As European health systems grapple with how to deliver increasingly advanced
therapies, rare disease patients in Sweden still face everyday challenges — from
securing a diagnosis to accessing appropriate care. Although rights are strong
on paper, families often find themselves stitching together services across a
decentralized system.
Ågrenska is a national competence center in Sweden working to bridge those gaps.
It supports people with rare diagnoses and their families in navigating health
and social services. “But there’s a limit to what one organization can do,” says
Zozan Sewger Kvist, Ågrenska’s CEO. POLITICO Studio spoke with her about where
the Swedish system falls short and what must change across Europe to ensure
patients are not left behind.
POLITICO Studio: From Ågrenska’s experience working with families of rare
disease patients across Sweden, where does the system most often break down?
Zozan Sewger Kvist: For 25 years the families have been telling us the same
thing: the system doesn’t connect.
Zozan Sewger Kvist, CEO, Ågrenska
The breakdown is most evident in health care, especially when transitioning from
pediatric to adult care. But it also happens when patients are transitioning
between schools, social services and medical teams. No one is looking at their
care from a holistic point of view. Families become their own project managers.
They are the ones booking appointments, chasing referrals, explaining the
diagnosis again and again. It’s a heavy burden.
That’s largely why our organization exists. We provide families with the
knowledge, networks and tools to navigate the system and understand their
rights. But there’s a limit to what one organization can do. In a perfect world,
these functions would already be embedded within public care.
> Without clear national coordination, it becomes much harder to monitor whether
> families are actually receiving the support they are entitled to.
PS: Access to rare disease care varies widely within many European countries and
Sweden is no exception. In practical terms, what do those regional disparities
look like?
ZSK: Swedish families have the same rights across the country, but regional
priorities differ. That leads to unequal access in practice. For example, areas
with university hospitals tend to have stronger specialist networks and
rehabilitation services. In more rural parts of the country, especially in the
north, it is harder to attract expertise, and families feel that gap directly.
In practical terms, that can mean something as basic as access to
rehabilitation. In some regions, children receive coordinated physiotherapy,
speech therapy and follow-up. In others, families struggle to access
rehabilitation at all. And that’s a big issue because a lot of Sweden’s health
care runs through rehabilitation — without it, referrals to other services and
treatments can stall.
PS: Would a comprehensive national rare disease strategy meaningfully change
outcomes across regions?
ZSK: The problem is compliance, not regulation. Sweden has strong rules but
regions have almost full freedom to organize care, which makes consistency
difficult. As it stands, without clear national coordination, it becomes much
harder to monitor whether families are actually receiving the support they are
entitled to.
A national rare disease strategy would not solve everything but it would set
expectations such as what the minimum level of care should look like, what
coordination should include and how outcomes are followed up.
A draft national strategy was developed in 2024, and there was real momentum.
Patient organizations, health care experts and the government were all involved.
Everyone was optimistic the framework would provide guidance and accountability.
After some delays, work on the national strategy has resumed, so hopefully we
will see it implemented soon.
> Families often feel they need to take on a coordinating role themselves. They
> describe an endless search — calling clinics, repeating their story, trying to
> connect the dots.
PS: Families often describe a long and fragmented path to diagnosis. Where does
that journey tend to go wrong, and what would shorten it most?
ZSK: Coordinated multidisciplinary teams would make the biggest difference —
teams that can look at the whole condition, not just one symptom at a time.
The challenge is that rare diseases often affect multiple organ systems. Several
specialists may be involved, but they do not always work together, and it may
not be clear who is taking responsibility for the whole case. When no one holds
that overview, delays multiply.
Sweden also lacks a fully integrated national health record system, so
specialists may be looking at different pieces of the same case without seeing
the full picture. Families often feel they need to take on a coordinating role
themselves. They describe an endless search — calling clinics, repeating their
story, trying to connect the dots.
PS: Sweden participates in the European Reference Networks, yet you’ve suggested
they’re underused. What’s missing in how Sweden leverages that expertise?
ZSK: The ERNs are a strong, established framework for connecting specialists
across borders. Swedish experts participate, but we are not using that structure
to its full potential. Participation often appears project-based rather than
long-term. Neighboring countries such as Norway, Denmark and Finland are more
proactive in leveraging these collaborations.
I would like to see Sweden invest more in turning these networks into durable
partnerships that support clinical practice — not just research initiatives.
> Rare disease care needs sustained political and financial follow-through.
> Without that, families will continue to carry burdens that the system should
> be managing.
PS: Sweden often falls behind other EU countries in terms of access to orphan
medicines (drugs that treat rare diseases). What needs to change in Sweden’s
approach to ensure patients aren’t left behind?
ZSK: Families are very aware of how access compares across Europe. They follow
these discussions closely, and when a treatment is available in one country but
not another, it is difficult for them to understand why.
