collective progress.
Cancer policy solutions for the EU
Although this is ultimately a matter for member states, embedding cancer as a
permanent EU priority — backed by funding, coordination, and accountability —
could give national systems the incentives and strategic direction to buck these
trends. These actions will reassure pharmaceutical companies that Europe is
serious about attracting clinical trials and the launch of new medicines,
ensuring that its citizens, societies and economies enjoy the benefits this
brings.
Europe’s Beating Cancer Plan delivered progress, but its expiry presents a
pivotal moment. 2026 and beyond bring a significant opportunity for the EU to
build on this by ensuring that member states implement National Cancer Control
Plans and have clear targets and accountability on their national performance,
including on investment and access. To do this, EU policymakers should consider
three actions as an immediate priority with lasting impact:
* Embed cancer and investment within EU governance. Build it into the European
Semester on health with mandatory indicators, regular reviews, and
accountability frameworks to ensure continuity. This model worked well during
Covid-19 and should be adapted for non-communicable diseases starting with
cancer as a pilot.
* Secure stable and sufficient funding. The Multiannual Financial Framework
must ensure adequate funding for health and cancer to encourage coordinated
initiatives across member states.
* Strengthen EU-level coordination. Ensure that pan-EU structures such as the
Comprehensive Cancer Centres and Cancer Mission Hubs are adequately funded
and empowered.
These are the building blocks of a lasting European commitment to cancer. With
action, Europe can secure a sustainable foundation for patients, resilience and
continued scientific excellence.
--------------------------------------------------------------------------------
[1] European Commission, OECD/European Observatory on Health Systems and
Policies. 2023. State of Health in the EU: Synthesis Report 2023. Available at:
https://health.ec.europa.eu/system/files/2023-12/state_2023_synthesis-report_en.pdf
[Accessed December 2025]
[2] Efpia. 2025. Cancer care 2025: an overview of cancer outcomes data across
Europe. Available at:
https://www.efpia.eu/news-events/the-efpia-view/statements-press-releases/ihe-cancer-comparator-report-2025/
[Accessed December 2025]
[3] Cancer Core Europe. 2024. Cancer Core Europe: Advancing Cancer Care Through
Collaboration. Available at:
https://www.cancercoreeurope.eu/cce-advancing-cancer-care-collaboration/
[Accessed December 2025]
[4] European Commission. 2021. Europe’s Beating Cancer Plan. Available
at:https://health.ec.europa.eu/system/files/2022-02/eu_cancer-plan_en_0.pdf
[Accessed December 2025]
[5] European Parliament. 2025. Europe’s Beating Cancer Plan: Implementation
findings.
https://www.europarl.europa.eu/RegData/etudes/STUD/2025/765809/EPRS_STU(2025)765809_EN.pdf
[Accessed December 2025]
[6] Hofmarcher, T., et al. 2024. Access to Oncology Medicines in EU and OECD
Countries (OECD Health Working Papers, No.170). OECD Publishing. Available at:
https://www.oecd.org/content/dam/oecd/en/publications/reports/2024/09/access-to-oncology-medicines-in-eu-and-oecd-countries_6cf189fe/c263c014-en.pdf
[Accessed December 2025]
[7] Manzano, A., et al. 2025. Comparator Report on Cancer in Europe 2025 –
Disease Burden, Costs and Access to Medicines and Molecular Diagnostics (IHE).
Available at: https://ihe.se/app/uploads/2025/03/IHE-REPORT-2025_2_.pdf
[Accessed December 2025]
[8] Efpia. [no date]. Europe’s choice. Available at:
https://www.efpia.eu/europes-choice/ [Accessed December 2025]
[9] OECD. 2024. Prescription Drug Expenditure per Capita.
