Developed and funded by AbbVie in collaboration with the World Ovarian Cancer Coalition (the Coalition) and based on an interview with Christel Paganoni-Bruijns, chief executive officer of the Coalition, and Frances Reid, programme director of the Coalition -------------------------------------------------------------------------------- Late diagnoses, burdensome treatments and disease recurrence are realities for many women with ovarian cancer.1,2,3,4,5 Their stories are evidence of systemic challenges impacting care that policymakers have the power to combat. The World Ovarian Cancer Coalition (the Coalition), the only global ovarian cancer patient advocacy organization, is driving evidence generation to inform tangible policy reforms that could reduce the socioeconomic burden of this disease on individuals and wider societies.6 Ovarian cancer is one of the deadliest cancers affecting women in Europe, yet it remains overlooked.7,8 While other areas of women’s health benefit from policy frameworks and public awareness, ovarian cancer continues to sit in the margins, creating real human consequences. In 2022, Europe recorded the highest rates of ovarian cancer incidence and mortality worldwide.8 Only 40 percent of women in Europe remain alive five years after being diagnosed with ovarian cancer, with advanced-stage diagnoses often having poorer outcomes.8 Despite this, ovarian cancer remains absent from many national cancer plans and there is still no unified European policy framework to address it.  In partnership with European patient groups, the Coalition is convening a series of workshops for ovarian cancer survivors to share their experiences. Alongside leading clinicians and advocates, the Coalition is leveraging these testimonies to develop policy recommendations to inform national and European cancer strategies. Christel Paganoni-Bruijns, the Coalition’s chief executive officer, and Frances Reid, programme director and Every Woman Study lead, share their insights into the challenges women with ovarian cancer face and how policy changes can offer improved support. The hidden emotional and physical cost  There are education and awareness gaps that can impede diagnosis and prioritization. Many women believe that cervical cancer screening (otherwise known as the Pap smear) can detect ovarian cancer.9 Another widespread misconception is that ovarian cancer has no symptoms until very advanced stages.10 However, the Coalition’s Every Woman Study (2021) found that nine in 10 women do experience symptoms, even during the early stages.11  “These misconceptions cause real harm. They delay diagnosis, they delay action and they stop women from being heard,” Reid comments.  The ovarian cancer journey can be distressingly complex. Women frequently undergo major surgery, multiple rounds of treatment and long recovery periods.4,12,13 Even after treatment ends, the fear of recurrence can cast a shadow over daily life.  Ovarian cancer often strikes when many women are still working, caring for children, supporting aging parents and contributing to their communities in a variety of ways. 14,15 When they fall ill, the consequences ripple outwards. Some partners have to reduce their working hours or leave employment entirely to care for their loved ones.16 Families may take on emotional strain and financial pressure that can carry lasting impacts.17,18  Reid says: “These women are mothers, daughters, employees, carers, community anchors. When they are affected, the impact is not only personal — it is economic, social and predictable.” The Coalition’s socioeconomic burden study explored the cost to health services, the impact of informal caregiving, productive time lost by patients traveling to and receiving care, and longer-term productivity impacts.17 It found that the majority of the socioeconomic impact of ovarian cancer does not come from health service costs, but from the value of lives lost.17 Across the 11 countries examined, ill-health from ovarian cancer led to lost labor productivity equivalent to 2.5 million days of work.17 In the U.K. alone, productivity losses amounted to over US$52 million per year.17 In 2026, the Coalition will look further into the socioeconomic impact across high-income countries across Europe. Despite this measurable burden, ovarian cancer remains under-prioritized in health planning and funding decisions. Why women still struggle to get the care they need  Across Europe, many women face delays at various stages along their journey, some due to policy and system design choices. For example, without screening methods for early detection, diagnosis relies heavily on recognizing symptoms and receiving timely referrals.1,19,20 Yet many women often struggle to access specialists or face long waits for investigations.2,11,21   While Europe benefits from world-class innovation in ovarian cancer research, access to that innovation can be inconsistent. Recently