In Sweden, reimbursement decisions often come down to cost-effectiveness
calculations. That makes access an ethical as well as an economic question. But
for a family, it is hard to accept that a few additional years of life or
stability are weighed against a financial threshold.
Some families choose to cross borders for treatment. But that can be quite a
complex, expensive process, depending on the kind of treatment.
I think greater transparency and clearer communication about the criteria and
long-term impact — not only the immediate cost — would make difficult outcomes
easier to understand.
PS: You’ve worked with families for decades. Have things materially improved —
and what worries you most if reforms stall?
ZSK: Unfortunately, I cannot say that things have materially improved. When I
look back at the challenges families described 15 or 20 years ago, many of them
are still the same.
There have been some positive developments. Digital access means families are
more informed and can connect more easily with others in similar situations.
That has strengthened their voice.
But structurally, many of the underlying gaps remain. Rare disease care needs
sustained political and financial follow-through. Without that, families will
continue to carry burdens that the system should be managing.
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.
Tag - Advocacy
Europe stands at a crossroads. Cancer cases continue to rise, health systems are
under visible strain and critical gaps in care remain unaddressed. Yet, just as
the need for action grows more urgent, political attention to health — and to
cancer — is fading. Now is the moment for Europe to build on hard-won work and
ensure patients across the continent benefit from the care they deserve.
As negotiations open on the EU’s next long-term budget (2028-34), priorities are
shifting toward fiscal restraint, competitiveness and security. Health — once
firmly on the political radar — is slipping down the agenda. This shift comes at
a critical moment: Europe’s Beating Cancer Plan, a €4 billion flagship effort to
turn the tide against cancer, is set to end in 2027 with no clear commitment to
renew its mandate.
With cancer incidence rising and systems struggling, letting Europe’s cancer
framework fade would be a costly mistake. Across Europe, patients, clinicians
and advocates are sounding the alarm.
> With cancer incidence rising and systems struggling, letting Europe’s cancer
> framework fade would be a costly mistake.
“With 2.7 million cancer diagnoses and 1.3 million deaths each year, Europe must
reach higher for cancer care, not step back,” says Dr. Isabel Rubio, president
of the European Cancer Organisation. “Europe’s Beating Cancer Plan has set a new
course, but sustained funding is now essential to protect progress and close the
gaps patients still face.”
Protecting the status quo is not enough. If the EU is serious about
patient-centered cancer care, it must make a firm commitment to cancer and
confront long-overlooked gaps, namely one with profound impact but minimal
political attention: cancer-related malnutrition.
The invisible crisis undermining cancer care
Nutrition remains one of the most glaring blind spots in European cancer care.
Cancer-related malnutrition affects up to seven out of ten patients, driven by
the disease and its treatments.1 Increased nutritional needs — combined with
symptoms such as nausea, fatigue and loss of appetite — mean that many patients
cannot meet requirements through normal diet alone. The result is avoidable
weight loss that weakens resilience, delays treatment and undermines outcomes.2
A new pan-European study by Cancer Patient Europe, spanning 12 countries,
underscores the scale of this silent crisis: despite widespread nutritional
challenges, support remains inconsistent and insufficient. Only 20 percent of
patients reported receiving a nutritional assessment during treatment, and just
14 percent said their nutritional status was monitored over time — a clear
mismatch between needs and the care provided.
> If the EU is serious about patient-centered cancer care, it must make a firm
> commitment to cancer and confront long-overlooked gaps, namely one with
> profound impact but minimal political attention: cancer-related malnutrition.
International authorities have repeatedly raised concerns about these gaps. The
WHO Regional Office for Europe has warned that without proper training,
healthcare providers lack the tools to screen, diagnose and address
cancer-related malnutrition — highlighting a systemic weakness that continues to
be overlooked.
Patients themselves understand these shortcomings and seek more information and
support. Most recognize nutrition as essential to their wellbeing, yet only 26
percent say they received guidance from their care team. As Antonella Cardone,
CEO of Cancer Patient Europe, stresses: “Too many patients are left to face
nutritional challenges alone, even when these difficulties directly affect their
ability to cope with treatment.” She continues: “Malnutrition is not peripheral
to their care. It is central. Addressing malnutrition can contribute to better
treatment outcomes and recovery.”
Without systematic action, malnutrition will continue to erode patients’
resilience — a preventable barrier that demands attention.
A viable yet under-used solution
Yet, the tools to address malnutrition already exist. In cancer care, systematic
nutritional support has been shown to improve treatment tolerance and support
recovery. Medical nutrition — taken orally or through tube feeding — is a
science-based intervention designed for patients who cannot meet their
nutritional needs through diet alone. Research shows it can reduce
complications, limit treatment interruptions and help patients regain strength
throughout their cancer journey.
“Precision oncology is not only about targeting tumors, but about treating the
whole patient. When nutritional needs are overlooked, the effectiveness of
cancer therapies is compromised from the very start of the clinical journey,”
says Alessandro Laviano, head of the Clinical Nutrition Unit at Sapienza
University Hospital Sant’Andrea in Rome.
