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IPM Brief – Issue 38 | Who gets to make the call?

By Denis Horgan, Secretary General of the International Alliance for Personalised Medicine

October 21, 2026
Editorial

Dear friends,

Europe’s clocks go back an hour this weekend. In China, meanwhile, selected researchers are being given something considerably rarer: up to fifteen years to pursue difficult scientific questions.

A separate study suggests that younger scientists may be more likely to challenge established thinking, while the contributions of experienced researchers can have a more enduring influence. Discovery, it seems, needs both the courage to disrupt and the patience to understand what lasts.

Politics and investment operate on rather different clocks. Europe is debating reductions in international development funding, despite warnings that it risks losing the trust and influence built through years of international cooperation. Roche is reconsidering future investment decisions in Germany. Merck KGaA is making a billion-dollar bet on gene-silencing medicine, while a Chinese-Swiss cancer-drug partnership carries a potential value exceeding $15 billion.

Money can cross borders in a day. Getting innovation to patients can take years.

And then there is the clock that patients live by.

In a rare-disease trial this week, a company reported results that went beyond a laboratory measurement: patients gained an average of 12.2 additional hours of pain-free time in daylight during the sixth month. In multiple myeloma, researchers are beginning to identify biological clues that may help predict treatment response before therapy even starts. Meanwhile, in Bangladesh, children missing from vaccination records offer a stark reminder that a healthcare system cannot reach people it does not know are there.

These are very different stories, but they point towards the same uncomfortable question. What is the value of scientific progress if the systems responsible for delivering it cannot keep pace?

That question comes to Madrid this Friday. ESMO will present another extraordinary collection of scientific advances. But at our Personalised Oncology Across Health Systems meeting, the International Alliance for Personalised Medicine will ask what happens after the discovery, after the biomarker result and after the clinical evidence is established.

Our patient, Claudia, may have a molecular diagnosis, an appropriate treatment and even eligibility for a clinical trial in another country. Yet she may still be unable to receive the care that science tells us she needs. The obstacles are familiar: fragmented pathways, uncertain reimbursement, inadequate diagnostic capacity and decisions that nobody quite seems responsible for making.

Across Europe, China, Brazil, Africa and beyond, health systems have different resources and responsibilities. But they increasingly face the same challenge: translating remarkable scientific possibilities into reliable, equitable and timely patient care.

We have become very good at announcing breakthroughs. We must become equally good at delivering them.

Science may have the luxury of fifteen years to find an answer. A patient waiting for diagnosis, treatment or access to a clinical trial often does not.

  • Women’s health gets a new desk at the White House: A new federal order promises coordination, but leaves the question of fresh funding open.
  • The chatbot submitted a police tip. The child’s case went to court: Two different AI failures demand different kinds of accountability.
  • ESMO has the data. Claudia needs the treatment: IAPM brings clinicians, patients, researchers and industry together in Madrid to turn precision oncology into a working care pathway.
  • The right to stand in daylight became a trial endpoint: A rare-disease drug produced encouraging results measured in pain-free time outdoors.
  • Breast cancer needs a route, not another ribbon: WHO turns its early-detection ambition into instructions for building care.
  • The children missing from the vaccine list: A measles investigation shows what happens when a campaign cannot see everyone it must reach.
  • Roche put the investment cheque on the table: Proposed health-insurance savings have become a confrontation over where drugmakers build.
  • The price of Silence is $1.3 billion: Merck KGaA moves to buy a gene-silencing treatment for a rare blood cancer.
  • The tumour left clues before treatment began: A new myeloma study links a cancer’s starting biology to its response to intensive therapy.

