A short note before I begin: this is not intended as a promotion of Amgen or of the Summit. It is my personal reflection on four days of meetings, discussions and learning, viewed through the lens of a patient organisation working in cardiovascular health, inherited lipid disorders, early detection and prevention.
Amgen is one of FHEF’s industry partners, and I believe that makes it even more important to be clear about the value of these interactions, but also about the questions patient organisations should continue to ask.
For me, the 2026 Amgen Advocacy Summit in Thousand Oaks “Where insights meet impact” was strategically important because it created something that is still relatively unusual: sustained access to senior company leadership, scientists, medical, policy and advocacy teams, combined with a large and diverse group of patient organisations.
More than 130 US and international organisations were represented across cardiovascular disease, cancer, obesity, rare diseases, bone health, and inflammation. The formal Summit itself took place over two days, but for the cardiovascular community our programme effectively lasted four days.
A small group of leaders of international/non-USA patient organisations began the event 2 days ahead of the main meeting with a visit to Amgen’s campus and laboratories, moving around the large Thousand Oaks site by golf carts. For someone who spends most of her time at the policy and patient end of the healthcare journey, it was useful to see some of what sits behind the word “treatment”. Amgen is a biotechnology company involved across much of the medicine-development pathway: identifying and developing potential medicines, clinical development, establishing manufacturing processes, quality control, production and supply.
The visit helped make something very tangible: the journey from a promising molecule to a medicine that can reliably reach a patient is long, technical and dependent on many different disciplines and decisions. For patient advocates, that creates an obvious question. If science, clinical development, manufacturing, regulatory work, quality and access all need to be integrated throughout the process, why should patient involvement be treated differently?
My conclusion was simple: patient engagement should not be a consultation added towards the end. It should be an active involvement and an operational part of medicine development from the beginning.
Later that day, I recorded an interview focusing on FH, HoFH and elevated Lp(a), including early detection, the role of families, prevention, partnership and what meaningful progress should look like over the next five years. There was also a small but memorable reminder of why awareness matters. I met Eliot from the filming team again, whom I had met the previous year. He told me that our earlier conversation had prompted him to have his cholesterol checked—and he did.
We often discuss screening and prevention in population-level numbers. Sometimes impact begins with one conversation.
The second day began with a global discussion involving Amgen’s medical, market access and policy leadership. The conversations covered some difficult realities: where clinical research takes place, increasing evidence requirements, reimbursement and HTA, access delays, real-world evidence, and the tension between affordability and continued investment in innovation.
What I appreciated most was hearing senior leaders clearly acknowledge that patients and patient organisations need to play a much greater role in shaping these decisions. One phrase from the discussion was deliberately provocative: historically, patient advocacy could sometimes be treated as the “cute” part of the process—useful for a website, a moving story or an event, but peripheral to the decisions that really mattered. Patient advocates in the room strongly challenged that idea. Today, many patient organisations combine lived experience with research, policy expertise, health economics, registries, real-world evidence and implementation knowledge. In our own work at FHEF, this evolution has been very visible. The Q&A also became constructively uncomfortable. Advocates challenged why known barriers to women’s participation in cardiovascular clinical trials continue to exist. If the barriers are understood, representativeness should increasingly be designed into recruitment strategies rather than explained after a trial has finished. We also challenged the sustainability of patient engagement. If companies, regulators and HTA bodies increasingly expect highly skilled patient experts to contribute to research and decision-making, this cannot depend solely on occasional advisory boards or one-year projects. Long-term investment in patient-expert capacity and sustainable patient organisations is necessary if we genuinely want patients to participate as equal partners.
This discussion flowed naturally into the dedicated Global Cardiovascular Disease Policy Forum, where FHEF and the Lp(a) International Task Force (ITF) joined the World Heart Federation, Global Heart Hub, Mended Hearts Europe, EACH and the Asia-Pacific Cardiovascular Disease Alliance. Each organisation shared its priorities and achievements.
For me, this was an important opportunity to present what has happened in Europe over the past few years—including the EU Safe Hearts Plan and the successful work by FHEF, EACH, and partners to strengthen the focus on cardiovascular health, early prevention, early detection and screening, including recognition of FH and elevated Lp(a). I also presented progress from the Lp(a) ITF, led by FHEF. Amgen participates in the ITF as an industry partner, represented by Victoria Tzouma as an industry observer.
One particularly encouraging moment was seeing that work originally developed through the European and international Lp(a) community is now travelling beyond Europe. The Brussels International Declaration on Lp(a) and the evidence on the cost-effectiveness of Lp(a) testing in primary prevention are increasingly being referenced by advocates in the United States. That is an important sign of growing awareness. Elevated Lp(a), until recently a relatively specialised topic, is moving into mainstream conversations around cardiovascular prevention and early detection.