published data from the European Federation of Pharmaceutical Industries and Associations (EFPIA) found that average time to availability for oncology products in Europe continues to increase, with 2024 data showing time from approval to access was 33 days slower than in 2023 and 66 days slower than in 2022.22 In 2024, it took an average of 586 days — or ~19 months — for patients to access new therapies after approval, with significant variation between countries.22 Delays in treatment impact prognosis and survival for patients with ovarian cancer.23 The challenges in care also extend to psychological and emotional support. The Every Woman Study found that only 28 percent of women were offered mental health support, despite the known vulnerabilities throughout treatment, recovery and recurrence.12   Paganoni-Bruijns and Reid reinforce that through the Coalition’s work, they have often found that “women feel unseen and unheard. They see progress in other cancers and ask: why not us?” What a better future looks like A better future starts with addressing ovarian cancer as part of a holistic vision and plan for women’s health. Europe has the foundational frameworks, infrastructure and clinical expertise to lead the way. What is needed now is political attention and policy alignment that includes ovarian cancer as part of these broader programs.  Paganoni-Bruijns comments: “We cannot keep treating gynecological cancers as if they exist in separate boxes. Women experience their health as one reality, so policies must reflect that.”  Existing structures in breast and cervical cancer offer valuable lessons. Across Europe, millions of women already move through screening programs, health promotion initiatives and established diagnostic pathways.24 These systems could be used to increase awareness of ovarian cancer symptoms, improve referral routes and access to specialist care, and support earlier detection. Increased investment in genetic and biomarker testing, as well as emerging early detection research, can be accelerated by aligning with these established programs. The Coalition is partnering with global experts to translate these lessons into the first-ever evidence-based framework for ovarian cancer mortality rate reduction, however, policy action at the regional and national level must keep pace.  The EU-funded DISARM project is a promising example of the progress underway to help Europe ‘disarm’ the threat of ovarian cancer. DISARM is a coordinated, multi-country effort to strengthen ovarian cancer risk assessment, validate affordable early-detection tools and understand how these innovations can be implemented within real-world health systems. Crucially, it is designed both to generate evidence and to address feasibility, uptake and system readiness, the factors that, together, determine whether innovation actually reaches patients.   As Paganoni-Bruijns explains, “DISARM shows what progress looks like when science, policy and patient experience are designed to work together. It is not about a single breakthrough or ‘quick fix’, but about building the conditions for earlier detection — through better risk assessment, validated tools and systems that are ready to use them.”  Yet projects like DISARM, while essential, cannot carry the burden alone. Without a cohesive European or global World Health Organization framework for ovarian cancer, progress remains fragmented, uneven and vulnerable to delay. Europe has often set the pace for global cancer policy and ovarian cancer should be no exception. By recognizing ovarian cancer as a priority within European women’s health, policymakers can be part of setting the global standard for a new era of coordinated and patient-centered care. Paganoni-Bruijns shares the Coalition’s call-to-action: “The systems exist. The evidence exists. We know that we need to include ovarian cancer in national cancer plans, improve diagnostic pathways, strengthen genetic testing and commit to EU-level monitoring. What is missing is prioritization. With leadership and accountability, ovarian cancer does not have to remain one of Europe’s deadliest cancers.” The stakes are rising and the window for meaningful action is narrowing. But with focused leadership, Europe can change the trajectory of ovarian cancer. Women across the continent deserve earlier diagnoses, access to innovation and the chance to live not just longer, but better. To understand why action on ovarian cancer cannot wait, listen to the Coalition’s Changing the Ovarian Cancer Story podcast series, or visit the Coalition’s website. -------------------------------------------------------------------------------- References 1 Rampes S, et al. Early diagnosis of symptomatic ovarian cancer in primary care in the UK: opportunities and challenges. Prim Health Care Res Dev. 2022;23:e52. 2 Funston G, et al. Detecting ovarian cancer in primary care: can we do better? Br J Gen Pract. 2022;72:312-313.  