https://data-explorer.oecd.org/vis?lc=en&pg=0&snb=1&vw=tb&df[ds]=dsDisseminateFinalDMZ&df[id]=DSD_SHA%40DF_SHA&df[ag]=OECD.ELS.HD&df[vs]=&pd=2015%2C&dq=.A.EXP_HEALTH.USD_PPP_PS%2BPT_EXP_HLTH._T..HC51%2BHC3.._T…&to[TIME_PERIOD]=false&lb=bt
[Accessed December 2025]
[10] The White House. 2025. Delivering most favored-nation prescription drug
pricing to American patients. Available at:
https://www.whitehouse.gov/presidential-actions/2025/05/delivering-most-favored-nation-prescription-drug-pricing-to-american-patients/
[Accessed December 2025]
[11] Eleanor Olcott, Haohsiang Ko and William Sandlund. 2025. The relentless
rise of China’s Biotechs. Financial Times. Available at:
https://www.ft.com/content/c0a1b15b-84ee-4549-85eb-ed3341112ce5 [Accessed
December 2025]
[12] European Commission, Directorate-General for Communication. 2025. Making
Europe a Global Leader in Life Sciences. Available at:
https://commission.europa.eu/news-and-media/news/making-europe-global-leader-life-sciences-2025-07-02_en
[Accessed December 2025]
[13] Financial Times. 2025. How AI is reshaping drug discovery. Available at:
https://www.ft.com/content/8c8f3c10-9c26-4e27-bc1a-b7c3defb3d95 [Accessed
December 2025]
[14] Seedblink. 2025. Europe’s HealthTech investment landscape in 2025: A deep
dive.
https://seedblink.com/blog/2025-05-30-europes-healthtech-investment-landscape-in-2025-a-deep-dive
[15] European Commission. [No date]. Artificial Intelligence in healthcare.
Available at:
https://health.ec.europa.eu/ehealth-digital-health-and-care/artificial-intelligence-healthcare_en
[Accessed December 2025]
[16] Codina, O. 2025. Code meets care: 20 European HealthTech startups to watch
in 2025 and beyond. EU-Startups. Available at:
https://www.eu-startups.com/2025/06/code-meets-care-20-european-healthtech-startups-to-watch-in-2025-and-beyond
[Accessed December 2025]
[17] Protogiros et al. 2025. Achieving digital transformation in cancer care
across Europe: Practical recommendations from the TRANSiTION project. Journal of
Cancer Policy. Available at:
https://www.sciencedirect.com/science/article/pii/S2213538325000281 [Accessed
December 2025]
[18] R-Health Consult. [no date]. The case for investing in a healthier future
for the European Union. EFPIA. Available at:
https://www.efpia.eu/media/xpkbiap5/the-case-for-investing-in-a-healthier-future-for-the-european-union.pdf
[Accessed December 2025]
[19] Pousette A., Hofmarcher T. 2024.Tackling inequalities in cancer care in the
European Union. Available at:
https://ihe.se/en/rapport/tackling-inequalities-in-cancer-care-in-the-european-union-2/
[Accessed December 2025]
[20] Efpia. 2025. Comparator Report Cancer in Europe 2025. Available at:
https://www.efpia.eu/media/0fbdi3hh/infographic-comparator-report-cancer-in-europe.pdf
[Accessed December 2025]
[21] Garau, E. et al. 2025. The Transformative Value of Cancer Medicines in
Europe. Dolon Ltd. Available at:
https://dolon.com/wp-content/uploads/2025/09/EOP_Investment-Value-of-Oncology-Medicines-White-Paper_2025-09-19-vF.pdf?x16809
[Accessed December 2025]
[22] IQVIA. 2025. EFPIA Patients W.A.I.T. Indicator 2024 Survey. Available at:
https://www.efpia.eu/media/oeganukm/efpia-patients-wait-indicator-2024-final-110425.pdf
[Accessed December 2025]
[23] Visentin M. 2025. Improving equitable access to medicines in Europe must
remain a priority. The Parliament. Available at:
https://www.theparliamentmagazine.eu/partner/article/improving-equitable-access-to-medicines-in-europe-must-remain-a-priority
[Accessed December 2025]
[24] Hofmarcher, T. et al. 2025. Access to novel cancer medicines in Europe:
inequities across countries and their drivers. ESMO Open. Available at:
https://www.esmoopen.com/action/showPdf?pii=S2059-7029%2825%2901679-5 [Accessed
December 2025]
Thirty-six million Europeans — including more than one million in the Nordics[1]
— live with a rare disease.[2] For patients and their families, this is not just
a medical challenge; it is a human rights issue.
Diagnostic delays mean years of worsening health and needless suffering. Where
treatments exist, access is far from guaranteed. Meanwhile, breakthroughs in
genomics, AI and targeted therapies are transforming what is possible in health
care. But without streamlined systems, innovations risk piling up at the gates
of regulators, leaving patients waiting.
Even the Nordics, which have some of the strongest health systems in the world,
struggle to provide fair and consistent access for rare-disease patients.
Expectations should be higher.
