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.

It could have been the ominous cold open to a classic Bond film. The Russian and Chinese leaders caught on a hot mic at a Beijing military parade, casually musing about cheating death. “With the development of biotechnology, human organs can be continuously transplanted and people can live younger and younger, and even achieve immortality,” Russian leader Vladimir Putin told Chinese ruler Xi Jinping, his tone half clinical, half conspiratorial. “Predictions are that this century, there is a chance of living to 150,” Xi replied. But this wasn’t a scriptwriter’s villainous fantasy. It was a jaw-droppingly real exchange between two of the world’s most powerful, heavily armed leaders. While it may have sounded absurd, behind palace walls, the obsession with longevity is more than idle chatter. The Russian and Chinese leaders were caught on a hot mic at a Beijing military parade, casually musing about cheating death. | Pool photo by Alexander Kazakov/AFP via Getty Images In 2024, the Kremlin ordered scientists to fast-track anti-aging research on cellular degeneration, cognitive decline and the immune system. Meanwhile, China has also been pouring resources into exploring nanotechnology-delivered hydrogen therapy and compounds such as betaine and lithocholic acid, hoping to slow down aging and extend healthy lifespans. But even as the world’s autocrats fantasize about replacing body parts like car tires, the science remains far less accommodating. James Markmann, executive council president at the American Society of Transplant Surgeons, called Xi and Putin’s idea of living to 150 through transplants “unfounded.” “There is currently no evidence suggesting that living to 150 years of age is possible through organ transplantation,” Markmann said. “While there is much interest in related research and some progress in intervening in the aging process, there is no evidence that a 150-year lifespan can currently be achieved.” While organ transplantation can and does save lives, there’s no data that it can also slow or reset an individual’s biological clock, Markmann said. Replacing a single organ, or even several, may improve health temporarily, but it cannot halt the overall aging process of the body. “The concerning idea here is that there is a surplus of organs available that can consistently be replenished for a single individual to prolong their life; this is simply not the case,” Markmann said. THE OLDEST OBSESSION The Xi-Putin exchange didn’t happen in a vacuum. History is littered with rulers who believed they could outsmart death. Qin Shi Huang, China’s first emperor, swallowed mercury pills in pursuit of eternal life, a habit that eventually killed him. Egyptian pharaohs mummified themselves for eternity, Cleopatra dabbled in youth potions and medieval alchemists peddled elixirs. By the 20th century, Russia’s last czar, Nicholas II, and Empress Alexandra were consulting Rasputin and other mystics for advice on health and longevity. Today, the same quest has migrated to Silicon Valley, where the mega-rich pour fortunes into cryonics, anti-aging biotech and “biohacking” in the hope of buying more time. According to Elizabeth Wishnick, an expert on Sino-Russian relations and senior research scientist at the Center for Naval Analyses (CNA), a non-partisan research and analysis organization, this fixation is typical of the world’s wealthiest and most powerful. “They want to go into outer space, they want to go underwater … the human body for them is just another frontier,” she told POLITICO. “It’s logical for people who don’t feel limits to try to extend those boundaries.” But there’s a stark contrast close to home. Life expectancy in Russia remains just over 73 years, while in China, it hovers around 79 years, with access to healthcare being deeply unequal. In Wishnick’s view, Xi and Putin “would do better to focus on that, but instead their focus seems to be on their own longevity, not the health of their societies.” UNFINISHED BUSINESS There’s also a significant cultural dimension agitating Xi and Putin. Robert Jay Lifton, the American scholar who coined the term “symbolic immortality,” argued that humans invent religions, nations and political legacies as ways of cheating death. Xi’s mantra of “national rejuvenation” and Putin’s mission to restore a “great Russia” fit neatly into that framework — even if they can’t physically live forever. “Both of them are really hostage to their own propaganda,” said Wishnick. “They truly believe they are the only leaders who can do the job. They’re concerned about their legacy and how they’ll be remembered in history.” That, she said, helps explain their obsession with reclaiming “lost” territories — Taiwan for Beijing; Ukraine for Moscow — as if completing unfinished maps might also complete their historical destinies. Qin Shi Huang’s attempt at immortality, the Terracotta Army, still stands today. | Forrest Anderson/Getty Images They’ve made creeping moves toward that goal domestically. Xi has upended China’s tradition of leadership turnover to maintain his dominance, while Putin has dismantled elections and eliminated rivals until only he remains. “It’s not surprising they would look to science as a way of extending that,” Wishnick added. While the scientific limitations persist, immortality will — at least for the time being — remain tied to public consciousness and memory. See, for example, Qin Shi Huang’s Terracotta Army, which still stands, or Russia’s expansionist czar, Peter the Great, an 18th-century leader who inspires Putin even today. But even in a world of nanotech and organ swaps, immortality has a catch: you still have to live with yourself. And for the world’s Bond villains, that might be the cruelest sentence of all.

The European Union is gearing up to relax the rules around what sort of cancer-causing chemicals are allowed in cosmetics, in a red-tape slashing exercise that consumer groups warn could put people’s health at risk. In a draft proposal and accompanying document obtained by POLITICO, the European Commission proposes simplifying a set of EU chemical laws spanning cosmetics, fertilizer and chemical classification regulations in a “chemicals omnibus” bill. Along with tweaking rules around carcinogens in cosmetics, it would also simplify laws on advertising and labeling hazardous chemicals, requiring producers to put less precise information in ads and on the front of certain packaging. The proposal, which aims to create a “more predictable and less burdensome regulatory landscape,” is part of the EU’s broader simplification drive aimed at reducing “undue burden” on companies to help Europe’s businesses and boost the economy. The draft bill includes tweaks to the Cosmetic Products Regulation (CPR), a law governing the safety of cosmetic products. Under the CPR, substances that are carcinogenic, mutagenic — i.e. capable of changing genetic material — or toxic for reproduction are broadly banned in cosmetics with some exceptions in specific circumstances. The proposed revision will keep to that principle and derogations from the ban will still have to be assessed and found safe by the Scientific Committee on Consumer Safety. But there are new caveats. If a substance only has those properties when inhaled or digested, for example — but not if it comes into contact with the human skin — it shouldn’t be automatically banned from use in cosmetics. Also, companies will no longer have to prove compliance with food safety requirements to receive a derogation for a substance. Food and cosmetics are “distinct products,” the Commission argues, and just because a product contains an inedible substance doesn’t mean that same chemical won’t be safe when used in a cosmetic formula to be applied on human skin. ‘A CONCERNING DIRECTION’ But the tweaks have not found favor among environmental and consumer groups. “The simplification proposal is taking a concerning direction for consumer protection by extending the use of cancer-causing chemicals in cosmetics,” said Pelle Moos, senior advisor for the European Consumer Organisation, in an emailed statement. “Not only does this clash with consumers’ legitimate expectations to use safe products but also with the Commission’s commitment to maintain high standards of protection.” He called on the Commission to “reconsider and safeguard public health and consumer safety.” Cosmetics Europe’s director general John Chave declined to comment on the leaked document specifically, but stressed that the CPR “remains the international regulatory benchmark for safety” and that his industry “needs to ensure that our products are safe” as a “sacrosanct” principle. Still, he added, the current process allowing companies to get exemptions for chemicals from the automatic CPR ban “does not always allow the industry to demonstrate safety, for example because of vague criteria, or unrealistic deadlines.” “This can stop us from using substances which have been scientifically assessed as perfectly safe for use in cosmetics.” The omnibus would also simplify rules on how to classify, label and package chemicals under the Classification, Labelling and Packaging Regulation — which only entered into force in December. As previously reported by POLITICO, the proposal suggests loosening formatting, labeling and advertising requirements for hazardous chemicals. Originally, for example, the rules stipulated that any advertisement for hazardous substances must indicate the necessary hazard symbols and statements, on top of the statement: “Always follow the information on the product label,” for adverts to the general public. That would all be replaced by a simple sentence for adverts to the general public: “Always read the label and product information before use.” ClientEarth legal expert Julian Schenten said the Commission’s plans to revise its chemical classification, labeling and packing rules put “business interests ahead of people’s health and environmental safety.” Part of the Commission’s justification for doing away with certain labeling rules lies in reducing paper use for environmental reasons, which Schenten described as “absurd.” “Let’s be clear: cutting paperwork does not make toxic products any safer,” he added. “The reduction of administrative burden on companies should lead to societal gains in terms of wealth creation, employment and innovation,” argues the Commission in the draft document. “At the same time, the proposal seeks to ensure a high level of protection of human health and of the environment.” The chemicals omnibus — alongside an “action plan” for Europe’s struggling chemicals industry — is now expected July 8.