The first formal day of the Summit was probably the most immediately practical for me. Richard Shotton’s keynote on behavioural science, followed by a smaller workshop, challenged a basic assumption that many of us in health advocacy make: if we give people enough good information, they will act. Often, they will not. His examples showed why communication needs to work with human behaviour rather than against it. Concrete language is more memorable than abstract language. Showing that others are already taking action can influence behaviour. Making participation visible matters. And individual human stories can sometimes motivate action more effectively than pages of statistics. That has obvious applications for FHEF. How do we encourage someone to have their cholesterol measured? How do we make Lp(a) testing normal? How do we mobilise people around a consultation or policy ask? How do we encourage compassionate giving and fundraising? The lesson was not to abandon evidence. It was to translate evidence into messages people can understand, remember and act on.
A second workshop, Engaging in Dynamic Times, led by Lynn Hanessian, prompted another useful realisation. What is one of FHEF’s most important strategic assets? Not a report. Not a website. Not even a project. Our community. The leaders of patient organisations and ambassadors across our network are informed, connected and—when there is a meaningful call to action—remarkably willing to act. That is an asset we need to use more strategically.
The session on Generative Engine Optimization (GEO) with Kristin Musselman brought another dimension. People are increasingly seeking health information not only through Google or social media but through AI-generated answers. For patient organisations this changes the challenge. Producing accurate information is no longer sufficient. We also need to make sure that information is structured, visible, findable, authoritative and trusted enough to be surfaced in new information environments. This is particularly important in inherited lipid disorders, where misinformation can easily fill the gaps left by limited awareness.
One aspect of the Summit deserves separate mention. I have attended many healthcare and industry events over the years, but rarely have I seen so many senior company leaders present and directly accessible to patient organisations over several days. The programme included discussions with Executive Vice President Murdo Gordon, senior research and medical leaders, business leaders across therapeutic areas and, informally, members of the company’s most senior leadership. That level of access is valuable—but only if patient organisations use it.
The point should not simply be networking. It should be the opportunity to ask difficult questions, challenge assumptions, explain where systems are failing patients and demonstrate what genuine partnership can achieve.
There is also an important cultural difference. The US healthcare and advocacy environment is not Europe. Patients have a different relationship with insurers, medicines and healthcare providers. Direct-to-consumer advertising makes medicines much more visible to the public. Elected politicians are often directly targeted by advocacy organisations. Questions of access and equity are very real, but they manifest differently.
There is a great deal European organisations can learn from US advocates: being more vocal, making policy asks more explicit, approaching elected policymakers directly and using lived experience confidently. But we should not simply copy the US model. Europe has different health systems, regulatory frameworks and traditions—and Europe itself is far from homogeneous. What works in one country may fail completely in another. There is also much we can share in the opposite direction. The Safe Hearts Plan is a good example of European patient and professional organisations working over several years to move cardiovascular health and prevention higher up the political agenda.
The final day produced perhaps my most important scientific reflection. A plenary moderated by Jennie Freibergs began in an unusually human way. Speakers introduced themselves using childhood photographs and explained how experiences from their early lives had influenced who they became and what motivated their professional work. It was a clever reminder that behind senior positions in research, health, advocacy and business sit very personal histories.
But the session that stayed with me most was Designing Equitable and Trustworthy Solutions, moderated by Amgen Chief Medical Officer Paul Burton, with Suna Avcil, Michelle Geller and Cameron McClure. The discussion touched on digital medicine, new approaches to clinical research and how technology may change evidence generation. It made me think about what I would call generational clinical trials in inherited lipid disorders. Within the same family, we may have a parent with FH or elevated Lp(a) who has already experienced myocardial infarction, stents or bypass surgery and a child with the same inherited risk who was detected early and may never develop clinical cardiovascular disease. Biologically related. Potentially carrying the same inherited risk. But living fundamentally different patient journeys. One is being treated after disease has developed. The other may be living a completely normal life while managing a cardiovascular risk factor from childhood.
As our advocacy succeeds in moving detection earlier, this becomes more than a theoretical issue. Will clinical trials designed around established cardiovascular disease remain sufficient? Are the traditional endpoints still the right endpoints? How do we demonstrate benefit in people whose success should be measured partly by the cardiovascular events they never experience? Industry needs to be preparing now for a greater focus on primary prevention. Earlier detection will eventually require different research questions, different populations, potentially longer follow-up and more thoughtful endpoints. If our goal is to preserve cardiovascular health rather than wait for disease, research must evolve accordingly.
Before leaving for the airport, I joined the final cardiovascular workshop with US patient advocacy colleagues, including Holly Paige from the Family Heart Foundation and many new and familiar peers. It was a fitting way to finish.
There is a great deal we can learn from one another, a great deal we can share, and significant room for collaboration.
Across four days, several messages became clearer for me:
For FHEF, the Summit was therefore strategically valuable not because we agreed with everything we heard, nor because every US approach is applicable to Europe. Its value was in having four days to connect, listen, present our work, demonstrate what collaboration can achieve—including through FHEF and the Lp(a) ITF—and directly challenge some of the people shaping research, policy, access and patient engagement within one of our industry partners. That is what meaningful stakeholder engagement should allow.
The real measure, of course, is whether the insights will meet the desired impact.