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 Disclaimer POLITICAL ADVERTISEMENT * The sponsor is Alexion Pharmaceuticals * The entity ultimately controlling the sponsor: AstraZeneca plc * The political advertisement is linked to policy advocacy around rare disease governance, funding, and equitable access to diagnosis and treatment across Europe More information here.

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.

Sprawling defense legislation set for a vote as soon as this week would place new restrictions on reducing troop levels in Europe, a bipartisan rebuke of Trump administration moves that lawmakers fear would limit U.S. commitments on the continent. A just-released compromise version of the National Defense Authorization Act — which puts Congress’ stamp on Pentagon programs and policy each year — has been in the works for months. The measure stands in stark contrast to President Donald Trump’s new national security strategy, which sharply criticizes European allies and suggests the continent is in cultural decline. Lawmakers also endorsed a slight increase in the Pentagon budget with a price tag that is $8 billion more than Trump requested. And it would repeal decades-old Middle East war powers, a small win for lawmakers who’ve been fighting to reclaim a sliver of Congress’ war-declaring prerogatives. The final bill is the result of weeks of negotiations between House and Senate leadership in both parties, heads of the Armed Services panels and the White House. The measure had been slowed in recent days by talks on issues unrelated to defense, including a major Senate-backed housing package and greater scrutiny of U.S. investment in China. The defense bill typically passes with broad bipartisan support. Speaker Mike Johnson will likely need to win back some Democrats who opposed the House GOP’s hard-right initial bill in September. And the speaker will have to contend with fellow Republicans upset that their priorities weren’t included. But both House and Senate-passed defense bills reflected bipartisan concerns that the Trump administration would seek to significantly reduce the U.S. military footprint in Europe. Both measures included language that imposes requirements the Pentagon must meet before trimming military personnel levels on the continent below certain thresholds. Republicans, led by Senate Armed Services Chair Roger Wicker (R-Miss.) and House Armed Services Chair Mike Rogers (R-Ala.), broke with the Trump administration, arguing that troop reductions — such as a recent decision to remove a rotational Army brigade from Romania — would invite aggression from Russia. The final bill blocks the Pentagon from reducing the number of troops permanently stationed or deployed to Europe below 76,000 for longer than 45 days until Defense Secretary Pete Hegseth and the head of U.S. European Command certify to Congress that doing so is in U.S. national security interests and that NATO allies were consulted. They would also need to provide assessments of that decision’s impact. The legislation applies the same conditions to restrict the U.S. from vacating the role of NATO’s Supreme Allied Commander in Europe, a role that the U.S. officer who leads European Command chief has held simultaneously for decades. Negotiators included similar limitations on reducing the number of troops on the Korean Peninsula below 28,500, a provision originally approved by the Senate. Lawmakers agreed to a slight increase to the bill’s budget topline, reflecting some momentum on Capitol Hill for more military spending. The final agreement recommends an $8 billion hike to Trump’s $893 billion flat national defense budget, for a total of roughly $901 billion for the Pentagon, nuclear weapons development and other national security programs. The House-passed defense bill matched Trump’s budget request while the Senate bill proposed a $32 billion boost. Republicans separately approved a $150 billion multi-year boost for the Pentagon through their party-line tax cut and spending megabill earlier this year. Regardless of the signal the topline budget agreement sends, the defense policy bill does not allocate any money to the Pentagon. Lawmakers must still pass annual defense spending legislation to fund Pentagon programs. House Armed Services ranking member Adam Smith (D-Wash.) described the agreement as a “placeholder” that would allow lawmakers to finish the NDAA, while congressional appropriators continue their talks on a separate full-year Pentagon funding measure. A House Republican leadership aide who, like others, was granted anonymity to discuss details of the bill ahead of its release, said the revised topline is a “fiscally responsible increase that meets our defense needs.” The bill also would repeal a pair of old laws that authorize military action in the Middle East, including 2002 legislation that preceded the invasion of Iraq and the 1991 Gulf War. Those repeals were included in both the House and Senate defense bills as bipartisan support for scrubbing the old laws — which critics contend could be abused by a president — overcame opposition from some top Republicans. Repealing those decades-old measures is a win for critics of expansive presidential war powers, who argued the measures aren’t needed anymore. They point to the potential for abuses — citing Trump’s use of the 2002 Iraq authorization to partly justify a strike that killed Iranian military commander Qasem Soleimani in Iraq in 2020. A second House GOP leadership aide said the repeal of the two Iraq authorizations won’t impact Trump’s authority as commander-in-chief. But the repeal is ultimately a minor win for lawmakers seeking to reclaim congressional power. The 2001 post-9/11 authorization that undergirds much of the U.S. counterterrorism operations around the world remains on the books. And the bill is silent on Trump’s ongoing campaign against alleged drug smuggling vessels in the Caribbean. Many lawmakers — including some Republicans — have questioned the administration’s legal justification for the lethal strikes. The final bill also doesn’t include an expansion of coverage for in-vitro fertilization and other fertility services for military families under the Tricare health system. The provision, backed by Sen. Tammy Duckworth (D-Ill.), Rep. Sara Jacobs (D-Calif.) and others, was included in both Senate and House bills before it was dropped. Johnson reportedly was seeking to remove the provision, which similarly was left out of last year’s bill.

