According to The Observer, pharma firms are systematically sponsoring grassroots patient organizations that petition the NHS medicines watchdog to approve the spread of their treatments.

The investigation details that 138 of the 173 medication assessments done by the National Institute for Health and Care Excellence (Nice) since April 2021 featured patient groups that either had a financial link to the maker of the drug being assessed or have since received funding.

Financial interests were frequently not fully stated in Nice transparency filings and many organizations that profited pleaded with England's drugs watchdog, requesting that their medicine be authorized.  

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In one example, In another case, a cancer patient group supplied evidence relating to drugs made by 10 companies – from nine of which it had received funding. The payments raise serious concerns for the drugs regulator about how it manages possible pervasive conflicts of interest and efforts by firms to build relationships with organizations participating in the assessment process.

Former president of the British Medical Association, Prof Martin McKee, stated that the industry funding of patient groups was a “longstanding concern”, adding that “mechanisms for managing conflicts of interest are not fit for purpose.”

'A massive conflict of interest'

Dr. Leeza Osipenko, a former employee for Nice and its previous director of scientific advice, called the issue "a massive conflict of interest. There needs to be a discussion at a government level to decide what is the solution.”

The Observer research showed that the funds collected by charities made up a significant chunk of their income in several circumstances.

A pharma firm paid the Pumping Marvellous Foundation, a modest heart failure charity, £200,000 to participate in the Nice review for their medicine in 2022 and 2023.

When Nice declined AstraZeneca's Forxiga on financial grounds, the charity filed an appeal, stating that the decision had caused "great disappointment", explaining it had "always provided the required information" to Nice.

A company owned by the Migraine Trust charity received £115,000 from Pfizer in “conference sponsorship” and did not declare the funds in 2022 since it did not consider them relevant.

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During an appraisal of Novartis’ drug Kesimpta in 2021 for the treatment of multiple sclerosis, the patient group the Multiple Sclerosis Trust said it had received £1,600 in conference fees from the company in the previous 12 months, although the annual reports suggest the number was more than £230,000 from 2018 to 2021. 

Roy Castle Lung Cancer Foundation is yet another charity that participated in 12 Nice appraisals since April 2021 and failed to disclose details of funding received from 9 out of 10 companies. The charity disclosed that “our funding base is a broad mixture including community, retail, corporate, legacies and charitable trusts.”

Diarmaid McDonald, the lead organizer at Just Treatment, believes the conflicts of interest undermine the Nice appraisal process, noting that "we need proper independent voices that can provide a critical view."

Fundamental rethink of patient groups

The head of investigations at anti-corruption organization Transparency International UK, Steve Goodrich, stated that payments raise “serious questions as to whose interests” the groups were representing, calling for a "fundamental rethink about the resourcing of patient groups."

Nice has responded that it would investigate the issue deeper and that its appraisals were “greatly enhanced by the patient voice,” including “robust processes” that allow it to “make recommendations based on careful analysis of all the evidence” while facing “pressures from across the health ecosystem."

"We recognize that these payments are made, and our committees are aware that both patient groups and their representative charities give their insights from their own perspective and interests.”

According to the Association of the British Pharmaceutical Industry (ABPI), medication corporations are not permitted to fund patient advocacy organizations to campaign for their goods in Nice evaluations

The director of medical affairs, Dr. Amit Aggarwal, stated that “it is wrong to suggest any inappropriate connection between company partnerships with patient groups and the Nice Health technology appraisal process. The industry’s strict code of practice demands that any partnership is transparent and companies must respect the independence of patient organizations at all times.”

AstraZeneca has financial links to the majority of patient groups engaged in Nice assessments of its medications, according to statistics. Since 2021, nine of ten organizations engaged in eight Nice assessments for its medications have received funds from the firm.

“We do not offer donations or payments to charities in exchange for their participation in the Nice process. All of our payments to patient organizations are listed on our website," it stated.

Others, such as The Multiple Sclerosis Trust and the Migraine Trust, refuted any underreported income, stating they complied with Nice policies.

Pfizer reported that charity payments were “in no way related to medicines undergoing the Nice appraisal process” and that its work with patient groups is to aid in “building an understanding of patients’ needs."

A May study at the London School of Economics found that “almost all funds (90%) from pharmaceutical companies were directed to patient organizations… aligned with companies’ approved drug portfolios and research and development pipelines."

The Observer previously reported how the company behind the Wegovy injection drug paid millions to experts and NGOs who endorsed the treatment in Nice filings without accurately revealing their ties to the company.