THE BURDEN OF DELAY
The toll of rare diseases is profound. People living with them report
health-related quality-of-life scores 32 percent lower than those without.
Economically, the annual cost per patient in Europe — including caregivers — is
around €121,900.[3]
> Across Europe, the average time for diagnosis is six to eight years, and
> patients continue to face long waits and uneven access to medications.
In Sweden, the figure is slightly lower at €118,000, but this is still six times
higher than for patients without a rare disease. Most of this burden (65
percent) is direct medical costs, although non-medical expenses and lost
productivity also weigh heavily. Caregivers, for instance, lose almost 10 times
more work hours than peers supporting patients without a rare disease.[4]
This burden can be reduced. European patients with access to an approved
medicine face average annual costs of €107,000.[5]
Yet delays remain the norm. Across Europe, the average time for diagnosis is six
to eight years, and patients continue to face long waits and uneven access to
medications. With health innovation accelerating, each new therapy risks
compounding inequity unless access pathways are modernized.
PROGRESS AND REMAINING BARRIERS
Patients today have a better chance than ever of receiving a diagnosis — and in
some cases, life-changing therapies. The Nordics in particular are leaders in
integrated research and clinical models, building world-class diagnostics and
centers of excellence.
> Without reform, patients risk being left behind.
But advances are not reaching everyone who needs them. Systemic barriers
persist:
* Disparities across Europe: Less than 10 percent of rare-disease patients have
access to an approved treatment.[6] According to the Patients W.A.I.T.
Indicator (2025), there are stark differences in access to new orphan
medicines (or drugs that target rare diseases).[7] Of the 66 orphan medicines
approved between 2020 and 2023, the average number available across Europe
was 28. Among the Nordics, only Denmark exceeded this with 34.
* Fragmented decision-making: Lengthy health technology assessments, regional
variation and shifting political priorities often delay or restrict access.
Across Europe, patients wait a median of 531 days from marketing
authorization to actual availability. For many orphan drugs, the wait is even
longer. In some countries, such as Norway and Poland, reimbursement decisions
take more than two years, leaving patients without treatment while the burden
of disease grows.[8]
* Funding gaps: Despite more therapies on the market and greater technology to
develop them, orphan medicines account for just 6.6 percent of pharmaceutical
budgets and 1.2 percent of health budgets in Europe. Nordic countries —
Sweden, Norway and Finland — spend a smaller share than peers such as France
or Belgium. This reflects policy choices, not financial capacity.[9]
If Europe struggles with access today, it risks being overwhelmed tomorrow.
Rare-disease patients — already facing some of the longest delays — cannot
afford for systems to fall farther behind.
EASING THE BOTTLENECKS
Policymakers, clinicians and patient advocates across the Nordics agree: the
science is moving faster than the systems built to deliver it. Without reform,
patients risk being left behind just as innovation is finally catching up to
their needs. So what’s required?
* Governance and reforms: Across the Nordics, rare-disease policy remains
fragmented and time-limited. National strategies often expire before
implementation, and responsibilities are divided among ministries, agencies
and regional authorities. Experts stress that governments must move beyond
pilot projects to create permanent frameworks — with ring-fenced funding,
transparent accountability and clear leadership within ministries of health —
to ensure sustained progress.
* Patient organizations: Patient groups remain a driving force behind
awareness, diagnosis and access, yet most operate on short-term or
volunteer-based funding. Advocates argue that stable, structural support —
including inclusion in formal policy processes and predictable financing — is
critical to ensure patient perspectives shape decision-making on access,
research and care pathways.
* Health care pathways: Ann Nordgren, chair of the Rare Disease Fund and
professor at Karolinska Institutet, notes that although Sweden has built a
strong foundation — including Centers for Rare Diseases, Advanced Therapy
(ATMP) and Precision Medicine Centers, and membership in all European
Reference Networks — front-line capacity remains underfunded. “Government and
hospital managements are not providing resources to enable health care
professionals to work hands-on with diagnostics, care and education,” she
explains. “This is a big problem.” She adds that comprehensive rare-disease
centers, where paid patient representatives collaborate directly with
clinicians and researchers, would help bridge the gap between care and lived
experience.
* Research and diagnostics: Nordgren also points to the need for better
long-term investment in genomic medicine and data infrastructure. Sweden is a
leader in diagnostics through Genomic Medicine Sweden and SciLifeLab, but
funding for advanced genomic testing, especially for adults, remains limited.