Sweden and Belgium want to discuss an EU limit on the number of children conceived from a single sperm donor — to prevent future generations from unwitting incest and psychological harms. Donor-conceived births are rising across Europe as fertility rates decline and assisted reproduction becomes more widely accessible — including for same-sex couples and single women. But with many countries struggling to recruit enough local donors, commercial cryobanks are increasingly shipping reproductive cells known as gametes — sperm or egg — across borders, sometimes from the same donor to multiple countries. Most EU countries have national limits on how many children can be conceived from one donor — ranging from one in Cyprus to 10 in France, Greece, Italy and Poland. However, there is no limit for cross-border donations, increasing the risk of potential health problems linked to a single donor, as well as a psychological impact on children who discover they have dozens or even hundreds of half-siblings.  Sweden, backed by Belgium, is raising the topic with EU ministers on Friday, with hopes of preventing future generations from dating half-siblings and reducing risk of heritable diseases. “This issue has been left unresolved for too long,” an official from Belgium ,granted anonymity to speak freely, told POLITICO, adding that an “international limit is a first step in the right direction.” A limit would prevent high numbers of children conceived from the same donor, reducing risks of hereditary diseases and half-siblings unknowingly getting together. “We don’t want genetic half siblings to … start families,” Carolina Östgren, research officer at the Swedish National Council on Medical Ethics, told POLITICO.  Sweden’s ethics council started looking into the issue in 2023, following an article published in newspaper Dagens Nyheter, which reported that Swedish clinics are selling donated sperm abroad resulting in one donor potentially fathering more than 50 children. In Sweden, each donor can only provide donations to six couples. However, there are no restrictions on how many children a donor may father across different countries. And the clinics are using this to go beyond the national limits.  BOOMING BUSINESS, GROWING RISKS Some cryobanks — sperm and egg banks — set their own voluntary limit for the maximum families or children per donor. The fertility clinic in the Dagens Nyheter article had a voluntary cap of 25 families worldwide per donor; however, while the donors were informed about the exports, many recipient parents didn’t know their children could have up to 50 half-siblings. Most EU countries have national limits on how many children can be conceived from one donor. | Andreas Arnold/Picture Alliance via Getty Images A recent case —  a donor with a rare cancer-causing gene whose sperm was used to conceive at least 67 children, 10 of whom have since been diagnosed with cancer — “is another example of why we have to regulate this on an international level,” Östgren said.  A spokesperson for the European Sperm Bank, one of the bloc’s largest cryobanks providing sperm and egg donations to 80 countries, told POLITICO that donors go through extensive health checks and family history reviews. From a medical perspective, choosing a donor is generally safer than conceiving naturally, the spokesperson argued. However, those screenings would not have detected the cancer-causing TP53 gene mutation that was carried by the donor.  “You can never be 100% sure of detecting everything,” Peter Reeslev, head of Denmark-based Fertility Consultancy, which provides international advice to fertility clinics, said in a written response. “Centralised registry can support and limit donor number of offspring, but imagining no illnesses will occur among donor conceived children is naïve.” “We can’t do whole-genome sequencing for all sperm donors — I’m not arguing for that,” Edwige Kasper, a biologist at Rouen University Hospital in France, who presented the cancer-risk donor case at the annual conference of the European Society of Human Genetics in Milan told The Guardian. “But this is the abnormal dissemination of genetic disease. Not every man has 75 children across Europe.” On average a European man has one to two children. But through donations, the number can rise as high as 550 children, as in the case of a Dutch sperm donor who has been banned from further donations. MIND THE CAP! Cryobanks warn that overly strict limits could reduce supply, which is already running short. The European Sperm Bank argued that only 3-5 percent of men who begin the selection process are approved, warning that if family limits are set too low this would drive up screening costs and wait times, potentially pricing out would-be parents. Cryobanks use one donor for conceiving as many children as possible, because the unit cost is lower, Östgren said. The European Sperm Bank caps the number of would-be parents that can use one donor at 75, allowing one donor to potentially father hundreds of children. Its price for a single-use sperm vial varies from around €700 to €1,100. But this bank also offers prospective parents the chance to opt for an exclusive donor — meaning no other families will ever receive their sperm. But it comes at a cost. Screening fees would be distributed across fewer families which would increase the price, the European Sperm Bank said in written response, without giving a value.  But that logic doesn’t fly with ethicists. “You cannot say that it’s cheaper, and that’s why we should do it,” Östgren said. “We must think of other factors than the business logic here.” The concerns also go beyond hereditary health risks and possible incest. Thanks to the rise of consumer DNA testing and social media, donor-conceived individuals are now discovering dozens — sometimes hundreds — of genetic half-siblings worldwide.  “The psychological impact of discovering that you have dozens of half-brothers and sisters in Europe or even the wider world carries a huge impact,” the Belgian official said. “The world is getting smaller and smaller. People look for each other, find each other faster.” Fertility consultant Reeslev agreed that “due to changes in communicational platforms and transparency e.g. DNA testing, the time has come for a sperm donor limit on a European level.” In some countries, the donor’s identity is kept secret unless the child experiences severe health conditions. Other countries allow donor-conceived children to know who the donor is from a certain age, ranging from 15 to 18 years. Some, such as Denmark, allow the donor to choose whether to be anonymous or open.  Belgium wants to erase the anonymity option. “We also advocate (for) a European central donor register and support the removal of anonymity,” the official said. “This is about the right of the child to know their parentage.” THE CASE FOR EU ACTION To raise attention of the issues in March this year Sweden, together with ethics councils from Norway, Finland and Denmark, published a joint report, calling for the EU discuss issues around international donations.  Donor-conceived births are rising across Europe as fertility rates decline and assisted reproduction becomes more widely accessible. | Lee Sanders/EPA Their call has been heard.  “We’re really happy that they are taking this seriously and discussing it on the broader level, on the European level,” Östgren said.  The European Sperm Bank is also hoping the ministerial discussion will lead to a harmonized cap on the number of families per donor and the establishment of a central EU donor registry to ensure long-term traceability and secure access to vital donor information.  That’s because the EU’s new regulation on substances of human origin, which will apply from 2027, while a step toward harmonizing currently widely varying rules and standards, doesn’t introduce a bloc-wide family limit and central donor registry. In the meantime Östgren believes an EU decision would be a first step toward worldwide guidance. “Sperm is exported … in the whole world,” Östgren said.