3 Tookman L, et al. Diagnosis, treatment and burden in advanced ovarian cancer: a UK real-world survey of healthcare professionals and patients. Future Oncol. 2024;20:1657-1673.  4 National Cancer Institute. Ovarian Epithelial, Fallopian Tube, and Primary Peritoneal Cancer Treatment (PDQ) – Health Professional Version. Available at: https://www.cancer.gov/types/ovarian/hp/ovarian-epithelial-treatment-pdq [Last accessed: January 2026]. 5 Beesley et al. Evaluating patient-reported symptoms and late adverse effects following completion of first-line chemotherapy for ovarian cancer using the MOST (Measure of Ovarian Symptoms and Treatment concerns). Gynecologic Oncology 164 (2022):437-445.  6 World Ovarian Cancer Coalition. About the World Ovarian Cancer Coalition. Available at: https://worldovariancancercoalition.org/about-us/ [Last accessed: January 2026]. 7 Manzano A, Košir U, Hofmarcher T. Bridging the gap in women’s cancers care: a global policy report on disparities, innovations and solutions. IHE Report 2025:12. The Swedish Institute for Health Economics (IHE); 2025. 8 ENGAGe. Ovarian Cancer. Available at: https://engage.esgo.org/gynaecological-cancers/ovarian-cancer/ [Last accessed: January 2026].  9 Target Ovarian Cancer. Driving change through knowledge – updated NHS cervical screening guide. Available at: https://targetovariancancer.org.uk/news/driving-change-through-knowledge-updated-nhs-cervical-screening-guide [Last accessed: January 2026]. 10 Goff BA, et al. Frequency of Symptoms of Ovarian Cancer in Women Presenting to Primary Care Clinics. JAMA. 2004;291(22):2705–2712.  11 Reid F, et al. The World Ovarian Cancer Coalition Every Woman Study: identifying challenges and opportunities to improve survival and quality of life. Int J Gynecol Cancer. 2021;31:238-244.  12 National Health Service (NHS). Ovarian cancer. Treatment. Available at: https://www.nhs.uk/conditions/ovarian-cancer/treatment/ [Last accessed: January 2026].  13 Cancer Research UK. Recovering from ovarian cancer surgery. Available at: https://www.cancerresearchuk.org/about-cancer/ovarian-cancer/treatment/surgery/recovering-from-surgery [Last accessed: January 2026]. 14 National Health Service (NHS). Ovarian cancer. Causes. Available at: https://www.nhs.uk/conditions/ovarian-cancer/causes/ [Last accessed: January 2026].  15 American Cancer Society. Ovarian Cancer Risk Factors. Available at: https://www.cancer.org/cancer/types/ovarian-cancer/causes-risks-prevention/risk-factors.html [Last accessed: January 2026].  16 Shukla S, et al. VOCAL (Views of Ovarian Cancer Patients and Their Caregivers – How Maintenance Therapy Affects Their Lives) Study: Cancer-Related Burden and Quality of Life of Caregivers [Poster]. Presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Europe; 2022 Nov 6–9; Vienna, Austria. 17 Hutchinson B, et al. Socioeconomic Burden of Ovarian Cancer in 11 Countries. JCO Glob Oncol. 2025;11:e2400313. 18 Petricone-Westwood D, et al.An Investigation of the Effect of Attachment on Distress among Partners of Patients with Ovarian Cancer and Their Relationship with the Cancer Care Providers. Current Oncology. 2021;28(4):2950–2960.  19 World Ovarian Cancer Coalition. Ovarian Cancer Testing & Detection. Available at: http://worldovariancancercoalition.org/about-ovarian-cancer/detection-testing/ [Last accessed: January 2026]. 20 National Institute for Health and Care Excellence. Suspected cancer: recognition and referral. Available at: https://www.nice.org.uk/guidance/ng12/resources/suspected-cancer-recognition-and-referral-pdf-1837268071621 [Last accessed: January 2026]. 21 Menon U, et al. Diagnostic routes and time intervals for ovarian cancer in nine international jurisdictions; findings from the International Cancer Benchmarking Partnership (ICBP). Br J Cancer. 2022;127:844-854.  22 European Federation of Pharmaceutical Industries and Associations (EFPIA). New data shows no shift in access to medicines for millions of Europeans. Available at: https://www.efpia.eu/news-events/the-efpia-view/statements-press-releases/new-data-shows-no-shift-in-access-to-medicines-for-millions-of-europeans/ [Last accessed: January 2026].  23 Zhao J, et al. Impact of Treatment Delay on the Prognosis of Patients with Ovarian Cancer: A Population-based Study Using the Surveillance, Epidemiology, and End Results Database. J Cancer. 2024;15:473-483.  24 European Commission. Europe’s Beating Cancer Plan: Communication from the commission to the European Parliament and the Council. Available at: https://health.ec.europa.eu/system/files/2022-02/eu_cancer-plan_en_0.pdf [Last accessed: January 2026].  -------------------------------------------------------------------------------- ALL-ONCOC-250039 v1.0  February 2026 -------------------------------------------------------------------------------- Disclaimer POLITICAL ADVERTISEMENT * The sponsor is AbbVie * The ultimate controlling entity is AbbVie More information here.

