Major patient advocacy groups defend their independence after research finds pharmaceutical companies paid $96m to patient groups over 10 years.
Patient advocacy groups identified as major recipients of pharmaceutical industry funding have rejected concerns about potential industry influence on their advocacy, saying they have strict governance controls in place to protect their independence and ensure transparency.
The University of Sydney research, published in the MJA, found that pharmaceutical companies paid $95.7 million to 390 Australian patient groups between 2013 and 2022, with almost half going to just 13 patient groups.
Lead author Dr Ashleigh Hooimeyer said the researchers’ main concern was around the potential impact of pharmaceutical funding on the independence of patient advocacy groups.
“It’s really important that consumers and patients have a voice when there are these big policy and funding decisions being made.
“Our concern is that if you’re a group that has received a substantial amount of your funding from a pharmaceutical donor, you may be a bit hesitant to voice your opinions when that conflicts with your donor because you’re concerned about where is your funding coming from next year,” she said.
Dr Hooimeyer acknowledged that the interests of pharmaceutical companies and patient advocacy groups often aligned, particularly when it came to improving access to new treatments.
“If we’re thinking about access to a new innovative and effective treatment, then the pharmaceutical company wants to get that reimbursed by the PBS, and the patient group wants to have access to that medicine without paying for it on the private market.
“Their interests align, and so we would expect the patient group, whether or not they had received funding, to be advocating for that treatment.
“It gets a bit murkier when we have these treatments that may be less effective, or there’s a lot less evidence about their effectiveness.”
The study highlighted that previous research had shown pharmaceutical companies “tend to selectively fund groups focused on diseases for which the companies have new and upcoming medicines”.
Dr Hooimeyer pointed to a relatively high level of funding received by macular disease and other eye health health-related organisations early in the study period, which coincided with the introduction of innovative treatments.
“There were some medicines, so like aflibercept and a few other medicines for macular degeneration, that were quite heavily marketed and promoted over that period,” she said.
Advocacy groups defend independence
The study found the Macular Disease Foundation had received the most pharmaceutical industry funding over the decade, at $6.5 million.
A foundation spokesperson said that they had strong governance arrangements, transparent disclosure, and clear funding agreements that protected the independence of their organisational priorities and policy positions.
“We set our advocacy priorities, do not seek pharmaceutical funding for advocacy activities, and do not recommend therapies or endorse companies. Submissions are guided by our Medical Committee and are not shared with companies before they are lodged,” the spokesperson said.
Instead, they had specific arrangements in place (government by written agreement and board oversight) that determined what pharmaceutical funding could be used by.
“Funding supports programs and research that benefit the macular disease community, such as awareness, early detection, support services and evidence-generating research,” the spokesperson said.
“We do not accept pharmaceutical funding for our Research Grants program or advocacy activities.”
They said any approach to advocate for a specific treatment, policy, or listing would be rejected in line with their Ethical Framework.
“Our advocacy priorities are determined independently and guided by community need. We do not make submissions when a drug is being considered for TGA approval.
“However, where treatments have been assessed as safe and effective by the TGA and are being considered by the Pharmaceutical Benefits Advisory Committee for PBS reimbursement, we may make community submissions to support equitable access to sight-saving treatment for people living with macular disease,” they said.
Rare Cancers Australia and Lung Foundation Australia, the second and third largest recipients of pharmaceutical funding identified in the study, had similar safeguards in place.
Rare Cancers Australia CEO Christine Cockburn said the organisation sought funding from pharmaceutical companies and other sources to deliver projects aligned with its organisational strategy and improve patient outcomes.
“This funding has no influence on our advocacy priorities, which are shaped by patient needs and outlined in our policy reports,” she said.
“Our focus is on driving system-wide change to address inequities for people with rare and less common cancers. The issues we advocate on are selected based on our organisational strategy and our data and insights from patients, not the priorities of other organisations.”
Lung Foundation Australia CEO Mark Brooke said the organisation publicly acknowledged and reported its funding arrangements.
“It is our experience that the pharmaceutical sector both respects and values our independence and by working towards shared goals we can complement each other,” he said.
He said they appreciated the funding as they shared many of the same objectives in increasing the quality of life for patients and their families.
“By working with government, industry, and the community we have together achieved significant health reform including the National Lung Cancer Screening program.”
Calls for stronger regulation
Dr Hooimeyer said the existing disclosure framework, which operated through Medicine Australia’s industry Code of Conduct, left significant gaps in transparency.
“There are some glaring gaps in what is covered by the Code of Conduct,” she said.
“We’ve got these gaps in what is actually reported, but also the way that it’s reported is not helpful.”
One of the key limitations is that disclosure requirements under the code apply only to member companies.
The researchers noted that while these companies represented the majority of Australia’s prescription pharmaceutical industry, membership had changed over the decade, affecting the consistency of reporting.
“This may explain some of the variability we observed in reported payments, as only 19/45 (42%) companies provided reports for all 10 years,” the authors wrote.
Many companies, particularly generic and over-the-counter medicine manufacturers, weren’t members of Medicines Australia. Some had their own trade associations which did not require members to disclose payments to patient groups.
The researchers identified difficulties in determining whether payments to bona fide patient groups were missing from the reports.
“Some of this confusion may be addressed through changes in the 20th edition of the Medicines Australia Code of Conduct, which now requires companies to also disclose payments to healthcare organisations; however, this has only been in place since March 2025,” the authors wrote.
The authors called for mandatory disclosure requirements for all pharmaceutical companies in the Australian market, not just members of Medicines Australia.
“Reports should be managed by an independent body and made more consistent, accessible and usable. A legislated model, similar to how the United States Physician Payments Sunshine Act mandates disclosure of payments to American physicians, could deal with some of these issues,” the study suggested.
Mr Brooke said Lung Foundation Australia supported transparent reporting and was confident their risk strategy, policy, and processes were both transparent and best practice.
“We support transparent reporting and Lung Foundation Australia’s funding, and sponsorship agreements are subject to strict external and internal audit requirements, and our policies are externally reviewed as part of the QIP Program Accreditation.
“We support strong and transparent disclosure measures that ensure the community is fully aware of program support.”
Senior author Professor Barbara Mintzes said greater oversight was needed to maintain public confidence in the independence of patient advocacy.
“We’re calling for greater transparency and oversight of relationships between pharmaceutical companies and patient organisations to help safeguard trust in Australia’s health advocacy sector,” she said.
A Medicines Australia spokesperson said the study demonstrated that their transparency was working as intended.
“By analysing 10 years of publicly disclosed funding data, researchers, stakeholders and the public are able to scrutinise industry support of patient organisations and engage in informed discussion about these relationships. Transparency and accountability are the very objectives underpinning the reporting framework.
“While the study analyses funding flows between pharmaceutical companies and patient organisations, it does not present evidence of inappropriate conduct or undue influence.
“The Medicines Australia transparency and accountability framework extends beyond disclosure reporting and includes the publication of Code of Conduct complaint outcomes and adjudications involving member companies.
“Importantly, scrutiny of these relationships through established transparency and accountability mechanisms has not, in recent years, identified concerns suggesting inappropriate conduct.
“The Medicines Australia Code of Conduct recognises that collaboration between industry and patient organisations can provide value to patients and the healthcare system, while requiring member companies to ensure any support is transparent, appropriate and capable of withstanding professional and public scrutiny.
“Where member companies provide support to patient organisations, that support must be publicly disclosed.”