On the flat plains of central Poland, where densely packed poultry sheds crowd the landscape, the future of Europe’s meat industry hums to the rhythm of millions of broiler chickens. Inside, birds bred to grow at record speed shuffle under the constant glow of artificial light, each one a copy of the last. They live fast, grow faster and end their lives in industrial kill lines — destined for export to Germany, the U.K. and Saudi Arabia. Chicken isn’t just dinner. Here — and across much of the world — it’s a policy choice. From Brussels to Brasília, policymakers have long championed poultry as a “transition meat” — a pragmatic alternative to climate-intensive beef. Chicken is lower-emission, relatively affordable, scalable across global markets and often promoted as a leaner, lower-fat option compared with pork or beef. In political shorthand: the least-worst option. But as a fresh wave of highly pathogenic avian influenza, also known as bird flu, sweeps across continents — killing hundreds of millions of birds, infecting some mammal species and prompting sweeping lockdowns — the virus is edging closer to spilling over into humans. That is putting the poultry playbook under stress. In the U.S., more than 90 million birds have been culled over the past year. In Poland, the hardest-hit EU country, over 11.5 million were culled in the first months of 2025 to stop the disease from spreading. Behind those numbers lie deeper dilemmas: ethical shortcuts, epidemiological risk and a protein system optimized for speed, not resilience. BRUSSELS CLAMPS DOWN ON THE COOP The European Commission moved in early April to expand protection zones and tighten biosecurity rules in Poland, which alone accounted for some 80 of the EU’s 200 confirmed outbreaks of highly pathogenic bird flu this year. The Commission had warned that Poland’s initial response posed a risk to biosecurity in the EU’s borderless internal market and threatened measures that would have effectively shut down all exports from the country. Under pressure from Warsaw, Brussels stepped back from its toughest proposals, but not without conditions: The Commission asked the Polish authorities to present an “action plan” to contain the virus, which it agreed to monitor closely. Commission food safety spokesperson Eva Hrnčířová emphasized that the response was “not something about Poland without Poland,” noting that the agreed measures were drawn up “together with the Polish national and regional authorities” and “based on information from Poland.” The aim, Hrnčířová added, was “to create protection rather than restriction.” What’s notable is where that plan came from. As Polish Agriculture Minister Czesław Siekierski explained in a radio interview, the proposed measures — including containment zones and limits on introducing new flocks, but no halt to production or exports — came from the poultry industry itself and were then adopted by the government. The plan was formally endorsed by Poland’s chief veterinary officer and submitted to Brussels as the country’s official response. “This was a proposal from the producers,” Siekierski said. “And it was passed to Brussels as our official position.” Siekierski has repeatedly defended the sector’s symbolic and economic role, calling it “the flagship of Polish agriculture.” But he also acknowledged: “The problem of avian influenza in Poland cannot be solved without bearing some costs — but what matters is finding systemic solutions.” No EU country has more at stake. Once a modest agricultural player, Poland is now the bloc’s poultry powerhouse — responsible for nearly one in five chickens produced and a third of all exports. The sector supports hundreds of thousands of jobs and sends more than half its output abroad. Its rise was turbocharged by industrial scale and genetic homogeneity. Most Polish broilers come from a few breeds that reach slaughter weight in just five weeks. That efficiency is driven by tight vertical integration: Major poultry companies control nearly every stage of production — from breeding and feed mills to slaughterhouses and export. The result is a high-performing machine, but also a house of cards. Nearly half of Poland’s poultry is produced in just two regions, Wielkopolskie and Mazowieckie, where farms sit tightly packed. Poland’s chief veterinary officer, Krzysztof Jażdżewski, recently admitted that “chicken houses built on top of each other” create ideal conditions for the virus to spread. And when the virus gets in, the consequences escalate quickly. Most of the millions of birds being culled aren’t actually sick. But in a system built for maximum output, the detection of even a single infection can mean killing entire sheds — sometimes hundreds of thousands of birds at once. The logic is brutally simple: slaughter the whole flock to stop the virus from jumping to the next farm. Biosecurity enforcement remains patchy. Jażdżewski has warned of a shortage of trained veterinary inspectors, saying: “We have a problem with boots on the ground.” Basic safeguards like disinfecting equipment and securing feed supplies aren’t always applied consistently. But even perfect biosecurity may not be enough. One state-affiliated epidemiologist, who was not authorized to speak on the record, told POLITICO that the system’s design allows outbreaks to escalate rapidly. “When a virus like this lands in a region with high farm concentration, it’s like throwing a spark into a powder keg,” they said. Once inside, it spreads through trucks, equipment, clothing — even dust and feathers carried by the wind. This epidemiologist noted that while there have been discussions about limiting how closely farms can be sited, “the law doesn’t work backward” — meaning existing clusters would likely remain. INDUSTRY DEFENDS THE MODEL Poland’s poultry industry rejects the idea that the system’s scale or structure is to blame. In a written response to POLITICO, the National Poultry Council argued that outbreaks are primarily driven by wild birds — not farm density. The group also pushed back against suggestions that producers should shoulder more of the costs, insisting that poultry businesses already invest heavily in biosecurity and that “professional, economically strong farms are precisely those best positioned” to uphold standards. The EU-wide industry group AVEC struck a similar tone, telling POLITICO that production at scale “does not necessarily increase” the risk of large-scale outbreaks. It emphasized that keeping birds indoors, as is common in conventional systems, helps minimize contact with wild birds. Some industry representatives go further. “We cannot agree to let irresponsible producers repeatedly expose the whole poultry sector to losses,” said Paweł Podstawka, head of the Polish Federation of Poultry Farmers and Egg Producers, in comments to Polish media. He called for licensing poultry farming as a profession. While welcoming the deal with Brussels, he warned: “If we don’t improve, there won’t be any leniency next time.” Major poultry companies control nearly every stage of production — from breeding and feed mills to slaughterhouses and export. | Rehan Khan/EPA Other European countries have faced similar risks — but not on Poland’s scale. France, once the EU’s epicenter for avian influenza, has recorded just a single farm outbreak this year. In Germany and the Netherlands, most cases have been among wild birds, with only sporadic infections on farms. THE GEOPOLITICS OF CHICKEN Supporters of the poultry-first strategy emphasize the climate calculus. Compared with beef, chicken emits up to 90 percent less CO₂ per kilo of protein. It also uses far less water and land.  