“Many rare diseases still lack sufficient funding for basic and translational
research,” she says, leading to delays in identifying genetic causes and
developing targeted therapies. She argues for a national health care data
platform integrating electronic records, omics (biological) data and
patient-reported outcomes — built with semantic standards such as openEHR and
SNOMED CT — to enable secure sharing, AI-driven discovery and patient access
to their own data
DELIVERING BREAKTHROUGHS
Breakthroughs are coming. The question is whether Europe will be ready to
deliver them equitably and at speed, or whether patients will continue to wait
while therapies sit on the shelf.
There is reason for optimism. The Nordic region has the talent, infrastructure
and tradition of fairness to set the European benchmark on rare-disease care.
But leadership requires urgency, and collaboration across the EU will be
essential to ensure solutions are shared and implemented across borders.
The need for action is clear:
* Establish long-term governance and funding for rare-disease infrastructure.
* Provide stable, structural support for patient organizations.
* Create clearer, better-coordinated care pathways.
* Invest more in research, diagnostics and equitable access to innovative
treatments.
Early access is not only fair — it is cost-saving. Patients treated earlier
incur lower indirect and non-medical costs over time.[10] Inaction, by contrast,
compounds the burden for patients, families and health systems alike.
Science will forge ahead. The task now is to sustain momentum and reform systems
so that no rare-disease patient in the Nordics, or anywhere in Europe, is left
waiting.
--------------------------------------------------------------------------------
[1]
https://nordicrarediseasesummit.org/wp-content/uploads/2025/02/25.02-Nordic-Roadmap-for-Rare-Diseases.pdf
[2]
https://nordicrarediseasesummit.org/wp-content/uploads/2025/02/25.02-Nordic-Roadmap-for-Rare-Diseases.pdf
[3]
https://media.crai.com/wp-content/uploads/2024/10/28114611/CRA-Alexion-Quantifying-the-Burden-of-RD-in-Europe-Full-report-October2024.pdf
[4]
https://media.crai.com/wp-content/uploads/2024/10/28114611/CRA-Alexion-Quantifying-the-Burden-of-RD-in-Europe-Full-report-October2024.pdf
[5]
https://media.crai.com/wp-content/uploads/2024/10/28114611/CRA-Alexion-Quantifying-the-Burden-of-RD-in-Europe-Full-report-October2024.pdf
[6]
https://www.theparliamentmagazine.eu/partner/article/a-competitive-and-innovationled-europe-starts-with-rare-diseases?
[7]
https://www.iqvia.com/-/media/iqvia/pdfs/library/publications/efpia-patients-wait-indicator-2024.pdf
[8]
https://www.iqvia.com/-/media/iqvia/pdfs/library/publications/efpia-patients-wait-indicator-2024.pdf
[9]
https://copenhageneconomics.com/wp-content/uploads/2025/09/Copenhagen-Economics_Spending-on-OMPs-across-Europe.pdf
[10]
https://media.crai.com/wp-content/uploads/2024/10/28114611/CRA-Alexion-Quantifying-the-Burden-of-RD-in-Europe-Full-report-October2024.pdf
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LONDON — A mutated influenza strain is spreading early in Europe this winter,
but some experts warn talk of a “superflu” is misleading, erodes public trust
and distracts from the underlying problems of the National Health Service.
The new strain has triggered dramatic headlines in the U.K., where health
leaders are warning of a “worst-case scenario” for the country’s NHS. Health
Secretary Wes Streeting described it as a “tidal wave of flu tearing through our
hospitals” and labelled it a “challenge unlike any [the NHS] has seen since the
pandemic.”
While hospital admissions have been rising sharply due to the early arrival of
flu season, there is currently no evidence that this season’s variant is more
deadly or transmissible, experts at the World Health Organization (WHO) and the
European Centre for Disease Prevention and Control (ECDC) told POLITICO. Neither
does the data suggest hospital admissions will peak higher than previous years —
although this is possible — just that they’re a few weeks early.
But some experts in the U.K. have criticized the government’s “superflu”
narrative, suggesting it’s being used as leverage in talks on doctor pay and
conditions ahead of a looming strike.
Prime Minister Keir Starmer wrote in The Guardian Friday it was “beyond belief”
doctors would consider striking in these “potentially dire” circumstances,
citing “a superflu epidemic.”
The British Medical Association (BMA), the union representing resident doctors
due to go on strike Wednesday, claimed it was “irresponsible to portray the
current winter flu crisis as unprecedented” given that rates of infection and
hospitalization were “comparable to most years,” a spokesperson told POLITICO.
