Patient organisations are important advocates for unwell people. Their support networks are essential. Their campaigns for better access or new medicines carry weight. Yet these activities can often depend on the industry’s most powerful actors: Big Pharma itself.
Drug companies poured €110m into patient groups in the EU, Norway, Switzerland and the UK in 2022, Investigate Europe revealed on Monday (16 September).
Pharma companies like Pfizer, Novo Nordisk and AstraZeneca are funding everything from advocacy and campaigning to media projects and podcasts.
In turn, patient groups lobby authorities for medicines made by their corporate backers. But some pan-European movements are majority-funded by industry and others champion blockbuster drugs like weight-loss jab Wegovy.
“This funding is used as a vehicle by pharmaceutical companies to achieve their aims,” said Dr Margaret McCartney, a British GP who has spent years studying conflict of interest issues. “There is a massive risk to the independence of these patient groups.”
Analysis of transparency disclosures shows that the 33 members of Efpia, the European Federation of Pharmaceutical Industries and Associations, made over 11,000 payments to groups in 2022. But in hundreds of cases, no specific details were given about the use of the funds. Efpia said it has “led the way in bringing greater transparency” but admitted that the disclosure landscape is “fragmented”.
US multinational Gilead was the biggest donor, giving €12.8m, followed by Novartis, Pfizer, Roche, Sanofi and Johnson & Johnson. Together, these firms handed out more than half of the total funding. Some patient groups admit they rely “too much” on the money but several said that alternative income streams are scarce.
“This funding is used as a vehicle by pharmaceutical companies to achieve their aims.” — Dr Margaret McCartney
Payments were made to more than 3,000 groups. Of these, 487 received at least €50,000 each and 24 got more than half a million. A significant share went to groups supporting chronic or rare diseases and areas where firms have new or expensive treatments. In comparison, only around two percent went to support those working on addiction or mental health issues.
“The landscape is dictated by where the money goes,” said Dr McCartney. “It’s a commercial decision by companies about what are seen as good investments.”
Funding for lobbying
The International Federation of Psoriasis Associations (IFPA), which supports people with chronic skin conditions, has been almost fully-funded by drug firms.
Executive director Frida Dunger said IFPA has strict ethical policies and is “guided solely by our mission to improve the lives of people” with the condition. And the group is trying to diversify its funding and has hired a fundraising manager, Dunger said.
Groups working on haemophilia and other rare blood diseases were given more than €3.3m. The conditions affect less than 0.03 per cent of the EU population, according to the European Haemophilia Consortium (EHC), which received over €600,000 from CSL Behring, Sanofi, Roche and others.
Medicines for these diseases are expensive. CSL Behring’s haemophilia B gene therapy, Hemgenix, has a reported price tag in the millions. It was approved for use in Europe last year. Others, such as Roche’s Hemlibra medication for haemophilia A, are also priced high.
“Companies sponsor chronic diseases where there are also costly interventions,” said Claudia Wild, CEO of the Austrian Institute for Health Technology Assessment. “If firms were that altruistic they could pay into a central pot and then not know which patient group is given the money. But they do not. It is all about relationship management.”
The EHC said it “primarily relies” on industry money, in part because public funds target more common conditions. CEO Olivia Romero Lux said the group pursues diverse funding and is open about its finances. “Without [corporate] contributions, the EHC would not be able to fulfil its mission… to improve access to diagnosis, care, and treatment for people with bleeding disorders.”
Patient groups offer vital support for their communities. But they can also be a powerful asset for drugmakers wanting to market their medicines in a country. Positive public messages about the merits of a drugs or supportive statements to authorities can go a long way.
Countries with notable public and political influence, and the biggest markets, received almost all the funds. Groups in the UK accepted €20.7m, followed by those in Belgium – home to many EU groups in Brussels – France, Italy, Spain and Germany. In contrast, organisations in Malta received less than €10,000.
“Advocacy, public engagement, and lobbying – these are the key causes that the industry wants to fund. It is structural-level influence,” said Dr Piotr Ozieranski, a lecturer at Bath University who has studied funding in the UK and Europe.