The World Bank now touts chicken as a climate asset — one of the least polluting animal proteins and a tool for reducing food system emissions. But those environmental gains come with trade-offs. Male chick culling, still widespread outside Germany and France, sees hundreds of millions of baby birds killed each year for being unprofitable. The dominant broiler breeds have been called “ticking time bombs,” prone to chronic pain and heart failure. Antibiotic resistance, driven in part by prophylactic use, looms as a largely unspoken crisis. In 2023, the U.N.’s Food and Agriculture Organization described poultry and eggs as essential to human health, especially in low-income contexts. But just two years later, the same agency is raising the alarm. As H5N1 mutates and spreads to mammals — including dairy cows and wild carnivores — the agency has warned of “serious impacts” on food security and public health. The growing ability of the virus to jump species has reignited fears of a zoonotic leap to humans. “This is more than an agricultural crisis,” FAO Deputy Director General Beth Bechdol said in March. “The uncontrolled spread of avian influenza and other zoonotic diseases pose serious risks to global health, to human health, to economic stability — just as we have seen with Ebola and other human pandemics.” THE SYSTEM HOLDS — FOR NOW Change, if it comes, won’t be painless. Synthetic, or lab-grown, meat remains years from mainstream approval. Plant-based alternatives are stagnating. There’s no clear successor to chicken on the protein horizon, giving the poultry lobby staying power and broiler chickens time to keep growing. The deal between Warsaw and Brussels remains shaky. An EU veterinary mission visited Poland in late April to assess whether the action plan is being enforced — and whether it’s working. A final report is expected in the coming weeks. A negative verdict could trigger new restrictions. Several scientists echoed concerns that it’s not wild birds or lapses in hygiene, but the industrial model itself that makes outbreaks hard to contain — whether in Poland, the Netherlands or the U.S. “If consumers were willing to pay more, the industry could afford to reduce intensity. But as long as price pressure rules, production stays big, dense — and risky,” said Lars Erik Larsen, a leading Danish virologist at the University of Copenhagen. Even top-tier biosecurity can fail, he warned: “Somebody will always make a mistake — and once the virus gets into these dense systems, it spreads fast.” While vaccination is often floated as a solution, it’s no silver bullet. Vaccines reduce symptoms but don’t always block transmission — meaning the virus may still circulate silently in flocks. The U.N.’s Food and Agriculture Organization described poultry and eggs as essential to human health. | Caroline Brehman/EPA Even Siekierski now seems to grasp how fragile the system has become. Over the weekend, he posted candidly on social media: Producers hit by outbreaks get generous compensation; those spared enjoy high prices. “Who pays for this? The state budget,” he wrote, noting that the ministry had burned through its annual biosecurity funds by March. “That’s why I believe it’s time to seriously start an agricultural transformation,” he added. “TOGETHER. But that, of course, is the hardest part …”

‘PARKINSON’S IS A MAN-MADE DISEASE’ Europe’s flawed oversight of pesticides may be fueling a silent epidemic, warns Dutch neurologist Bas Bloem. His fight for reform pits him against industry, regulators — and time. Text and photos by BARTOSZ BRZEZIŃSKI in Nijmegen, Netherlands Illustration by Laura Scott for POLITICO In the summer of 1982, seven heroin users were admitted to a California hospital paralyzed and mute. They were in their 20s, otherwise healthy — until a synthetic drug they had manufactured in makeshift labs left them frozen inside their own bodies. Doctors quickly discovered the cause: MPTP, a neurotoxic contaminant that had destroyed a small but critical part of the brain, the substantia nigra, which controls movement. The patients had developed symptoms of late-stage Parkinson’s, almost overnight. The cases shocked neurologists. Until then, Parkinson’s was thought to be a disease of aging, its origins slow and mysterious. But here was proof that a single chemical could reproduce the same devastating outcome. And more disturbing still: MPTP turned out to be chemically similar to paraquat, a widely used weedkiller that, for decades, had been sprayed on farms across the United States and Europe. Advertisement While medication helped some regain movement, the damage was permanent — the seven patients never fully recovered. For a young Dutch doctor named Bas Bloem, the story would become formative. In 1989, shortly after finishing medical school, Bloem traveled to the United States to work with William Langston, the neurologist who had uncovered the MPTP-Parkinson’s link. What he saw there reshaped his understanding of the disease — and its causes. “It was like a lightning bolt,” Bloem tells me. “A single chemical had replicated the entire disease. Parkinson’s wasn’t just bad luck. It could be caused.” THE MAKING OF A MAN-MADE DISEASE Today, at 58, Bloem leads a globally recognized clinic and research team from his base at the Radboud University Medical Center in Nijmegen, a medieval Dutch city near the German border. It treats hundreds of patients each year, while the team pioneers studies on early diagnosis and prevention. The hallway outside Bloem’s office was not hectic on my recent visit, but populated — patients moving slowly, deliberately, some with walkers, others with a caregiver’s arm under their own. One is hunched forward in a rigid, deliberate shuffle; another pauses silently by the stairs, his face slack, not absent — just suspended, as if every gesture had become too costly. On its busiest days, the clinic sees over 60 patients. “And more are coming,” Bloem says. Bloem’s presence is both charismatic and kinetic: tall — just over 2 meters, he says with a grin — with a habit of walking while talking, and a white coat lined with color-coded pens. His long, silver-gray hair is swept back, a few strands escaping as he paces the room. Patients paint portraits of him, write poems about him. His team calls him “the physician who never stops moving.” Unlike many researchers of his stature, Bloem doesn’t stay behind the scenes. He speaks at international conferences, consults with policymakers, and states his case to the public as well as to the scientific world. His work spans both care and cause — from promoting movement and personalized treatment to sounding the alarm about what might be triggering the disease in the first place. Alongside his focus on exercise and prevention, he’s become one of the most outspoken voices on the environmental drivers of Parkinson’s — and what he sees as a growing failure to confront their long-term impact on the human brain. Advertisement “Parkinson’s is a man-made disease,” he says. “And the tragedy is that we’re not even trying to prevent it.” When the English surgeon James Parkinson first described the “shaking palsy” in 1817, it was considered a medical curiosity — a rare affliction of aging men. Two centuries later, Parkinson’s disease has more than doubled globally over the past 20 years, and is expected to double again in the next 20. It is now one of the fastest-growing neurological disorders in the world, outpacing stroke and multiple sclerosis. The disease causes the progressive death of dopamine-producing neurons and gradually robs people of movement, speech and, eventually, cognition. There is no cure. Age and genetic predisposition play a role. But Bloem and the wider neurological community contend that those two factors alone cannot explain the steep rise in cases. In a 2024 paper co-authored with U.S. neurologist Ray Dorsey, Bloem wrote that Parkinson’s is “predominantly an environmental disease” — a condition shaped less by genetics and more by prolonged exposure to toxicants like air pollution, industrial solvents and, above all, pesticides. Most of the patients who pass through Bloem’s clinic aren’t farmers themselves, but many live in rural areas where pesticide use is widespread. Over time, he began to notice a pattern: Parkinson’s seemed to crop up more often in regions dominated by intensive agriculture. “Parkinson’s was a very rare disease until the early 20th century,” Bloem says. “Then with the agricultural revolution, chemical revolution, and the explosion of pesticide use, rates started to climb.” Europe, to its credit, has acted on some of the science. Paraquat — the herbicide chemically similar to MPTP — was finally banned in 2007, although only after Sweden took the European Commission to court for ignoring the evidence of its neurotoxicity. Other pesticides with known links to Parkinson’s, such as rotenone and maneb, are no longer approved. Advertisement But that’s not the case elsewhere. Paraquat is still manufactured in the United Kingdom and China, sprayed across farms in the United States, New Zealand and Australia, and exported to parts of Africa and Latin America — regions where Parkinson’s rates are now rising sharply. Once the second-most widely sold herbicide in the world — after glyphosate — paraquat helped drive major profits for its maker, Swiss-based and Chinese-owned company Syngenta. But its commercial peak has long passed, and the chemical now accounts for only a small fraction of the company’s overall business. In the U.S., Syngenta faces thousands of lawsuits from people who say the chemical gave them Parkinson’s. Similar cases are moving ahead in Canada. Syngenta has consistently denied any link between paraquat and Parkinson’s, pointing to regulatory reviews in the U.S., Australia and Japan that found no evidence of causality.  