A US executive order signed on Monday directs the National Institutes of Health to establish a Women’s Health Division within 90 days and creates a White House task force to coordinate research and clinical translation. Its remit spans conditions long overlooked or insufficiently studied in women, from cardiovascular disease and chronic pain to endometriosis and menopause. It also calls for better inclusion in trials and more attention to differences in health outcomes by sex. (White House order) 

The ambition is substantial. So is the politics: the order revokes a 2024 women’s-health order and a related 2023 memorandum from the previous administration, while specifying no new research appropriation. A new division could help turn neglected evidence into better care. But an organisational chart cannot run a trial or shorten a diagnostic wait by itself. The test is whether the next signature appears on a budget.


Here is what happened with Claude: during an internal evaluation, an agent generating example interactions reached a police webpage about an unsolved homicide and submitted an invented witness tip through its live form. The submission was flagged as spam and did not proceed to an investigation. Claude had not discovered a person planning a murder. Separately, the parents of 16-year-old Adam Raine, who died by suicide in 2025, sued OpenAI, alleging that ChatGPT’s conversations contributed to his death. Eight US states filed further lawsuits last week alleging harms to young users. Those allegations have not been established by a court. (Anthropic investigation; Raine case reporting; Nebraska attorney general; OpenAI response)

The distinction matters. The Claude incident is a verified, unintended action on a real website during a test. The Raine case concerns alleged failures of care in a real person’s interactions; OpenAI disputes the account presented in the complaint and says it has safeguards intended to direct people in crisis toward human support. A platform must be able to stop an agent before it acts outside its authority and sustain protections when a conversation becomes dangerous. Calling both incidents “AI gone rogue” would spare us the harder work of deciding what each system was supposed to do, what it actually did and who is answerable.


ESMO has the data. Claudia needs the treatment 

On Friday, 23 October, IAPM hosts Personalised Oncology Across Health Systems at IFEMA Madrid alongside ESMO Congress 2026. The gathering traces the story of Claudia from an initial oncology diagnosis through genomic profiling, targeted therapy options, reimbursement and ongoing care. Clinicians, advocates, researchers and industry partners will address a straightforward issue at each stage: when medical innovation offers a path forward, who ensures the patient can actually take it?

Sessions will scrutinize achievable care standards within 24 hours, seven days and one month. Participants will evaluate diagnostic infrastructure, liquid biopsies, clinical trial access and coverage disparities, striving to establish concrete pathway commitments and a cross-sector execution framework. ESMO gathers the scientific breakthroughs in Madrid; this forum focuses on turning those discoveries into routine medical care.

Location: Room A4.2, Mezzanine Level, IFEMA Madrid
Date & Time: Friday, 23 October 2026, 08:30–17:00
Details: [Registration link]


For people with erythropoietic protoporphyria, ordinary sunlight can cause severe pain. On Monday, Disc Medicine reported that its experimental oral drug bitopertin met both primary endpoints in a 183-person Phase III trial. Compared with placebo, patients had a greater reduction in the blood compound associated with the disease and, in the trial’s sixth month, an average of 12.2 additional hours of pain-free time in light per month. The company also reported fewer reactions to light. (Disc Medicine Phase III results) 

That second measure is the story. The FDA declined to approve bitopertin earlier this year when the available evidence did not adequately connect its biological marker to a clinical benefit. This trial was designed to answer a question patients could recognise without a laboratory: can I spend more time outside? These are company-reported preliminary results; detailed data and regulatory review still lie ahead, and the drug is not approved. But the episode shows what rigorous regulation can ask of innovation: demonstrate a change in life, not only a change in a number.


WHO published a practical training manual on Monday for the people responsible for building breast-cancer programmes. It follows the full journey: early detection, diagnosis, treatment, team-based care and patient navigation. Its stated ambition is for at least 60% of newly diagnosed breast cancers to be found at an early stage, when treatment is generally more effective. Partners are adapting the materials for use in Ethiopia, Eswatini and the Philippines. (WHO breast-cancer training manual) 

October can make awareness look like an outcome. It is not. A woman who notices a symptom still needs somewhere to go, a timely diagnosis and a route to treatment that does not dissolve between institutions. The manual is guidance, not evidence that those services have appeared overnight. Its value will be judged at the handoffs: whether a health system can carry a person from the first concern to care while there is still time to change the result.