Swiss firm Novartis gave over €180,000 to Heart UK. The charity previously submitted evidence to the UK regulator supporting the approval of Novartis’s Inclisiran, a drug to lower cholesterol. After its approval in September 2021, the British Medical Association raised concerns about the lack of long-term safety data and possible unknown future side effects of the medication. Data released by Novartis in 2023 said the drug was proved to be safe and consistently effective. Heart UK did not respond to requests for comment.
Millions went on marketing and sponsoring conferences organised by patient groups. “There is a direct, linear relationship,” said Wild. “Patient groups are better marketing managers than pharma companies because they are seen as neutral or objective.”
This is particularly evident in the case of Novo Nordisk, which manufactures Wegovy, the blockbuster anti-obesity drug. The Danish corporation gave more than €300,000 to European obesity groups in 2022. This included €46,000 to the UK’s All About Obesity (AAO) to help launch its website. In the media, its founder Sarah Le Brocq, who also sits on a Novo Nordisk expert panel, has heaped praise on the treatment. The group said Novo Nordisk had “no influence” over the website and it retains full editorial control.
The much sought-after drug is not without controversy. “Wegovy has lots of problems attached to it. Not least that once you stop taking it the weight will usually go back on again,” said Dr McCartney. “Patient groups funded by pharma are helping to create a market and a dependency on this kind of medication.”
Eli Lilly gave AAO €29,000 for “corporate membership”. Its drug Tirzepatide, branded as Mounjaro, was approved for weight loss in the UK last year and in Europe this April. The group gave a supporting statement to the UK regulator prior to approval.
After being contacted by Investigate Europe, AAO updated its website. “On review we have agreed that adding a declaration of interest section on the website allows full transparency,” Le Brocq said. She said there were no conflicts of interests with funders, adding that firms will obviously profit from the medications “but that doesn’t mean that the science is wrong”.
“Patient groups are better marketing managers than pharma companies because they are seen as neutral or objective” — Claudia Wild
She added: “As obesity medicine becomes more well-known and treatments are more widely available, it will become much more like other areas such as diabetes, heart disease and asthma where it is usual to have pharma sponsorship for learning events. Whether this is considered acceptable is something for the medical profession as a whole to decide.”
Novo Nordisk said: “Patient organisations are highly professional and used to managing multiple stakeholders and interests while retaining their independence.”
Lobbying the EU
There are hundreds of examples of companies funding marketing and media activities. In Italy, Roche gave around €140,000 to the Omnicom Public Relations Group. The global PR firm, listed as a patient organisation in its disclosure, was given the money to help run a series of patient talks and events on the future of medicines.
The British Skin Foundation benefited from a €29,000 payment from Sanofi to feature a TV series. “Sanofi UK has purchased an ITN Productions 'Ages of Our Skin' programme segment reflecting a non-financial in-kind contribution to support British Skin Foundation involvement,” Sanofi wrote in its disclosure documents, adding that it had “no editorial control or input” on the broadcast.
The charity said Sanofi had “no influence” on their involvement and without the funding they could not have contributed to the show. “We use such segments to talk about our work and/or highlight important, topical skin health matters,” a spokesperson said.
“It is often about socialising patient groups to think about policy issues in certain ways that are consistent with how drug companies would approach them. It is about shaping how things are perceived and talked about,” Dr Ozieranski said.
“It is often about socialising patient groups to think about policy issues in certain ways that are consistent with how drug companies would approach them” — Dr Piotr Ozieransk
The analysis reveals the strong ties that companies have with groups operating in EU circles, with around €10 million going to influential patient bodies in Brussels.
The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) took almost €640,000. It is part of a working group at the European Medicines Agency, the continent’s regulator, and an interest group in the European Parliament. In 2022 roughly two-thirds of its income came from the industry, the group said.
The EFA has “sustainable corporate partnerships” and relies on multiple companies for support, CEO Susanna Palkonen said. She added that changes to EU funding initiatives meant the organisation was no longer eligible for certain public funds.
Another recipient in Brussels was the International Diabetes Federation (IDF), the largest beneficiary overall. According to disclosures, the umbrella organisation received €1.6m. However, IDF Global said it received €1.45m, and IDF Europe accounts show it took €460,000 from Efpia companies in 2022. Neither responded to questions asking for clarification about the differences in disclosed totals.