The company told POLITICO that comparisons to MPTP have been repeatedly challenged, citing a 2024 Australian review which concluded that paraquat does not act through the same neurotoxic mechanism. There is strong evidence, the company said in a written response running to more than three pages, that paraquat does not cause neurotoxic effects via the routes most relevant to human exposure — ingestion, skin contact or inhalation. “Paraquat is safe when used as directed,” Syngenta said. Still, for Bloem, even Europe’s bans are no cause for comfort. “The chemicals we banned? Those were the obvious ones,” Bloem says. “What we’re using now might be just as dangerous. We simply haven’t been asking the right questions.” A CHEMICAL EUROPE CAN’T QUIT Among the chemicals still in use, none has drawn more scrutiny — or survived more court battles — than glyphosate. It’s the most widely used herbicide on the planet. You can find traces of it in farmland, forests, rivers, raindrops and even in tree canopies deep inside Europe’s nature reserves. It’s in household dust, animal feed, supermarket produce. In one U.S. study, it showed up in 80 percent of urine samples taken from the general public. For years, glyphosate, sold under the Roundup brand, has been at the center of an international legal and regulatory storm. In the United States, Bayer — which acquired Monsanto, Roundup’s original maker — has paid out more than $10 billion to settle lawsuits linking glyphosate to non-Hodgkin’s lymphoma.  Advertisement Glyphosate is now off-patent and manufactured by numerous companies worldwide. But Bayer remains its top seller — achieving an estimated €2.6 billion in glyphosate-related sales in 2024, even as market competition and legal pressures cut into profits. In Europe, lobbyists for the agricultural and chemical sectors have fought hard to preserve its use, warning that banning glyphosate would devastate farming productivity. National authorities remain split. France has tried to phase it out. Germany has promised a full ban — but never delivered. In 2023 — despite mounting concerns, gaps in safety data and political pressure — the European Union reauthorized it for another 10 years. While most of the debate around glyphosate has centered on cancer, some studies have found possible links to reproductive harm, developmental disorders, endocrine disruption and even childhood cancers. Glyphosate has never been definitively linked to Parkinson’s. Bayer told POLITICO in a written response that no regulatory review has ever concluded any of its products are associated with the disease, and pointed to the U.S.-based Agricultural Health Study, which followed nearly 40,000 pesticide applicators and found no statistically significant association between glyphosate and the disease. Bayer said glyphosate is one of the most extensively studied herbicides in the world, with no regulator identifying it as neurotoxic or carcinogenic. But Bloem argues that the absence of a proven link says more about how we regulate risk than how safe the chemical actually is. Unlike paraquat, which causes immediate oxidative stress and has been associated with Parkinson’s in both lab and epidemiological studies, glyphosate’s potential harms are more indirect — operating through inflammation, microbiome disruption or mitochondrial dysfunction, all mechanisms known to contribute to the death of dopamine-producing neurons. But this makes them harder to detect in traditional toxicology tests, and easier to dismiss. “The problem isn’t that we know nothing,” Bloem says. “It’s that we’re not measuring the kind of damage Parkinson’s causes.” Responding, Bayer pointed to paraquat as one of only two agricultural chemicals that studies have linked directly to the development of Parkinson’s disease — even as Syngenta, its manufacturer, maintains there is no proven connection. Advertisement The EU’s current pesticide evaluation framework, like that of many other regulatory systems, focuses primarily on acute toxicity — short-term signs of poisoning like seizures, sudden organ damage or death. Manufacturers submit safety data, much of it based on animal studies looking for visible behavioral changes. But unlike for the heroin users in California, who were exposed to an unusually potent toxin, Parkinson’s doesn’t announce itself with dramatic symptoms in the short term. It creeps in as neurons die off, often over decades. “We wait for a mouse to walk funny,” Bloem says. “But in Parkinson’s, the damage is already done by the time symptoms appear.” The regulatory tests also isolate individual chemicals, rarely examining how they interact in the real world. But a 2020 study in Japan showed how dangerous that assumption may be. When rodents were exposed to glyphosate and MPTP — the very compound that mimicked Parkinson’s in the California heroin cases — the combination caused dramatically more brain cell loss than either substance alone. “That’s the nightmare scenario,” Bloem says. “And we’re not testing for it.” Even when data does exist, it doesn’t always reach regulators. Internal company documents released in court suggest Syngenta knew for decades that paraquat could harm the brain — a charge the company denies, insisting there is no proven link. More recently, Bayer and Syngenta have faced criticism for failing to share brain toxicity studies with EU authorities in the past — data they had disclosed to U.S. regulators. In one case, Syngenta failed to disclose studies on the pesticide abamectin. The Commission and the EU’s food and chemical agencies have called this a clear breach. Bloem sees a deeper issue. “Why should we assume these companies are the best stewards of public health?” he asked. “They’re making billions off these chemicals.”  Syngenta said that none of the withheld studies related to Parkinson’s disease and that it has since submitted all required studies under EU transparency rules. The company added that it is “fully aligned with the new requirements for disclosure of safety data.” Some governments are already responding to the links between Parkinson’s and farming. France, Italy and Germany now officially recognize Parkinson’s as a possible occupational disease linked to pesticide exposure — a step that entitles some affected farmworkers to compensation. But even that recognition, Bloem argues, hasn’t forced the broader system to catch up. WHERE SCIENCE STOPS, POLITICS BEGINS Bloem’s mistrust leads straight to the institutions meant to protect public health — and to people like Bernhard Url, the man who has spent the past decade running one of the most important among them.  