The case is equally compelling for health systems. Malnourished patients face
more infections, more complications and longer hospital stays — driving an
estimated €17 billion in avoidable costs across Europe each year. In other
words, tackling malnutrition is not only clinically essential; it is fiscally
smart, precisely the kind of reform that strengthens systems under pressure.
> Malnourished patients face more infections, more complications and longer
> hospital stays — driving an estimated €17 billion in avoidable costs across
> Europe each year.
Ultimately, the challenge is not the absence of tools, but their inconsistent
use. Nutritional care has proven benefits for patients and for health systems
alike, yet it remains unevenly integrated in cancer care across Europe. To
change this, the EU needs a clear policy framework that makes nutritional care a
standard part of cancer care. This means ensuring routine malnutrition
screening, equipping healthcare professionals with the practical skills to act
and guaranteeing equal access to medical nutrition for eligible patients.
Keep cancer high on the agenda and close the nutritional gap
Europe has both the opportunity and the responsibility to keep cancer high on
the political agenda. A more equitable and effective approach to cancer care is
within reach, but only if EU leaders resist scaling back ambition in the next
budget cycle. Europe’s Beating Cancer Plan, a major political and financial
commitment, has strengthened prevention, screening, workforce training and
patient rights. Yet the mission is far from complete. Cancer continues to affect
millions of families and places a significant and rising burden on European
health systems.
Protecting progress means addressing persistent gaps in care. As the EU pushes
for earlier detection, integrated pathways and stronger resilience, nutritional
care must be part of that effort, not left on the margins.
With such a patient-first approach — screening early, equipping clinicians and
ensuring equitable access to medical nutrition — Europe can improve outcomes and
further strengthen health systems. Now is the moment to build on hard-won
progress and accelerate results for patients across the region.
--------------------------------------------------------------------------------
References
1. Ryan AM, et al. 2019.
https://www.danone.com/newsroom/stories/malnutrition-in-cancer.html
2. Ipsos European Oncology Patient Survey, data on file, 2023.
--------------------------------------------------------------------------------
Disclaimer
POLITICAL ADVERTISEMENT
* The sponsor is Danone
* The political advertisement is linked to advocacy on EU health and budgetary
policy. It calls for sustained EU funding and political commitment to renew
and strengthen Europe’s Beating Cancer Plan in the upcoming 2028–34
budget cycle, and urges integration of medical nutrition into EU cancer
policy frameworks. The article explicitly addresses EU leaders and
institutions, advocating policy and funding decisions to close gaps in cancer
care across Member States.
More information here.
PARIS — The United States is calling on the world’s most influential energy
organization to abandon net zero emissions scenario modeling that has informed
much of the global green transition, arguing the targets are unrealistic.
U.S. Energy Secretary Chris Wright made the call to other energy ministers at a
closed-door ministerial meeting of the International Energy Agency in Paris on
Wednesday, two people who were part of the discussions told POLITICO.
The comments met with a muted response from other ministers, the people said.
It comes just a day after Wright publicly threatened to quit the organization
unless it abandoned its focus on the energy transition— a call that several
countries rejected, including the U.K., Austria and France.
The International Energy Agency is a key venue for inter-governmental
cooperation around climate and energy policy but has drawn criticism from the
U.S. for its increasing advocacy for the green transition. Wright on Tuesday
warned the U.S. would quit the IEA outright if it didn’t abandon “leftist
fantasies.”
At the closed-door meeting Wednesday, Wright said the agency should stop basing
its modeling on assumptions that it’s possible to cut emissions to zero, arguing
such targets will never be met, according to four people present.
Doing away with those baseline assumptions would be a significant shift for the
IEA, which has made them central to forecasts that have in turn formed the basis
of global political decision-making around the green transition and underpinned
billions in green energy investments.
Officials familiar with the discussions said Wright’s comments were more
diplomatic than his public rhetoric, casting them as an attempt to rationalize
the more hardline, anti-renewables stance of U.S. President Donald Trump. Unlike
Trump, Wright acknowledges the scientific basis of global warming.
One said that Wright didn’t specifically mention renewables — a key source of
energy in much of Europe — and instead focused on a broader criticism of the
emissions target that other members might find reasonable.
“He’s being diplomatic, saying it’s a fantastic organization,” said the
official, granted anonymity to discuss the closed-door talks. “He very smartly
divided the political from the organizational, saying, ‘Let’s leave politics out
of this, let’s focus on the real world [and] stop wasting our resources on
scenarios that are zero percent likely.”
EUROPE SHRUGS
A steady line of European energy ministers pushed back against Wright’s pressure
on Wednesday, dismissing his calls to abandon the phase-out of fossil fuels and
insisting they would continue building renewables.
Austria’s energy secretary told POLITICO Europe would not be “blackmailed” by
the U.S. on clean energy policy.