The World Health Organization has recommended the use of novel weight-loss drugs to curb soaring obesity rates, and urged pharma companies to lower their prices and expand production so that lower-income countries can also benefit. The WHO’s new treatment guideline includes a conditional recommendation to use the so-called GLP-1s — such as Wegovy, Ozempic and Mounjaro — as part of a wider approach that includes healthy diet, exercise and support from doctors. The WHO described its recommendation as “conditional” due to limited data on the long-term efficacy and safety of GLP-1s. The recommendation excludes pregnant women. While GLP-1s are a now well-established treatment in high-income countries, the WHO warns they could reach fewer than 10 percent of people who could benefit by 2030. Among the countries with the highest rates of obesity are those in the Middle East, Latin America and Pacific islands. Meanwhile, Wegovy was only available in around 15 countries as of the start of this year. The WHO wants pharma companies to consider tiered pricing (lower prices in lower-income countries) and voluntary licensing of patents and technology to allow other producers around the word to manufacture GLP-1s, to help expand access to these drugs. Jeremy Farrar, an assistant director general at the WHO, told POLITICO the guidelines would also give an “amber and green light” to generic drugmakers to produce cheaper versions of GLP-1s when the patents expire. Francesca Celletti, a senior adviser on obesity at the WHO, told POLITICO “decisive action” was needed to expand access to GLP-1s, citing the example of antiretroviral HIV drugs earlier this century. “We all thought it was impossible … and then the price went down,” she said.  Key patents on semaglutide, the ingredient in Novo Nordisk’s diabetes and weight-loss drugs Ozempic and Wegovy, will lift in some countries next year, including India, Brazil and China. Indian generics giant Dr. Reddy’s plans to launch a generic semaglutide-based weight-loss drug in 87 countries in 2026, its CEO Erez Israeli said earlier this year, reported Reuters. “U.S. and Europe will open later … (and) all the other Western markets will be open between 2029 to 2033,” Israeli told reporters after the release of quarterly earnings in July. Prices should fall once generics are on the market, but that isn’t the only barrier. Injectable drugs, for example, need cold chain storage. And health systems need to be equipped to roll out the drug once it’s affordable, Celletti said. 

LONDON — Milkshakes and lattes will be subject to a sugar tax for the first time, U.K. Health Secretary Wes Streeting said Tuesday. Speaking ahead of the budget, Streeting said the government would remove the exemption that milk-based products currently have from the Soft Drinks Industry Levy in January 2028. The threshold at which the levy is imposed will also be lowered from 5 grams to 4.5 grams (g) per 100 milliliters (ml). Commonly dubbed the “sugar tax,” the levy, which was introduced in 2018 under the previous Conservative government, aims to reduce obesity and improve child health.  “Obesity robs children of the best possible start in life,” Streeting told MPs Tuesday. “It hits the poorest hardest — sets them up for a lifetime of problems.” Bottles and cartons of milkshakes, flavored milk,  sweetened yoghurt drinks, chocolate milk drinks, ready-to-drink coffees and milk substitute drinks will now be eligible for the levy. Drinks prepared in cafes and bars remain out of scope. The levy requires companies producing drinks that contain between 5g and 8g of sugar per 100ml to pay 19.4 pence per liter while drinks with 8g or more of sugar must pay 25.9 pence per liter. A government document published Tuesday said ministers expect the Treasury to raise between £40 million and £45 million a year as a result of the changes. The average sugar content in drinks has fallen by almost 50 percent since the levy’s introduction. It is associated with a fall in rotten tooth extractions in kids and an estimated 8 percent relative reduction in obesity levels among young girls. Sarah Woolnough, chief executive of the King’s Fund health think tank, said the measure was “not only common sense but also a quick win for government and, most importantly, for children and young people.”