Url is the outgoing executive director of the European Food Safety Authority, or EFSA — the EU’s scientific watchdog on food and chemical risks, based in Parma, Italy. The agency has come under scrutiny in the past over its reliance on company-submitted studies. Url doesn’t deny that structure, but says the process is now more transparent and scientifically rigorous. I met Url while he was on a visit to Brussels, during his final months as EFSA’s executive director. Austrian by nationality and a veterinarian by training, he speaks precisely, choosing his words with care. If Bloem is kinetic and outwardly urgent, Url is more reserved — a scientist still operating within the machinery Bloem wants to reform. Advertisement Still, Url didn’t dispute the core of the critique. “There are areas we don’t yet take into consideration,” he told me, pointing to emerging science around microbiome disruption, chemical synergy and chronic low-dose exposure. He didn’t name Parkinson’s, but the implications were clear. “We’re playing catch-up,” he admitted. Part of the problem, he suggested, is structural. The agency relies on a system built around predefined methods and industry-supplied data. “We assess risk based on what we’re given, and what the framework allows us to assess,” Url said. “But science evolves faster than legislation. That’s always the tension.” EFSA also works under constraints that its pharmaceutical counterpart, the European Medicines Agency, does not. “EMA distributes money to national agencies,” Url said. “We don’t. There’s less integration, less shared work. We rely on member states volunteering experts. We’re not in the same league.” A pesticide-free farm in in Gavorrano, Italy. | Alberto Pizzoli/AFP via Getty Images Url didn’t sound defensive. If anything, he sounded like someone who’s been pushing against institutional gravity for a long time. He described EFSA as an agency charged with assessing a food system worth trillions — but working with limited scientific resources, and within a regulatory model that was never designed to capture the risks of chronic diseases like Parkinson’s. “We don’t get the support we need to coordinate across Europe,” he said. “Compared to the economic importance of the whole agri-food industry … it’s breadcrumbs.” But he drew a sharp line when it came to responsibility. “The question of what’s safe enough — that’s not ours to answer,” he said. “That’s a political decision.” EFSA can flag a risk. It’s up to governments to decide whether that risk is acceptable. Advertisement It was a careful way of saying what Bloem had said more bluntly: Science may illuminate the path, but policy chooses where — and whether — to walk it. And in a food system shaped by powerful interests, that choice is rarely made in a vacuum. “There are gaps,” Url said, “and we’ve said that.” But gaps in science don’t always lead to action. Especially when the cost of precaution is seen as an economic threat. THE DOCTOR WHO WON’T SLOW DOWN Evidence from the field is becoming harder to ignore. In France, a nationwide study found that Parkinson’s rates were significantly higher in vineyard regions that rely heavily on fungicides. Another study found that areas with higher agricultural pesticide use — often measured by regional spending — tend to have higher rates of Parkinson’s, suggesting a dose-response relationship. In Canada and the U.S., maps of Parkinson’s clusters track closely with areas of intensive agriculture. The Netherlands has yet to produce comparable data. But Bloem believes it’s only a matter of time. “If we mapped Parkinson’s here, we’d find the same patterns,” he says. “We just haven’t looked yet.” In fact, early signs are already emerging. The Netherlands, known for having one of the highest pesticide use rates in Europe, has seen a 30 percent rise in Parkinson’s cases over the past decade — a slower increase than in some other regions of the world, but still notable, Bloem says. In farming regions like the Betuwe, on the lower reaches of the Rhine River, physiotherapists have reported striking local clusters. One village near Arnhem counted over a dozen cases. “I don’t know of a single farmer who’s doing things purposely wrong,” Bloem says. “They’re just following the rules. The problem is, the rules are wrong.” To Bloem, reversing the epidemic means shifting the regulatory mindset from reaction to prevention. That means requiring long-term neurotoxicity studies, testing chemical combinations, accounting for real-world exposure, genetic predisposition and the kind of brain damage Parkinson’s causes — and critically, making manufacturers prove safety, rather than scientists having to prove harm. “We don’t ban parachutes after they fail,” Bloem says. “But that’s what we do with chemicals. We wait until people are sick.” Advertisement His team is also studying prevention-focused interventions — including exercise, diet and stress reduction — in people already diagnosed with Parkinson’s, in one of the most comprehensive trials of its kind. Still, Bloem is realistic about the limits of individual action. “You can’t exercise your way out of pesticide exposure,” he says. “We need upstream change.” Bloem has seen it before — the same pattern playing out in slow motion. “Asbestos,” he says “Lead in gasoline. Tobacco. Every time, we acted decades after the damage was done.” The science existed. The evidence had accumulated. But the decision to intervene always lagged. “It’s not that we don’t know enough,” he adds. “It’s that the system is not built to listen when the answers are inconvenient.” The clinic has grown quiet. Most of the staff have left for the day, the corridors are still. Bloem gathers his things, but he’s not finished yet. One more phone call to make — something he’ll take, as always, while walking. As we stand up to go into the hallway, he pauses. “If we don’t fix this now,” he says, “we’re going to look back in 50 years and ask: ‘What the hell were we thinking?’” He slips on a pair of black headphones, nods goodbye and turns toward the exit. Outside, he’s already striding across the Radboud campus, talking into the cold evening air — still moving, still making calls, still trying to bend a stubborn system toward change. Graphics by Lucia Mackenzie.

The newly created [aclp.eu] Agricultural Crop Licensing Platform (ACLP) simplifies access to patented traits for European plant breeders, enabling them to leverage the latest technologies and help farmers to meet the challenges of sustainable food production. Europeans rightly expect safe food at affordable prices. But this is getting harder and harder for European farmers to do. Consumer expectations regarding quality and price keep rising, while farmers face increasing pressure to adopt sustainable practices, for example, by reducing their carbon emissions and the impact agriculture has on soil and water. Across the EU, arable farmers are increasingly confronted with drought conditions while the amount of cultivatable land is shrinking. At the same time, the EU is making trade agreements with exporters of agricultural produce that are exposing European farming to ever greater competition. European agriculture cannot afford to be left behind as producers in other parts of the world have access to the latest agricultural technologies. If farmers have access to the best available seed varieties, as well as other innovations, they can tackle these competing challenges. EU policymakers are currently negotiating new rules for developing innovative plant varieties through new genomic techniques (NGTs). These techniques allow plant breeders to introduce highly desirable characteristics such as improved drought tolerance or pest resistance, helping plants cope with challenges like water shortages or maintaining yields, without increasing the use of crop protection products or fertilisers. These sought-after traits can be enhanced by speeding up traditional plant breeding techniques, which, until now, have required long-term work crossing varieties to develop desired traits. Plant breeding can focus, for example, on developing varieties with shorter stems, that are more resistant to heavy rain. It can also improve plants’ resistance to common diseases, such as rhizomania, a common disease affecting sugar beet crops. NGTs use very precise genome-editing tools to target the traits breeders want to enhance in a plant’s own DNA. The precise targeting means that the desired characteristics can be boosted in a single generation rather than the dozens or hundreds that traditional plant breeding requires. Unlike genetic modification, NGTs do not introduce genetic material from other organisms. They work with the material that is already a natural part of the plant’s DNA. If we want European farmers to continue to produce safe, affordable food and farm in an environmentally sustainable way, we need to ensure that plant breeders have access to the latest plant technologies in their already shrinking toolbox. > If we want European farmers to continue to produce safe, affordable food and > farm in an environmentally sustainable way, we need to ensure that plant > breeders have access to the latest plant technologies(…) Currently, for