“We should not [allow ourselves to be] blackmailed by him,” Austrian State
Secretary for Energy Elisabeth Zehetner said in an interview with POLITICO on
the sidelines of a summit of IEA member countries.
Renewables are key for growth and affordability, Zehetner argued, adding that
the U.S. focus on fossil fuels at the expense of green energy went against its
own interests.
“I can’t understand the argument of the U.S. — they have huge potential in
renewable energy, so for one who wants to make a lot of economic deals, they
reject a lot of economic chances,” she said. “Maybe it’s an ideological thing.”
U.K. Energy Secretary Ed Miliband said, “For the vast majority of countries, the
clean energy transition is unstoppable.” He said the U.S. membership of the IEA
was Washington’s choice, but added: “The U.S. needs to make its own decisions
about whether it stays in the IEA or not. I hope they stay. But that’s their
call.”
EU energy chief Dan Jorgensen also defended the roll-out of renewables. “The
clean energy transition is not some distant scenario. It’s the reality. Not only
for Europe, but around the globe. The deployment of clean energy and
technologies is accelerating because it makes clear economic sense — for growth,
resilience, and long-term prosperity,” he said in a written statement Wednesday.
Canada also joined in. “The United States is free to have a perspective,”
Canadian Energy Minister Tim Hodgson told POLITICO. “What makes the world
interesting is we have a multilateral world … I believe what the IEA is doing
today is showing multiple perspectives. They show current trends.”
Talks will continue on Thursday, with no outcome expected till the afternoon.
LONDON — Reform UK would scrap Britain’s planned carbon border tax if it wins
power, the party’s business and trade chief Richard Tice has said.
Speaking to POLITICO on Tuesday, Tice vowed to ditch the U.K.’s new carbon
border adjustment mechanism (CBAM) as part of a broader rollback of climate
levies.
Reform would look “to promote oil and gas, but also scrap all these levies and
green taxes, CBAM, the whole lot of it all goes,” he said.
Britain is currently drawing up its own carbon tax regime — which would charge
importers of carbon-intensive goods a fee based on their carbon emissions.
Ministers plan to link the regime to the EU’s equivalent scheme as part of their
wider effort to reset post-Brexit trade ties — in a move designed to shield
British exporters from being hit by Brussels’ carbon border tax.
Business groups warn that scrapping the system could backfire.
“It is an illusion that cutting CBAM or cutting carbon prices would have a
long-term benefit for U.K. competitiveness,” said Adam Berman, director of
policy and advocacy at Energy UK.
The short-term consequence of scrapping the policy, he argued, would be to leave
British exporters facing “a substantial new tax at the border on their exports
with Europe.”
In the longer term, Britain would be increasingly locked out of key markets, not
just Europe, Berman said.
“Major trading blocs around the world are doing the same thing,” said Berman.
“In that context, we are going to see a proliferation of CBAMs around the world.
China doesn’t have one today, but you can be certain they will implement one at
some point in the future.
“India doesn’t have one today, but we can be absolutely certain that it will
come as soon as they have a robust domestic carbon price. They will want to
protect their industrial base from unfair competition.”
TICE WARNS EU ‘CHANGE IS COMING’
Tice made clear the carbon border tax would not be the only casualty.
Reform UK has already pledged to shred Keir Starmer’s EU reset if they get into
power. | Pool photo by Andy Rain via EPA
“There are going to be aspects that this government is negotiating with the EU
that we will unwind immediately,” he said. “There will be some significant
renegotiations in a number of different areas.”
Reform has already pledged to shred Keir Starmer’s EU reset if they get into
power — with the EU reportedly weighing a “Farage-clause” to protect the deal
from regressing.
Other than CBAM, Tice pointed to several aspects of the reset, including the
agri-food deal, Erasmus participation, and the SAFE loan program for defense
procurement.
“They need to understand that change is coming,” he warned.
“We shouldn’t be paying vast amounts of money for SAFE, we shouldn’t be
rejoining Erasmus at vast cost for no benefit to ourselves whatsoever,” he
added. “We shouldn’t be dynamically aligning with any of their rules. Remember,
this is an EU where, even though we’re flatlining, actually, Germany and
France’s economies are in even worse shape than our own. Why would you handcuff
yourself to a failing economic model?”
‘PRO-BRITISH’ PROCUREMENT PUSH
Alongside the rollback of green levies, Tice signaled a more interventionist
industrial strategy at home.
More details on a pro-British procurement strategy will be unveiled next week,
he said, centered on a “strong presumption in favor of buying steel manufactured
in the U.K.”
The proposed steel mandate would apply to infrastructure including rail,
defense, housing construction and public buildings. Tice also said the new mega
Chinese embassy should be built using British steel.
Tice acknowledged there are limits to how far such a policy could go. A blanket
mandate to use British steel risks breaching World Trade Organization
non-discrimination rules — a legal constraint that would need to be navigated.
Gavin Newsom’s message to world leaders in Munich: It’s time to start thinking
about the next president.