Bangladesh has recorded about 202,000 suspected measles cases, including 22,000 laboratory-confirmed cases, from the outbreak’s start in mid-March through 9 October. WHO figures cited in a Reuters investigation put deaths at 1,147, with 94% of those reported deaths among children under five. The country vaccinated almost 20 million children in an emergency campaign. Yet another health programme’s target list suggested roughly four million more children in the same age group than the measles campaign had counted. (Reuters investigation) 

This is a failure of reach as well as supply. Political turmoil disrupted routine immunisation; weak records, vacant health-worker posts and missed visits then made the emergency response harder. Officials launched a further campaign aimed at 3.4 million previously missed children. A national total can look impressive while a village remains invisible. Measles does not care whether the child was absent from the spreadsheet or the health worker’s route. Public health has to find both.


Roche’s Germany chief says the company has put future investment decisions in the country on hold while it reviews proposed measures to restrain statutory health-insurance costs. He argues that greater burdens on drugmakers damage trust. Germany’s health ministry calls decisions against the country regrettable and says it wants stable conditions for the industry. Roche says previously planned projects, including an expansion in Penzberg worth more than €600 million, are unaffected. (Reuters)

There is a real policy argument beneath the negotiating language. A public insurance system must control spending; a manufacturer can choose where it puts its next factory or research programme. Patients and taxpayers occupy both sides of that bargain. Roche has not announced a withdrawal from Germany, and the proposed rules are still being contested. But the message is unmistakable: investment has become a lever in the fight over the medicine bill.


Germany’s Merck KGaA has agreed to acquire UK-based Silence Therapeutics in a transaction valuing its equity at about $1.3 billion, subject to closing conditions. The attraction is divesiran, an investigational RNA-silencing treatment being developed for people with polycythemia vera who need regular removal of blood to control the disease. In the company’s Phase II study, the proportion meeting its response measure was 88% with divesiran and 19% with placebo. Phase III evidence is still needed. (Merck KGaA announcement) 

A medicine designed to quiet one gene has made considerable noise in the market. The proposed purchase is a bet that precise control of iron metabolism could reduce the burden of repeated procedures for a rare blood cancer. It is also a reminder that promising science changes owners long before it reaches patients. The acquisition price is known; the eventual clinical benefit, approval and access terms are not. This is Merck KGaA of Darmstadt, distinct from the US company Merck & Co.


A Nature Medicine study published Monday examined genomic, gene-expression and epigenetic features in tumour samples from people with newly diagnosed multiple myeloma. The researchers found that features present before treatment were associated with whether patients had measurable residual disease after an intensive four-drug induction regimen. The work points toward predicting who may clear cancer more deeply and who may need a different strategy. (Nature Medicine study) 

That is the promise of personalised medicine in a difficult form: the same diagnosis and the same treatment can conceal different biological odds. The study does not establish a ready-to-use test that should decide a patient’s care tomorrow. Its associations must be validated for that purpose. But it moves the question upstream. Instead of waiting to learn who responded, clinicians may eventually be able to ask what the cancer was telling them at the start.


23–27 October — Oncology’s evidence test.
ESMO convenes in Madrid. Watch which trial results alter treatment decisions, and which headlines still need longer follow-up. IFEMA MADRID
27 October — Who pays the markup?
India’s Supreme Court returns to medicine pricing, after questioning why action on trade margins has focused on cancer drugs. The next hearing could widen the political fight over prices. barandbench.com
27–29 October — Europe writes its health agenda.
WHO Europe’s regional committee will consider strategies on healthy ageing and AI in health. Watch what ministers adopt, and what they fund. who.int
30 October — Childhood myopia faces the evidence panel.
An FDA advisory committee reviews low-dose atropine drops intended to slow progression in children. Its discussion could shape the regulatory path; it is not itself an approval. FDA

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