LONDON — Britain’s Department of Health is pressing ahead with plans to open up a trove of pandemic-era patient data to outside researchers — despite concerns from doctors’ representatives. A formal direction titled “GP Data for Consented Research,” yet to be signed by Health Secretary Wes Streeting but shared in draft format with doctors’ reps, would enable NHS England to disseminate patient data originally collected solely for the purpose of Covid-19-related research to other studies. The Department of Health and Social Care (DHSC) confirmed to POLITICO that the direction has been drafted and is awaiting Streeting’s signature. A group of doctors has warned the government that the move could erode patient trust. While the direction says government will obtain patient consent to share the data more broadly, doctors groups are worried this won’t happen in practice, and that patients won’t be aware their data is being funneled to other studies. NHS England has been in discussions with the Joint GP IT Committee, which comprises representatives from the British Medical Association (BMA) and Royal College of General Practitioners (RCGP), about the data, a person close to the talks told POLITICO. DHSC confirmed it had been in dialogue with the doctors’ groups, and a spokesperson said it had delayed signing the direction in order to engage with doctors’ concerns. The JGPITC argued it hasn’t been properly consulted on the change in line with established governance processes, and that repurposing the dataset without asking patients’ permission risks damaging already-fragile public confidence in the profession, the same person said.  While the direction says government will obtain patient consent to share the data more broadly, doctors groups are worried this won’t happen in practice, and that patients won’t be aware their data is being funneled to other studies. | Pool photo by Hannah McKay/EPA It comes after the same group of doctors filed a formal complaint to the Information Commissioner’s Office in June alleging that NHS England had breached data protection law by training a general-purpose AI model on the same dataset without consent. The disagreement is also set against the wider backdrop of a long-running dispute between government and the BMA over doctors’ pay and working conditions. DHSC maintains that proper processes have been followed. “As the Secretary of State made clear last year during his speech to the Royal College of GPs in October 2024, we are committed to implementing this direction in line with patients’ explicit consent for their data to be used in research,” a DHSC spokesperson said. ‘CONSULTED EXTENSIVELY’ In his speech last month, Streeting said he would direct NHS England to take responsibility for sharing patient data with projects including UK Biobank, Genomics England and Our Future Health. “I know there are issues we need to work through together around information governance, risk and liabilities,” he said. “There’s also, let’s be honest, some producer interest in play.” NHS England asked the JGPITC to confirm whether it was happy with the direction on broadening access to the dataset by Nov. 4. The JGPITC couldn’t reach a consensus to give its blessing to the change, the same person close to the talks and cited above said. The doctors’ group has pushed for NHS England to notify consenting participants about where their data is going via text or the NHS App, they added. DHSC is not obligated to comply with any of the JGPITC’s requests. “We have consulted extensively with GP representatives over the past 18 months to ensure patients’ wishes are respected and their data used appropriately, while minimizing the burden on busy GPs,” DHSC’s spokesperson said.