“Donald Trump is temporary,” the California governor and likely presidential
candidate said during a panel about climate change Friday at the Munich Security
Conference. “He’ll be gone in three years.”
Newsom r has long positioned California as a durable counterweight to Trumpism,
particularly on climate policies that California has expanded as the White House
retreats. He carried a similar banner at an international climate conference in
Brazil last year, casting California as America’s premiere climate mover in
Trump’s absence.
While it’s not unusual for California governors to wield the state’s economic
clout to shape global climate policy, Newsom’s advocacy for the state doubles as
a pitch for himself, allowing him to practice his diplomatic acumen, fortify
relationships with heads of state, and sharpen his pitch for a post-Trump
foreign policy.
He is one of a half dozen potential Democratic presidential contenders offering
a contrast to Vice President JD Vance’s scathing criticism of the continent in
the same forum last year.
On Friday, global leaders suggested they, too, understand a leadership change is
coming, though it is unclear if the next administration will be any more
sympathetic to concerns about climate change.
Asked on a panel with Newsom about how to navigate the Trump administration’s
rollback of climate policies, Vanuatu’s minister of climate adaptation noted
other nations are already used to presidential elections shifting their
relationship with the United States.
“We are waiting for the U.S. to come back on board,” Minister Ralph Regenvanu
said. “It happened once. I think it will happen again.”
BRUSSELS — The U.S. is reorienting its foreign funding program to export MAGA
ideology to Europe — and a growing set of far-right and conservative think tanks
and political groups are lining up to take Washington’s money.
U.S. State Department officials have held early talks about government funding
with representatives of the new MAGA-supporting French think tank Western Arc
and Britain’s Free Speech Union, an advocacy group.
Those approaches were informed by a list provided to U.S. officials by the
Washington-based Heritage Foundation of groups the MAGA-aligned think tank
described as “like-minded.” Other far-right and conservative groups in Italy and
Brussels told POLITICO they would also be interested in support from a U.S.
administration they see as an ally.
POLITICO spoke to representatives from 10 European think tanks and policy
groups, all of them aligned in some way with far-right politics. They described
a burgeoning ecosystem of ideologically-aligned organizations that had rapidly
professionalized in recent years and were working to build cooperation with
similar groups across the Atlantic.
With U.S. President Donald Trump’s second presidency giving European
nationalists and hardline conservatives a champion at the head of the world’s
largest economic and military power, groups on both sides of the Atlantic want
to seize the moment. Their ambition is to repurpose the soft-power tools America
once deployed to spread the gospel of liberalism, to expand their reach and
power and ultimately rebuild the West in their image — a project both sides call
a “civilizational alliance.”
FRENCH CONNECTION
Nicolas Conquer, a former media director for Republicans Overseas France,
launched Western Arc, a self-described “MAGA-inspired” think tank in Paris in
December. Conquer, a French-American citizen, said he had discussed specific
projects that could receive funding with several U.S. State Department
officials.
Western Arc pledges to connect “ideas, people and projects” across the Atlantic
to “organize western civilizational renewal.” Its mission statement aligns
closely with language from the U.S. National Security Strategy, released earlier
that month, as well as a prior essay from Samuel Samson, a senior adviser for
the U.S. State Department.
Conquer said he had been in touch with Samson and others in the U.S. State
Department in the past few months and was exploring ideas for projects of mutual
interest, such as stakeholder mapping or transatlantic trips for targeted
groups, including around the 250th anniversary celebrations of U.S. independence
this July.
“There is this logic, which I think is very healthy, of project-based funding,”
Conquer said.
The U.S. State Department did not answer a detailed list of questions. But in
response to a query about U.S. funding of European organizations, a spokesperson
said: “This is a transparent, lawful use of resources to advance U.S. interests
and values abroad.”
Samson made headlines last year for proposing the use of American taxpayer funds
to support far-right leader Marine Le Pen. He traveled to European capitals last
May to meet with NGOs and civil society groups.
U.S. State Department officials approached The Heritage Foundation in the second
half of last year to ask which organizations in Europe would be viable targets
for funding, said Heritage Foundation Senior Research Fellow Paul McCarthy.
Throughout the postwar era the U.S. has supported projects that promoted
democratic ideals and American-style liberalism. | Andrew Harnik/Getty Images
“We’ve suggested some institutions, just a few names of organizations back in
the late summer, early fall. And maybe that formed the basis of it,” he said.
The amount of money discussed at that time was “tiny.” That was before the U.S.
National Security Strategy laid out a policy of “cultivating resistance” in
Europe and boosting organizations that stood against left wing “censorship” and
migration policies that it said were “transforming the continent and creating
strife.”
“Once they got the imprimatur in the national strategy, it’s really taking off
right now,” said McCarthy, while stressing he had no inside knowledge of the
State Department’s latest plans.