many breeders across the EU, making the most of the latest varieties can involve navigating the complex world of patents. Intellectual property (IP) protection, which includes patents, is often portrayed as blocking access to an innovative technology. In actual fact, it’s not. IP protection plays a crucial role in ensuring access to and safeguarding scientific progress by securing a fair return on investment for researchers. In Europe, plant varieties can be protected under the Plant Breeders’ Rights system, which grants breeders the ability to market their innovations while allowing others to use them for further breeding. However, technological inventions, such as new traits or breeding techniques, may be protected by patents, provided they meet certain legal requirements, which include being genuinely inventive and having an industrial application. In this case, users have access to the patented technology through different mechanisms such as licensing. Effective IP protection ensures that innovators benefit from their inventions. This encourages healthy competition, which leads, in turn, to more innovation. > Effective IP protection ensures that innovators benefit from their inventions. > This encourages healthy competition, which leads, in turn, to more innovation. This can be a complex environment to navigate, especially for breeders who are not trained as IP specialists. Small businesses that want to use patented innovations can face obstacles such as lack of transparency regarding the existence of a patented trait, complexity in negotiating with a patent holder, and insecurity about fair terms and conditions. These time-consuming and expensive processes can lead some companies to refrain from breeding new varieties with the latest innovations or to fear they might be infringing patents when using a new variety released on the market. In order to reduce this complexity, plant breeders have launched several initiatives such as platforms to improve transparency around patented traits and to facilitate access to patents. These platforms strike a balance between rewarding innovation and ensuring fair availability so no single organization can monopolize critical patented inventions. For over a decade, the International Licensing Platform (ILP), has been providing access to patented traits in vegetable crops. Recognising the need for a similar system in other crops, European plant breeding companies sought to expand this model to a wider range of crops, including corn, sunflower, cereals, sugar beet, potatoes, fruit and flowers. In 2023, a group of European plant breeding companies came together to launch the Agricultural Crop Licensing Platform (ACLP), with the aim of facilitating fair access to patented traits and promoting innovation across multiple crop types. This new platform makes it easy for breeders to access current and future technologies. Instead of having to worry about complex patent rules, all they need to do is enter a standard licensing agreement and agree on a royalty fee with the patent holder. If they cannot reach an agreement within six months, they have the right to go to arbitration at the end of which they are guaranteed to get a license to use the patented variety. This system covers over 95% of all patented traits currently available on the market in Europe. The ACLP has been developed by plant breeders as a way to ensure that seed companies can offer their customers the best available varieties to deal with the competing challenges faced by European agriculture. > The ACLP has been developed by plant breeders as a way to ensure that seed > companies can offer their customers the best available varieties to deal with > the competing challenges faced by European agriculture.   If we want European farmers and Europe’s agriculture to remain competitive and produce food in a sustainable way, we must continue to enable access to the best plant varieties that the latest technologies can provide. #EnablingInnovation | www.aclp.eu | LinkedIn: ACLP – The Agricultural Crop Licensing Platform

Bird flu poses an increasing pandemic threat as it becomes more adaptive, jumping to humans, pets and zoo animals, Europe’s disease and food agencies warned on Wednesday. They are urging countries to step up their surveillance and containment measures to prevent the virus from continuing to evolve and become more dangerous to people. “In 2024, avian influenza viruses expanded their reach, infecting previously unaffected species. Our work identifies key mutations linked to a potential spread to humans, requiring rapid detection and response,” Bernhard Url, acting executive director at the European Food Safety Authority (EFSA), said in a press release. Avian flu has been recorded at high levels among wild birds and farmed species such as chickens in recent years. The virus has also jumped to other species during this time including seals, and — notably in the United States — dairy cattle.  But to date, cases among humans have been low. The U.K. reported its first case of this winter on Monday, while there have been 67 cases in the United States and one death. The risk of infection for the general European population remains low, and low-to-moderate for people routinely exposed to potentially infected animals. But the situation would change if there was any “confirmed human-to-human transmission,” said Edoardo Colzani, head of respiratory viruses at the European Centre for Disease Prevention and Control (ECDC). And this risk is increasing. The ECDC and EFSA have identified 34 key genetic mutations that make the virus more likely to jump from animals to humans but also to replicate to allow human-to-human transmission. The fact that the virus now contains all these characteristics is a “sporadic event,” Alessandro Broglia, senior scientific officer at EFSA, told POLITICO. Out of 27,000 virus sequences assessed, 144 contained the characteristics needed to jump and spread among people. “Those were mainly isolated in Asia and Africa and never in Europe,” Broglia added.  However, viruses that had acquired characteristics for spillover to humans were not only the highly pathogenic viruses, but also low pathogenic viruses, “that do not cause very serious disease, but can circulate in the population and slowly can acquire these mutations,” Broglia explained.  This makes surveillance on low pathogenic viruses  “a cornerstone” to spot these mutations and characteristics that can lead to human adaptation, he said. TEST, TEST, TEST Adaptation of avian influenza viruses to mammals can happen through genetic mutations and also through the mixing of genetic material between viruses. The interaction between wildlife, poultry, livestock and people is a driver for spillover.  “Are we creating the condition for this happening? What kind of poultry breeding system are we implementing? Why so many outbreaks in poultry farms in certain areas? And why so many jumps in mammal species?” Broglia asked, urging countries to think about how human activities facilitate the spread of such viruses. The interaction between wildlife, poultry, livestock and people is a driver for spillover. | Michael M. Santiago/Getty Images There were close to 100 human infections last year, said Colzani at the ECDC. Those often happen in occupational settings, where humans are exposed to sick animals. Colzani told POLITICO it would be “good practice” to test people when animal outbreaks occur — even if a person exposed to sick animals doesn’t show any symptoms “to detect if there is any silent transmission.” To avoid “an extremely rare” case of human influenza mixing with avian influenza, Colzani recommends vaccinating occupational animal workers against human seasonal flu to help reduce this risk. Avian influenza is circulating globally and, while there is data from North America, Japan or South Korea, it’s missing in vast swathes of the world due to limited laboratory capability. “In the rest of Asia or the full African continent we know little if anything, and this is the problem,” Broglia said, “we have no clue what is happening there.” He stressed the need for capacity building in these areas outside of the EU. Additionally, he called for harmonizing genetic information and associated metadata, which is “crucial for prevention and preparedness,” Broglia said. 