Mathematician Christina Pagel, a professor at University College London, said
the “superflu” line was based on the “highly misleading use of statistics” and
had more to do with the impending doctors’ strike than real trends.
When contacted by POLITICO, the U.K. government stood by its health leaders’
warnings of the current flu season, in which they described it as an
“unprecedented wave of super flu.” They said staff were being “pushed to the
limit.” The government also pointed to stats showing the NHS is under pressure.
A DHSC spokesperson told POLITICO the government had offered the BMA an extended
mandate so they could strike in January instead, but the union rejected it. The
BMA told POLITICO the extension included “several restrictive conditions.”
THE IMPORTANCE OF TRUST
The government and NHS bosses have warned the heavy burden on hospitals in
December could set the health system up for a very severe winter. NHS statistics
published last week show an average of 2,660 patients in hospital with flu per
day, a record for this time of year, while the Health Foundation has said the
NHS could face “major pressures” if cases continue to climb rapidly in the weeks
ahead.
Yet, while NHS staff are stretched, Pagel and others argue this year is largely
consistent with previous severe flu seasons. However, without being clear about
this with the public, some experts are concerned the government’s messaging
could do more harm than good.
“One of the real issues we have with governments everywhere is trust,” Martin
McKee, professor of public health at the London School of Hygiene and Tropical
Medicine, told POLITICO.
While NHS staff are stretched, experts argue this year is largely consistent
with previous severe flu seasons. | Geography Photos/Getty Images
“The difficulty is we’ve seen them do all sorts of things for all sorts of
motives. That then becomes a problem whenever they are saying something
accurate,” McKee said, adding that the government should be more careful in its
flu messaging given the declining trust in science.
POLITICO put these concerns over trust in science to DHSC, but the department
did not respond by the time of publication.
A spokesperson for government-sponsored NHS England told POLITICO: “The NHS is
not misleading the public — this is the earliest flu season we have seen in
recent years with the latest data showing the numbers of patients in hospital
with flu is extremely high for this time of year.”
The NHS is struggling as it often does in winter, with a spike in delayed
discharges — people who are ready to leave hospital but have nowhere to go —
posing an extra challenge for hospitals, The Guardian reported Sunday.
Hospital admissions for flu per 100,000 rose 23 percent in last week’s data,
compared to 69 percent the previous week, but this doesn’t rule out another
surge in the weeks ahead.
McKee said the NHS was paying the price for chronic underinvestment. “We almost
seem surprised that it’s arrived,” he said of the current flu wave, citing a
“massive shortage” in beds, IT equipment and scanners.
WHAT THE EXPERTS SAY
There is no reason to think the current flu strain (H3N2 sub-clade K) causes
more severe disease than other types of flu, Hans Kluge, head of the World
Health Organization’s Europe office, told POLITICO.
Nor is there any solid evidence that it is more transmissible, said Edoardo
Colzani, a flu expert at the European Centre for Disease Prevention and Control.
It’s possible the lower level of immunity to this strain could lead to more
cases “but this is still speculative at this stage,” Colzani said.
“The epidemiological situation at the moment [in the EU] does not seem worse
than in previous years apart from the fact that it is two-to-three weeks
earlier,” Colzani said. Kluge said it was “about 4 weeks earlier than usual,”
which “is not out of the ordinary” and trending similar to the 2022–2023
influenza season.
There were some concerns the available flu vaccine might not be a “perfect
match” for the current strain, Kluge said, but early data from the U.K. suggests
it provides “meaningful protection” and may prevent severe disease and death,
especially among vulnerable groups.
“We [could] end up having a much bigger wave than usual but we have no
evidence,” Pagel said, adding she thought it was “most likely” to peak “in a
couple of weeks.” But the available data can’t tell us whether it will be a
normal wave that starts and ends early, or an especially bad season, she added.
“We don’t know when it will turn the corner but the actual shape of the wave
doesn’t look that different from previous years,” McKee said.
The NHS has previously warned of the risk of a “long and drawn-out flu season”
due to the early start. According to the WHO, some countries in the southern
hemisphere had unusually long flu seasons this year.
“Based on previous trends, this season is expected to peak in late December or
early January,” Kluge said.
The advice from EU and U.K. authorities remains the same — get a flu vaccine as
soon as possible, especially for those in a vulnerable group.