Last week the FT reported that U.S. Under Secretary of State Sarah Rogers was
pushing a funding program for think tanks and institutes, with a focus on
London, Brussels, Paris and Berlin. In December she met with Toby Young, a
British social commentator and founder of the Free Speech Union.
“We’ve discussed the possibility of the State Department funding some of the
FSU’s sister organisations in other parts of the world, but not the organisation
I run,” Young said. He would not be drawn on which organizations he meant, but
the British Free Speech Union is affiliated with similar bodies in Australia,
Canada, South Africa and New Zealand, indicating the U.S. State Department’s
plans may not be confined to Europe.
AMERICAN TRADITION
U.S. government funding for European institutions is not a new phenomenon:
Throughout the postwar era the U.S. has supported projects that promoted
democratic ideals and American-style liberalism. Since the 1950s, Radio Free
Europe floated the sounds of capitalist freedom into Eastern Europe, all on the
U.S. taxpayer dime.
This, along with U.S. philanthropic funding, helped many think tanks and other
organizations grounded in mainstream liberal values flourish in Europe. Many
became highly-networked policy shops that acted as a pseudo civil service,
crafting reports and laws that could be transposed into ministerial
proclamations.
The right has taken note of that playbook.
“There was a time when the right were incredibly unprofessional, unconnected,
and so concerned with their own national concerns that it’s very difficult for
them to see beyond that,” said John O’Brien, head of communications at MCC
Brussels, a think tank funded by a private educational institute in Hungary with
close ties to the government of Trump ally Viktor Orbán.
That has rapidly changed, O’Brien said. Though unlike many networks of
progressive institutions, the right has yet to set up a WhatsApp group for
collaboration — “If there is, we’re not part of it,” said O’Brien — right-wing
operatives and thinkers meet regularly at major events, like the CPAC and NatCon
summit series.
They also invite one another to co-host meetings or attend events as panelists.
From the U.S. side, The Heritage Foundation, which authored Trump’s Project 2025
blueprint for government, is a frequent guest of the European right.
On Tuesday, The Heritage Foundation’s McCarthy appeared on a panel in Rome
co-hosted with the Fondazione Machiavelli. McCarthy said The Heritage Foundation
was fostering ties with groups in Europe through joint summit hosting and
research. Their aim is to push back against “European federalism” and the “green
transition madness” while fostering a vision for families that excludes gay
couples, trans rights and promotes higher birth rates.
U.S. government funding for European institutions is not a new phenomenon:
Throughout the postwar era the U.S. has supported projects that promoted
democratic ideals and American-style liberalism. | Saul Loeb/AFP via Getty
Images
Collaboration among such groups is “growing,” said Fondazione Machiavelli
President Scalea. On its website, the center advertises formal partnerships or
signed memoranda with a series of other right-wings groups: The Heritage
Foundation, the Jerusalem Institute for Strategy and Security, Hungary’s
Oeconomus Economic Research Foundation, and the Center for Fundamental Rights,
which organizes CPAC.
“But it’s most like a friendship,” he said. “Since we have common missions, we
have shared values and shared views of the future … We’re not formally
intertwined, we have no institutional bond and link, we are not exchanging money
or resources … We are just working together because this is making it more
effective for everyone else.”
Scalea added that his institute had a “lot of commonality with the Trump
administration.”
So far he hasn’t heard directly from the U.S. government about funding being
made available to organizations like his, but he said he would look at any
funding proposal. “We will see. But for now, we do not have any concrete
opportunity or thing to look at.”
‘EUROPEAN INDEPENDENCE’
This year, Trump has poured accelerant on existing tensions between Europe and
the U.S. by pressuring Denmark to cede control of Greenland, the world’s largest
island. That left many right-wing groups walking a narrow line between standing
up for European sovereignty and maintaining their ideological alliance with the
White House.
But calls for “European independence” by leaders such as European Commission
President Ursula von der Leyen have presented right-wingers with an opportunity
to frame themselves as the true defenders of the Western alliance.
“It’s quite important, especially in this moment, to maintain a unity inside the
Western world,” said Francesco Giubilei, president of Nazione Futura, another
Italian think tank that has partnered with The Heritage Foundation. “It’s not
easy. We understand that sometimes the position of Trump is different from the
position of Europe. But we think that if in this moment, we create a split
between the United States and Europe, we are doing a favor for China, we are
doing a favor for Russia.”
Some of the organizations POLITICO contacted said they weren’t interested in
funding from a foreign government. But where European laws prevent direct
foreign funding of political parties, some are finding other means of
collaboration.
Gerald Otten, a lawmaker with the far-right Alternative for Germany (AfD) party,
traveled to Washington in January as part of a delegation from the German
Bundestag. Prior to his visit he had been invited by the U.S. embassy to discuss
possible joint work. AfD officials are planning to travel to the U.S. for an
event in March billed as a “counter Davos” by Republican member of Congress Anna
Paulina Luna.