Health Secretary Robert F. Kennedy Jr. came within hours of publicly promoting Denmark’s childhood vaccine schedule as an option for American parents — before legal and political concerns got in the way. A senior HHS official told POLITICO that a press conference set for Friday was canceled at the last minute after the HHS Office of the General Counsel said it would invite a lawsuit the administration could lose. A second senior official at the Department of Health and Human Services confirmed the press conference, which HHS had publicly announced, was to be about the Danish schedule. The second official said it was canceled because it was deemed politically risky. Billed as an “announcement regarding children’s health,” Kennedy was to appear alongside his top agency heads and Tracy Beth Høeg, the Food and Drug Administration’s top drug regulator. Høeg touted the Danish schedule at a vaccine advisory committee meeting earlier this month. HHS canceled the event Thursday evening, hours after announcing it. Andrew Nixon, an HHS spokesperson, called accounts of the cancellation that didn’t come directly from the department “pure speculation” in a statement. HHS officials skeptical of moving to the Danish schedule, which recommends immunization for only 10 of the 17 diseases on the U.S. list, were relieved it was never publicly recommended, the first official said. The internal confusion and disagreement follow similar management bungling within HHS’ Food and Drug Administration that has frustrated the White House. On Dec. 5, President Donald Trump signed a presidential memorandum titled “Aligning United States Core Childhood Vaccine Recommendations with Best Practices from Peer, Developed Countries.” The memorandum directed HHS and the Centers for Disease Control and Prevention, one of its subagencies that sets the vaccine schedule, to review peer-country best practices for vaccines recommended for all children and, if those practices were judged superior, to update the U.S. schedule while preserving access to vaccines already available. In the memorandum, Trump mentioned Denmark, Japan and Germany as examples of countries that recommend fewer shots than the U.S. According to the first official, Kennedy and his top aide, Stefanie Spear, helped sell the peer-country framing to West Wing officials as the clearest way to turn internal vaccine skepticism into a signed White House directive. Spear is Kennedy’s principal deputy chief of staff and senior counselor. Kennedy is a longtime vaccine skeptic who believes the U.S. schedule has grown too quickly, has not been tested in its entirety for adverse effects, and is a likely cause of rising autism rates. Numerous studies have not found a link between vaccines and the neurological disorder that now affects one in 31 U.S. children, up from one in 150 two decades ago. Experts in the condition, which affects the ability to communicate, say expanded diagnostic criteria and awareness are responsible for most of that rise. The condition’s cause is usually genetic, they believe, but researchers are studying possible environmental causes. HHS has made it a priority to learn more about what causes autism and why diagnoses are rising. The department’s research arm, the National Institutes of Health, announced an Autism Data Science Initiative on May 27 and has awarded around $50 million to fund 13 projects investigating potential causes. In April, Kennedy promised to reveal autism’s cause in September, but HHS later said it would reveal preliminary findings early next year. Autism researchers, who have studied the condition for years, have called that unrealistic. The first indication Kennedy might be considering the slimmer Danish schedule, which excludes vaccines for chickenpox, the flu, hepatitis A and B, meningitis, respiratory syncytial virus and rotavirus, came earlier this month during the CDC’s Advisory Committee on Immunization Practices meeting in Atlanta. Høeg presented a slide deck titled “U.S. vs. Danish Vaccine Schedule,” which the CDC posted among the meeting presentations. The department then circulated Høeg’s presentation to top officials at HHS, the first senior official said. In the ensuing debate, Høeg’s supporters proposed offering the Danish schedule as a government-recommended alternative to the U.S. one. The first senior official and two others inside HHS familiar with internal discussions, all of whom were granted anonymity to reveal deliberations they were not authorized to discuss publicly, said proponents of the Danish schedule felt that offering it would help restore trust in vaccines; many Americans were turned off by Covid-era vaccine mandates and claims that Covid shots would halt transmission that turned out to be incorrect, they argued. The three officials said the view of proponents inside the administration was that the Danish schedule could be pitched as a “reset” that might convince hesitant parents to vaccinate their kids. Critics inside the administration, the officials said, argued the plan to recommend the Danish schedule was not rigorous and science-based — and that promoting it publicly would invite criticism. Rather than restoring trust, they said it could undermine it by signaling doubt about the need for, and safety of, routine immunization. Going forward without laying the scientific groundwork or going through normal regulatory processes could also make the department vulnerable to lawsuits, the HHS general counsel’s office argued, according to the first senior official. Mike Stuart, who was a U.S. attorney in West Virginia in Trump’s first term, now is HHS general counsel. The American Academy of Pediatrics, which represents doctors who care for children, along with other physician and public health groups, has already sued HHS for changes it made earlier this year to Covid vaccine recommendations, saying the department violated rules governing how regulatory changes are made. That case is pending in federal district court in Boston. HHS has stopped recommending Covid boosters for previously vaccinated people under 65 who are not at high risk of the disease. Instead, the department says Americans should talk to their doctor and make a shared decision. Carmen Paun contributed to this story. Tim Röhn is senior editor of the Axel Springer Global Reporters Network.

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.