COPD affects over 390 million people, including more than 36 million in Europe, and is poised to be the leading cause of hospital admissions over the next decade worldwide.1,2,3 In Europe, countries such as Ireland, Romania and Denmark have among the highest hospital admission rates for people with COPD, representing significant costs for health systems.4 Meanwhile, countries like Norway and Germany spend the most per patient on COPD management.5 Awareness is rising, and more stakeholders are taking a proactive approach to address the growing burden of COPD. However, it remains an underestimated and under-resourced disease. Innovation in COPD offers significant opportunities for more proactive patient care, where exacerbations and hospitalizations could be prevented. By investing in the latest wave of healthcare innovation and prioritizing preventative methods, the growing economic and patient burden of COPD can be mitigated. Understanding the patient burden To truly understand COPD, it’s critical to recognize its impact on patients. For most, COPD means a daily struggle with breathlessness, persistent coughing and increased fatigue as their lung function gradually deteriorates. These symptoms can severely limit their ability to do everyday tasks such as walking the dog, climbing stairs or even carrying groceries, impacting their quality of life and overall well-being.6 This, in turn, can lead to considerable financial burden for people affected by this condition due to limitations on workplace and home productivity, and the costs of medical treatment, impacting the EU’s competitiveness.6 And the picture gets worse when patients experience exacerbations. The patient cost of COPD exacerbations, and resulting hospitalizations, is equally profound. Tragically, one in ten patients hospitalized for COPD will die during their stay.7 About one in four will not live to see another year,8 and half will succumb to the disease within five years.9  But even before these dire outcomes, the impact of COPD is felt in the diminished quality of life, frequent sick leave and increasing disability that patients endure between exacerbations, creating dependencies within families and adding to the emotional and financial strain. > Tragically, one in ten patients hospitalized for COPD will die during their > stay.7 About one in four will not live to see another year,8 and half will > succumb to the disease within five years.9 For individuals who recover, each exacerbation inflicts irreversible damage, significantly degrading lung function, increasing disability and severely impacting quality of life. This leads to a greater reliance on healthcare services over time, creating a vicious cycle of health decline. The disease also takes an immense emotional toll on families and caregivers, who stand witness to their loved one’s devastating disease progression and often bear the care burden. In the Netherlands, caregivers of COPD patients with exacerbations provide up to 14 hours of informal care weekly.10 In Spain, it’s estimated that over 220,000 caregivers are needed to support those with COPD-related disabilities.11 > Since my diagnosis with COPD, the biggest challenge for my wife and I is the > uncertainty. I wake up every morning wondering if this will be a good day or a > bad day. Will I be able to go about my usual activities or face a debilitating > exacerbation? Durham, person living with COPD Currently, resources are often concentrated on managing advanced disease, missing the crucial opportunity for earlier and more effective intervention through disease-specific programs and early detection. Prioritizing prevention is essential to improving outcomes for patients and alleviating pressure on already strained health systems. A proactive shift toward prevention and sustained disease management is urgently needed. Hospitalizations and the growing financial burden on health systems Global COPD expenditures are projected to reach €3.7 trillion by 2050, with 45-70% of these costs linked to managing exacerbations. Comparatively, EU governments spent €1.25 trillion on healthcare overall in 2023, implying an increasing cost burden related to COPD in the coming years.12,13,14 Remarkably, approximately 70 percent of the total costs associated with treating COPD stem directly from hospital stays.15 Collaborative efforts such as the Joint Action on Chronic Respiratory Diseases (JARED) and the MEP Lung Health Group are crucial for driving policy changes and improving COPD management across the EU. > Policymakers increasingly see COPD as a driver of hospital admissions: 41 > percent now rank it among the top three causes of hospital admissions in their > country behind only heart disease and stroke — a sharp rise from 8 percent in > 2022.16 Although this awareness is rising, so are the costs. In Europe, the estimated annual medical cost of COPD ranges from €1,963 to over €10,701 per person among adults aged 45 years and older, depending on disease severity. COPD-related hospitalizations are 2-3 times more expensive than