Markus Frohnmaier, a leading AfD foreign policy lawmaker and trustee of co-chair
Alice Weidel, will meet Rogers on the sidelines of the Munich Security
Conference this week.
Scalea, of the Fondazione Machiavelli, said having Trump in the White House gave
groups in Europe a sense they were no longer on the fringes.
“We have an ally, a powerful voice,” he said. “It’s not just a conspiracy theory
that we are saying mass migration is making us weaker as a nation, but it’s
something that is said also by the leader of our alliance. This is obviously
useful for us.”
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.
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Peritoneal Cancer Treatment (PDQ) – Health Professional Version. Available
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following completion of first-line chemotherapy for ovarian cancer using the
MOST (Measure of Ovarian Symptoms and Treatment concerns). Gynecologic
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Available at: https://worldovariancancercoalition.org/about-us/ [Last accessed:
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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).
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and End Results Database. J Cancer. 2024;15:473-483.
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ALL-ONCOC-250039 v1.0
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Disclaimer
POLITICAL ADVERTISEMENT
* The sponsor is AbbVie
* The ultimate controlling entity is AbbVie
More information here.
Second Amendment advocates are warning that Republicans shouldn’t count on them
to show up in November, after President Donald Trump insisted that demonstrator
Alex Pretti “should not have been carrying a gun.”
The White House labels itself the “most pro-Second Amendment administration in
history.” But Trump’s comments about Pretti, who was legally carrying a licensed
firearm when he was killed by federal agents last week, have some gun rights
advocates threatening to sit out the midterms.
“I’ve spent 72 hours on the phone trying to unfuck this thing. Trump has got to
correct his statements now,” said one Second Amendment advocate, granted
anonymity to speak about private conservations. The person said Second Amendment
advocates are “furious.” “And they will not come out and vote. He can’t correct
it three months before the election.”
The response to Pretti’s killing isn’t the first time Second Amendment advocates
have felt abandoned by Trump. The powerful lobbying and advocacy groups, that
for decades reliably struck fear into the hearts of Republicans, have clashed
multiple times with Trump during his first year back in power.
And their ire comes at a delicate moment for the GOP. While Democrats are
unlikely to pick up support from gun-rights groups, the repeated criticisms from
organizations such as the National Association for Gun Rights suggest that the
Trump administration may be alienating a core constituency it needs to turn out
as it seeks to retain its slim majority in the House and Senate.
It doesn’t take much to swing an election, said Dudley Brown, president of the
National Association for Gun Rights.
“All you have to do is lose four, five, six percent of their base who left it
blank, who didn’t write a check, who didn’t walk districts, you lose,” he said.
“Especially marginal districts — and the House is not a good situation right
now.”
And it wasn’t only the president who angered gun-rights advocates.
Others in the administration made similar remarks about Pretti, denouncing the
idea of carrying a gun into a charged environment such as a protest. FBI
Director Kash Patel said “you cannot bring a firearm, loaded, with multiple
magazines to any sort of protest that you want,” and DHS Secretary Kristi Noem
said she didn’t “know of any peaceful protester that shows up with a gun and
ammunition rather than a sign.”
These sentiments are anathema to many Republicans who have fought for years
against the idea that carrying a gun or multiple magazine clips implies guilt or
an intent to commit a crime.
“I sent a message to high-place people in the administration with three letters,
W.T.F.,” Brown said. “If it had just been the FBI director and a few other
highly-placed administration officials, that would have been one thing but when
the president came out and doubled down that was a whole new level. This was not
a good look for your base. You can’t be a conservative and not be radically
pro-gun.”
A senior administration official brushed off concerns about Republicans losing
voters in the midterms over the outrage.
“No, I don’t think that some of the comments that were made over the past 96
hours by certain administration officials are going to impede the unbelievable
and strong relationship the administration has with the Second Amendment
community, both on a personal level and given the historic successes that
President Trump has been able to deliver for gun rights,” the official said.
But this wasn’t the only instance when the Trump administration angered
gun-rights advocates.
In September after the shooting at a Catholic church in Minneapolis that killed
two children, reports surfaced that the Department of Justice was looking into
restricting transgender Americans from owning firearms. The suspect, who died
from a self-inflicted gunshot wound at the scene of the shooting, was a
23-year-old transgender woman.
“The signaling out of a specific demographic for a total ban on firearms
possession needs to comport with the Constitution and its bounds and anything
that exceeds the bounds of the Constitution is simply impermissible,” Adam
Kraut, executive director of the Second Amendment Foundation, told POLITICO.
At the time, the National Rifle Association, which endorsed Trump in three
consecutive elections, said they don’t support any proposals to “arbitrarily
strip law-abiding citizens of their Second Amendment rights without due
process.”
Additionally, some activists, who spoke to the gun-focused independent
publication “The Reload,” said they were upset about the focus from federal law
enforcement about seizing firearms during the Washington crime crackdown in the
summer. U.S. Attorney Jeanine Pirro said her office wouldn’t pursue felony
charges in Washington over carrying guns, The Washington Post reported.