This is an exciting time in health innovation. Yes, we face real challenges in meeting demand for care, due to factors such as an aging population, shortages of healthcare professionals and the rise of non-communicable diseases. But we also see potential for several fields of technology to combine in ways that benefit patients. Healthcare is changing and Europe can be at the heart of this transformation. One patent every 30 minutes. This is how fast the medical technology sector advances. Devices, diagnostics, data and digital health: the power of medical technology has the potential to redefine how healthcare is delivered. Existing solutions – not all yet available in Europe – and the upcoming medical innovations can empower Europe to improve and save lives. They can also put health systems on a more sustainable path forward. > One patient every 30 minutes. This is how fast the medical technology sector > advances. That’s the power of medical technologies. For patients, this translates into better outcomes. Consider how remote monitoring keeps people feeling safe even a hospital distance; how advances in surgery accelerate recovery; how timely diagnosis facilitates prompt treatment that increases not only survival rates, but also quality of life.   With the benefit of long-established medical solutions and exciting innovations on the horizon, medical technologies can offer solutions for patients, healthcare professionals and healthcare systems. By supporting the development and launch of more medical technology here in Europe, people can look forward to swift and more equitable access to cutting-edge health technologies. via MedTech Europe The medical technology industry is one of Europe’s most innovative sectors, adding value to people’s lives and health systems, while creating jobs and driving exports. Europe’s 37,000 medical technology companies – 90% of which are small and medium-sized enterprises – invest heavily in innovation and employ more than 880,000 people. For context, that’s on par with the population of Zagreb. These companies deliver a range of everyday solutions such as sticking plasters, syringes and surgical masks, as well as advanced technologies that include genetic tests, implantable heart valves and pacemakers, as well as a wide array of digital health solutions. Many patients receiving healthcare, whether at home, in the community or in a hospital, are likely to encounter several medical technologies on their journey.  In fact, the chances are that you and your family have benefited from some of these products. Sometimes, we use these tools without giving a second thought to how they were developed. Or our doctors, nurses and pharmacists harness their power to improve our care in ways we do not see – in the lab, for example, or in the operating room. > The medical technology industry is one of Europe’s most innovative sectors, > adding value to people’s lives and health systems, while creating jobs and > driving exports. The power of medical technology stems from the millions of ways, big and small, that people across Europe encounter medical technologies. It is about the power of movement, the power of data, the power of protection, the power of independence and the ways this power brings efficiency to our valued health systems. via MedTech Europe Health is also the answer to boosting Europe’s competitiveness Boosting Europe’s competitiveness is on everyone’s lips. Let’s remember that, beyond delivering immense social benefits, better health promotes economic growth by boosting productivity. Health as an investment in economic growth should also be part of the current political discussion as a way forward. > Let’s remember that, beyond delivering immense social benefits, better health > promotes economic growth by boosting productivity.  Innovation continues to be critical to tackling diseases without a known cure, as well as to help us increase uptake and adherence to interventions that deliver positive patient outcomes. Health is part of the answer to boost Europe’s competitiveness. Europe now has five years to put patients at the heart of the conversation and harness new waves of technology to deliver a bright and healthier future – a future where our health systems can meet the immediate and long-term needs of the population in a way that is resilient to future shocks over the long term.  We have an unprecedented opportunity to build better, safer, more sustainable health services. Let’s take it together.  -------------------------------------------------------------------------------- Looking for more inspiration? Check out the #PowerOfMedtech Discover MedTech Europe’s manifesto Empowering Patients, Inspiring Innovation --------------------------------------------------------------------------------

The world stands at a critical juncture in the fight against Alzheimer’s disease and dementia. With life expectancy rising globally and more people living longer, the number of individuals affected by dementia is expected to increase in the coming years – and by 2050 will affect as many as 139 million adults globally.[i]This looming crisis demands immediate, coordinated action from governments, healthcare systems and society at large. The 2023 G7 Nagasaki health ministers’ meeting reaffirmed the G7’s promise to promote research and development to improve health outcomes through the prevention, risk reduction, early detection, diagnosis and treatment of dementia including potential disease-modifying therapies.[ii] As the G7 health ministers convened in Italy, passing the torch to Canada for 2025, we call for renewed efforts to prioritize Alzheimer’s disease, the leading cause of dementia, as a public health priority. Despite this commitment, health systems across the world remain woefully unprepared to embrace new innovations in diagnosis and treatment, risking that European patients may be left behind the rest of the world in access to new tools and discouraging research that could lead to medical innovation where therapeutic options today are scarce.  The urgency for ensuring access to treatments and diagnosis Alzheimer’s disease is a devastating and fatal condition that robs individuals of their memories, independence and, ultimately, their futures. [iii] It is estimated that Alzheimer’s disease specifically impacts 416 million people worldwide, or more than one in five people aged 50 and above.[iv] In Europe alone, 7 million people are currently living with the disease, a number that could double by 2030.³ The wider impacts on health systems and economies are also profound – an estimated $2.8 trillion per year, a sum which is predicted to rise to $4.7 trillion by 2030.[v] > Alzheimer’s disease is a devastating and fatal condition that robs individuals > of their memories, independence and, ultimately, their futures. For far too long, a lack of new breakthroughs and a string of clinical trial failures has created helplessness and apathy to the treatment of Alzheimer’s disease, leading to many – including healthcare professionals – thinking it is part of aging and there is nothing we can do. Still today, most cases of Alzheimer’s disease are misdiagnosed, diagnosed too late for treatment to be considered or never diagnosed at all.[iv] With newly investigated treatments that target the underlying pathology of the disease, we are potentially altering and slowing the course of disease progression and delaying the need for care services. Furthermore, advanced testing methods, such as blood-based biomarker tests, are potential game-changers in rapid and accurate diagnosis. > With newly investigated treatments that target the underlying pathology of the > disease, we are potentially altering and slowing the course of disease > progression A decade of remarkable progress The 2013 G8 Dementia Summit in London challenged the Alzheimer’s disease research community to develop a disease-modifying therapy by 2025.[vi] Today, there is not just one, but multiple therapies in the field that have been demonstrated to deliver meaningful benefits. We know that the hallmarks of the disease can appear two decades before symptoms manifest.[vii] We now possess the tools to respond to Alzheimer’s disease informed by patients’ genetic profiles. But only if the disease is detected early enough. Just as detecting cancer cells early and personalized medicine is a winning strategy, we are entering a new stage for Alzheimer’s disease response and management. > We now possess the tools to respond to Alzheimer’s disease informed by > patients’ genetic profiles. But only if the disease is detected early enough People around the world want and deserve access[viii] to diagnosis and treatment options available now, and we must ensure European patients are not left behind. Committing to a future where memories endure We have a historic opportunity to elevate the G7 target for a new era in the fight against dementia and Alzheimer’s disease, drawing on the latest scientific understanding, advanced detection and treatment tools for a potentially far stronger response. Lilly has driven scientific progress for over 35 years, and we have no plans to slow our efforts now. We envision a future where timely detection, accurate diagnosis, appropriate treatment and prevention become reality. We are committed to collaborating with healthcare ecosystems to build the infrastructure needed to scale and adopt scientific advances. Together, we can change the discourse around Alzheimer’s disease and usher in a new era – one of support, understanding and hope.   -------------------------------------------------------------------------------- [i] Alzheimer’s Disease International. Dementia Statistics. Available at: https://www.alzint.org/about/dementia-facts-figures/dementia-statistics/ [ii] G7 Nagasaki Health Ministers’ Communiqué https://www.mhlw.go.jp/content/10500000/001096403.pdf [iii] EBC and EFPIA. (2023). RETHINKING Alzheimer’s disease: Detection and diagnosis. Available at: https://www.braincouncil.eu/wp-content/uploads/2023/04/RETHINK-AlzheimerDisease-Report_DEF3_HD_rvb_03042023.pdf [iv] Alzheimer’s Association (2022) Global estimates on the number of persons across the Alzheimer’s disease continuum. Available at: https://alz-journals.onlinelibrary.wiley.com/doi/full/10.1002/alz.12694 [v] Nandi A, Counts N, Chen S, et al. Global and regional projections of the economic burden of Alzheimer’s disease and related dementias from 2019 to 2050: A value of statistical life approach. EClinicalMedicine. 2022;51:101580. Published 2022 Jul 22. doi:10.1016/j.eclinm.2022.101580. [vi] GOV.UK. (n.d.). G8 dementia summit communique. [online] Available at: https://www.gov.uk/government/publications/g8-dementia-summit-agreements/g8-dementia-summit-communique. [vii] Aisen PS, Cummings J, Clifford RJ, On the path to 2025: understanding the Alzheimer’s disease continuum. Alzs Res Therapy. 2017 9: 60. [viii] World Alzheimer Report 2024 | Alzheimer’s Disease International (ADI) (alzint.org)