other disease-related hospitalizations.17,18,19 This is primarily driven by longer stays, higher rates of intensive care unit use, a greater need for post-discharge support, and increased risk of readmissions, reflecting the complex and resource-intensive nature of managing exacerbations. Current COPD management focuses on symptom control, often overlooking the critical need to reduce exacerbations and hospitalizations. Prioritizing early intervention and prevention: A call to action While the challenges posed by COPD are significant, there is an opportunity to take decisive action. By implementing concerted, consistent and coordinated efforts to tackle COPD in a systemic way, we can mitigate its impact and improve patient outcomes. We can lead in this area, setting a standard for proactive COPD management and demonstrating the value of investing in early intervention and prevention.   To address the multifaceted patient and health system costs of COPD, a shift toward proactive strategies is essential. There are already promising initiatives of such strategies being implemented across Europe, such as national lung health programs that emphasize early diagnosis in primary care settings and integrated vaccination programs for at-risk adults, demonstrating that progress is within reach through collaboration and shared learning. Complementing these systemic efforts, patient engagement is a crucial component in effective COPD management. When patients are engaged and actively involved in their care, they are better equipped to recognize worsening symptoms and seek timely help. Tools like the COPD Exacerbation Recognition Tool play a vital role by increasing patient awareness of early signs and empowering them to respond quickly, potentially reducing the severity of flare-ups and avoiding costly hospitalizations.20 Shifting the system from reactive crisis care toward proactive, preventative approaches and early intervention is what ultimately may keep more people out of hospital. A lot of progress has been made on prioritizing the ongoing burden of COPD, but there is more to do. It’s time that we rethink our approach to care and ask ourselves, what more can we do to truly support patients and national healthcare systems? At GSK, we believe in working across the healthcare ecosystem and with governments to learn from one another, support new innovation, and build a system that prioritizes early intervention and prevention of unnecessary exacerbations and hospitalizations. It is our collective responsibility to act now. This should be seen not just as a medical imperative, but as a strategic investment in healthy populations and economic stability. November 2025 NP-GBL-CPU-WCNT-250002 -------------------------------------------------------------------------------- 1. Boers E, Barrett M, Su JG, et al. Global Burden of Chronic Obstructive Pulmonary Disease Through 2050. JAMA Netw Open. 2023 Dec 1;6(12):e2346598. doi: 10.1001/jamanetworkopen.2023.46598. 2. Benjafield A, Tellez D, Barrett M, et al. An estimate of the European prevalence of COPD in 2050. European Respiratory Journal 2021;58(suppl 65):OA2866; doi: DOI: 10.1183/13993003.congress-2021.OA2866. 3. Khakban, Amir et al. “The Projected Epidemic of Chronic Obstructive Pulmonary Disease Hospitalizations over the Next 15 Years. A Population-based Perspective.” American journal of respiratory and critical care medicine vol. 195,3 (2017): 287-291. doi:10.1164/rccm.201606-1162PP. Accessed April 2025. 4. Organisation for Economic Co-operation and Development. (2022). Health at a glance: Europe 2022. OECD Publishing. https://doi.org/10.1787/507433b0-en 5. Rehman, M., et al. (2021). Cost analysis of chronic obstructive pulmonary disease (COPD): a systematic review. Health Economics Review, 11 : 31. https://doi.org/10.1186/s13561-021-00329-9. 6.WHO. Fact Sheet: Chronic obstructive pulmonary disease (COPD). Accessible at: https://www.who.int/news-room/fact-sheets/detail/chronic-obstructive-pulmonary-disease-(copd) [last accessed October 2025] 7. Sin DD. Should COPD stand for “comorbidity-related obstructive pulmonary disease”? Eur Respir J. 2015;46(4):901-2. doi: 10.1183/13993003.01112-2015 8. Serra-Picamal X, Roman R, Escarrabill J, et al. Hospitalizations due to exacerbations of COPD: A big data perspective. Respir Med. 2018;145:219-225. doi: 10.1016/j.rmed.2018.01.008 9. Suissa S, Dell’Aniello S, Ernst P. Long-term natural history of chronic obstructive pulmonary disease: severe exacerbations and mortality. Thorax. 2012;67(11):957–963. doi: 10.1136/thoraxjnl-2011-201518.  10. Melles, M.C., et al. “The cost impact of informal care for patients with COPD and exacerbations in the Netherlands.” American Journal of Respiratory and Critical Care Medicine, vol. 211, no. Abstracts, May 2025, https://doi.org/10.1164/ajrccm.2025.211.abstracts.a3256. 11. PMC, Europe. Europe PMC, europepmc.org/article/PMC/4334315. Accessed 31 Oct. 2025. 12. Chen S, Kuhn M, Prettner K, et al. The global economic burden of chronic obstructive pulmonary disease for 204 countries and territories in 2020-50: a health-augmented macroeconomic modelling study. Lancet Glob Health. 