IDF Global said half of its income in 2022 came from industry. “We believe that pharmaceutical companies can be valuable partners in the diabetes community. Therefore, we engage in partnerships with responsible corporate entities and foundations to further our mission,” the group said.
Disclosures were introduced in 2015 when Efpia launched an initiative obliging its members to publish the support given to doctors, health associations and patient groups, alongside a description about the funding. Under the scheme, which is not legally binding, firms only have to make public the last three years of data.
“The Efpia Code sets a minimum standard for Europe and individual countries have the option to go beyond the Efpia code based on their local requirements and cultural attitudes to transparency,” an Efpia spokesperson said.
There is a lack of consistency in how disclosures are published. Some firms limit the ability to scrutinise data or prevent downloads altogether.
“The rules are set and policed by the industry,” said Dr Ozieranski, who thinks Efpia should set up a central database with all disclosures. (In the US, for example, the federal Open Payments database compiles disclosures from drug firms.) “The transparency of drug companies is a can of worms… even when funding is published it varies, it’s categorised differently, lacks consistency, and figures can be highly aggregated.”
An Efpia spokesperson added: “Self-regulation offers greater efficiency and adaptability. It can respond far more quickly to changes in how the market operates or societal expectations than more bureaucratic, expensive legal approaches which can take years to implement.”
The disclosures make it clear how dependent some groups are on the money. Yet many would not survive without such payments, Dr Ozieranski said. As in other areas, like higher education, industry funding has become necessary in the absence of public sector or other support.
Potential conflict of interests
Data accessed from 13 of the 24 most-funded groups shows that in three cases, the funding accounted for over 90 per cent of annual income and in six it was more than 50 percent.
The largest share overall went to cancer groups. Women Against Lung Cancer in Europe accepted over €430,000 from multiple donors, accounting for around 75 percent of the Italian charity’s budget, according to its secretary, Stefania Vallone. She said they are autonomous, but do rely “too much” on the money.
“I have asked companies that have nothing to do with pharmaceuticals [for funding], but I often don't get any results – many don't want to put their name next to lung cancer patients, because there is still a stigma attached to a disease that in the past was mainly associated with smokers,” Vallone explained. “And so in the end I turn to pharmaceutical firms because it is easier to get the money from them.”
The European Patients Forum, an umbrella group, relied on industry for two-thirds of its 2022 income, but no private funder accounts for more than five percent of its budget.
Executive director Anca Toma said “greater and sustainable public funding” is needed, but added: “Pharmaceutical companies and patient groups sometimes have shared interests and it is natural for them to cooperate in, or fund, areas they specialise in. In my experience, pharma companies that fund EPF… do not ask for anything in return.”
It is now such a cornerstone of income that very few groups publicly refuse the money. One that does is YoungMinds, a national mental health charity in the UK.
Tom Madders, its director of campaigns, said the support they provide comes from mental health advisors and young people with lived experience. “It is crucial that this information is impartial, and that people feel that they can trust us. We do not accept donations or work in partnership with companies manufacturing pharmaceuticals, as we feel this may undermine our perceived impartiality.”
“Pharmaceutical companies and patient groups sometimes have shared interests and it is natural for them to cooperate in, or fund, areas they specialise in" — European Patients Forum
Salud Mental, which represents more than 300 mental health associations across Spain, took a similar decision in 2018. “There was an intense debate in the organisation, but most of us think the conflicts of interest that receiving industry funding can generate are very evident,” president Nel González said.
The 33 members of Efpia were contacted for comment. Among the 24 that answered, 10 provided entirely or partly identical responses. All denied influencing groups.
This artcile was first published on Investigative Europe website. You can find all information about the data analysis and methodology document here.
Investigate Europe is a Berlin-based a team of investigative journalists focusing on in-depth European issues, using techniques such as open source reporting, data journalism and freedom of information requests. The organisation is registered as a not-for-profit European cooperative.
Investigate Europe is a Berlin-based a team of investigative journalists focusing on in-depth European issues, using techniques such as open source reporting, data journalism and freedom of information requests. The organisation is registered as a not-for-profit European cooperative.