Trump, during his first term, infuriated some in the pro-gun movement when in
2018 his administration issued a regulation to ban bump stocks. The Supreme
Court ultimately blocked the rule in 2024.
“I think the administration clearly wants to be known as pro-Second Amendment,
and many of the officials do believe in the Second Amendment, but my job at Gun
Owners of America is to hold them to their words and to get them to act on their
promises. And right now it’s a mixed record,” said Gun Owners for America
director of federal affairs Aidan Johnston.
In the immediate aftermath of the Pretti shooting, the NRA called for a full
investigation rather than for “making generalizations and demonizing law-abiding
citizens.”
But now, the lobbying group is defending Trump’s fuller record.
“Rather than trying to extract meaning from every off-the-cuff remark, we look
at what the administration is doing, and the Trump administration is, and has
been, the most pro-2A administration in modern history,” said John Commerford,
NRA Institute for Legislative Action executive director.
“From signing marquee legislation that dropped unconstitutional taxes on certain
firearms and suppressors to joining pro-2A plaintiffs in cases around the
country, the Trump administration is taking action to support the right of every
American to keep and bear arms.”
In his first month in office, Trump directed the Department of Justice to
examine all regulations, guidance, plans and executive actions from President
Joe Biden’s administration that may infringe on Second Amendment rights. The
administration in December created a civil rights division office of Second
Amendment rights at DOJ to work on gun issues.
That work, said a second senior White House official granted anonymity to
discuss internal thinking, should prove the administration’s bona fides and
nothing said in the last week means they’ve changed their stance on the Second
Amendment.
“Gun groups know and gun owners know that there hasn’t been a bigger defender of
the Second Amendment than the president,” said a second senior White House
official, who spoke on the condition of anonymity to speak on a sensitive issue.
“But I think the president’s talking about in the moment— in that very specific
moment— when it is such a powder keg going on, and when there’s someone who’s
actively impeding enforcement operations, things are going to happen. Or things
can happen.”
Andrew Howard contributed to this report.
Vice President JD Vance on Friday said the United States will stop funding any
organization working on diversity and transgender issues abroad.
Vance called the policy, which has been widely expected, “a historic expansion
of the Mexico City Policy,” which prevents foreign groups receiving U.S. global
health funding from providing or promoting abortion, even if those programs are
paid for with other sources of financing.
President Donald Trump reinstated the Mexico City Policy last year, following a
tradition for Republican presidents that Ronald Reagan started in 1984.
Democratic presidents have repeatedly rescinded the policy.
“Now we’re expanding this policy to protect life, to combat [diversity, equity
and inclusion] and the radical gender ideologies that prey on our children,”
Vance told people attending the March for Life in Washington, an annual
gathering of anti-abortion activists on the National Mall.
The rule covers non-military U.S. foreign assistance, making the Mexico City
Policy “about three times as big as it was before, and we’re proud of it because
we believe in fighting for life,” Vance said.
That means that any organizations receiving U.S. non-military funding will not
be able to work on abortion, DEI and issues related to transgender people, even
if that work is done with other funding sources.
POLITICO reported in October that the Trump administration was developing the
policy. The State Department made the rule change Friday afternoon.
Vance accused the Biden administration of “exporting abortion and radical gender
ideology all around the world.” The Trump administration has used that argument
to massively reduce foreign aid since it took office a year ago.
Vance said the Trump administration believes that every country in the world has
the duty to protect life.
“It’s our job to promote families and human flourishing,” he said, adding that
the administration “turned off the tap for NGOs whose sole purpose is to
dissuade people from having kids.”
Chris Smith, a New Jersey Republican who chairs the House Foreign Affairs Africa
Subcommittee, called the new aid restrictions “the best and most comprehensive
iteration” of the Mexico City Policy since Reagan. Smith, who opposes abortion,
was also speaking at the March for Life.
But domestic and international groups deplored the expanded policy, noting that
it would make women and girls in some parts of the world more vulnerable.
“History shows that the Mexico City policy not only diminishes access to
essential services for women and girls, but also breaks down networks of
organizations working on women’s rights, and silences civil society,” the
International Crisis Group, which works to prevent conflicts, said in a
statement.
“This expansion will amplify those effects and is set to compound the global
regression on gender equality that we have seen accelerate in the last year,”
the group added.
The expanded Mexico City Policy, which international groups have called the
‘global gag rule’ because of the restrictions it imposes, will limit how
humanitarian groups and other organizations “can engage in advocacy, information
dissemination and education related to reducing maternal mortality, sexual and
reproductive health, and reducing stigma and inequalities anywhere in the world,
with any funding they receive,” said Defend Public Health, a network of
volunteers fighting against the Trump administration’s health policies.
“This would effectively coerce them into denying that transgender, nonbinary,
and intersex people exist,” the group said.
Alice Miranda Ollstein contributed to this report.