2023;11(8):e1183-e1193. doi: 10.1016/S2214-109X(23)00217-6 13. Koff PB, Min SJ, Freitag TJ, et al. 2021. Impact of Proactive Integrated Care on Chronic Obstructive Pulmonary Disease. Chronic Obstr Pulm Dis 8(1): 100-16 14. Government Expenditure on Health – Statistics Explained – Eurostat, ec.europa.eu/eurostat/statistics-explained/index.php?title=Government_expenditure_on_health. Accessed 31 Oct. 2025. 15. Hunter LC, Lee RJ, Butcher I, et al. Patient characteristics associated with risk of first hospital admission and readmission for acute exacerbation of chronic obstructive pulmonary disease (COPD) following primary care COPD diagnosis: a cohort study using linked electronic patient records. BMJ Open. (2016) 6:e009121. 16. Ipsos (2025) Data on file: Global Policymakers’ Perspectives on COPD | Survey of Attitudes and Perceptions – Wave 2 Final Report (conducted on behalf of Global Allergy and Airways Patient Platform). 17. Rehman AU, Hassali MAA, Muhammad SA, et al. The economic burden of chronic obstructive pulmonary disease (COPD) in Europe: results from a systematic review of the literature. Eur J Health Econ. 2020;21:181–94. 18. Agarwal D. COPD generates substantial cost for health systems. Lancet Glob Health. 2023;11:e1138-9. 19. Løkke A, Lange P, Lykkegaard J, et al. Economic Burden of COPD by Disease Severity – A Nationwide Cohort Study in Denmark. Int J Chron Obstruct Pulmon Dis. 2021;16:603-613. doi: 10.2147/COPD.S295388 20. Jones PW et al. (2022). The Development of a COPD Exacerbation Recognition Tool (CERT) to Help Patients Recognize When to Seek Medical Advice. International Journal of Chronic Obstructive Pulmonary Disease, 17, 213‑222. DOI: 10.2147/COPD.S337644. --------------------------------------------------------------------------------

President Donald Trump’s deep cuts to foreign aid and plans to quit the UN body that coordinates efforts to combat disease are already splintering a global approach to public health strained by a once-in-a-century pandemic. Picking up the pieces is Tedros Adhanom Ghebreyesus’ job. Facing the loss of his biggest funder when the U.S. officially withdraws in January — America’s contribution was $640 million in 2023, the most recent year for which data is available — the World Health Organization’s director-general is trying to appeal to Trump. He’s fundraising and has launched the largest downsizing in the body’s history. He’s also warning the world that retreating from health cooperation right after a pandemic swept the globe doesn’t make any sense. He says the sudden aid cuts this year have cost lives. “If donors or others also see that what they give is no charity and it’s a security for everybody, I think we’ll be in a better situation,” Tedros told POLITICO. At the same time, he’s also found a silver lining that sounds like something he and Trump could agree on: America’s aid cuts are pushing countries that have depended on U.S. funding to become more self-reliant. The first African head of the WHO, Tedros has led the organization since 2017, including through the turmoil of Covid, two mpox outbreaks and yearslong negotiations on an international agreement aimed at improving the world’s response when the next pandemic comes. This year he’s had to reorganize the WHO leadership and let go of some 600 people out of roughly 10,000 employees after losing U.S. funding. Tedros outlined for POLITICO his efforts to address Trump’s complaints of “inappropriate political influence” at the WHO and “onerous payments,” and explained how he’s engaging Trump officials to get the administration to reconsider its withdrawal. This interview has been edited for length and clarity. How does the world move forward after the funding cuts and U.S. withdrawal? Solidarity is important, because unless we support each other, viruses could get an advantage. It’s not charity. By investing in it, countries are protecting themselves. On top of that, though, self reliance is also important, and each and every country should invest in health. If countries take ownership, I see a better future. Covid-19 has killed more people than any war in recent memory. We have to protect ourselves from a common enemy that can strike any time. It’s a matter of when, not if. Trump, Republicans and many global health experts say some countries have become dependent on the U.S. and the cuts will force them to become self-reliant. So were the cuts a good thing? It’s a good thing and it’s a bad thing. It’s a bad thing because people are dying. It’s a good thing for the long term, because countries are now waking up and saying: ‘OK, I have to mobilize domestic resources, and I have to cover the expenses for the health system.’ Of course, there is the immediate impact. If there was a transition, it would have been better to avoid the impact of the service cuts now in terms of morbidity or mortality. How have you engaged with the Trump administration and how did that go? We have done that formally, informally, because we think informal is more effective. And we ask for meetings, but for reasons they don’t tell us, it hasn’t happened yet. I’m not saying the door is closed. We’re in touch with [Health Secretary] Bobby Kennedy. He helped us in evacuating kids from Gaza. The president supported it. There are some kids who came here and many to other countries, especially kids with cancer. I would like to thank the president for the peace deal and also for helping kids with cancer in the evacuation. We have already reached more than 300 kids. Kennedy has said the WHO needs “radical reform.” Have you talked to him about what reforms he wants? We don’t know what kind of reform they want, but the U.S. says other countries should pay and they want to pay less. We agree. The WHO wants the U.S. and other major donors to pay less because we want the burden to be shared. We started the finance reform in 2017. In 2022, our member states, including the U.S., agreed to increase the assessed contributions by 50 percent. The largest increase in the past was 3 percent. And that helps the WHO prevent shocks like these in the future, and also to be more independent. And that, I think, is what the U.S. also wants, for the WHO to be independent. So if that’s what they want, then we’re doing it. So is this a good reason to leave? No. Trump administration officials have accused the WHO of being too close to China and helping it cover up the origins of Covid. Have you had conversations with Kennedy or other Trump officials about it? It’s outright wrong. I don’t know if people know that China is not happy with the position that we have on Covid’s origins, because our position is that all hypotheses are on the table, including spillover and lab leak. This position is very similar to the United States’. Based on science and evidence, actually, that’s the conclusion you can have. But when people don’t want to see what exactly are the facts and are interested in spreading misinformation and disinformation, what can you do? Are you worried other countries could follow the U.S. out of the WHO? I’m not worried that much. There are good reasons to stay, even for the U.S.

LONDON — American pharmaceutical giants will start to shutter their U.K. operations unless Keir Starmer’s government agrees to pay more for their drugs, U.S. Ambassador to the U.K. Warren Stephens warned ministers on Wednesday. “The U.K. needs to continue addressing its pricing structures for medicines to ensure it can compete for investment from U.S. firms,” Stephens told a U.K.-U.S. business gathering in central London attended by British trade and foreign ministers. “If there are not changes made, and fast, pharma businesses will not only cancel future investments, they will shut down their facilities in the U.K.,” the diplomat said. “This would be a major blow to a country that prides itself, rightly so, on its life sciences sector.”  The U.K. is locked in drug-pricing negotiations with the Trump administration and pharmaceutical firms about how much the National Health Service pays for their products through the so-called Voluntary Scheme for Pricing, Access and Growth (VPAG) scheme. Britain has offered to increase the threshold at which the NHS pays firms for medicines by up to 25 percent, POLITICO first reported in October. But pharmaceutical executives are pushing the government to go further. American drugmaker Eli Lilly’s international business chief said on Monday that it wants to see more changes to Britain’s medicine market before it pivots on its abandoned £279 million investment in a biotech incubator project. “I don’t think we have heard enough to say that we are willing to get the Lilly Gateway Lab started,” Patrik Jonsson, president of Lilly’s international business, which covers all markets outside the U.S., told POLITICO. The focus of talks has turned to the government’s “clawback” system, where firms have to pay back part of their revenue if the total amount the NHS spends on drugs rises above a certain cap. Unless ministers agree to also raise that cap, any extra NHS spending will mean a larger clawback bill for pharma companies. Pricing talks feature in the U.K.’s ongoing trade negotiations with Washington after Starmer struck a framework trade deal with Trump in May, promising to “improve the overall environment” for pharmaceutical firms operating in Britain. U.K. negotiators are currently in Washington and “progress is being made on this literally as we speak,” Stephens said, adding he hopes “that will yield some success.”  The U.K.’s “chief obstacle” to growth is also its high energy costs, Stephens added. “If there are not major reforms to U.K. energy policy, then the U.K.’s position as a premier destination in the global economy is vulnerable.”  Britain’s Labour government is “completely signed up to an ambitious agenda for business,” said Trade Minister Chris Bryant, in an address following Stephens’ speech. He set out how the government plans to “integrate” its industrial, small business and trade strategies to grow the economy.