Story at-a-glance

• Nonprofit patient organizations often receive funding from drug companies that’s not always disclosed and is often under-reported
• These corporate-funded organizations are increasingly involved in policy decisions and research, highlighting the potential for serious conflicts of interest
• Drug companies primarily funded activities related to advocacy, campaigning and disease awareness, while support for patients received only 5.9% of payments
• The priorities of drug industry funding were clearly based on PR, not patients, and are also apparently commercially driven, as conditions with the most commercial potential, such as cancer and diabetes, received the most funding
• In the U.S., 67% of U.S. patient advocacy organizations, such as the American Cancer Society, the American Heart Association and the National Organization of Rare Disorders — nearly all of which were nonprofits — received funding from for-profit companies

In the U.K., patient organizations are nonprofits made up of patients and caregivers that offer support and advocacy for those afflicted by certain health conditions.

Although they’re widely perceived as patient-oriented groups that serve the public, they often receive funding from pharmaceutical companies — a significant problem since such organizations are also increasingly involved in policy decisions and research.1

In fact, according to researchers from the University of Bath in the U.K. and Lund University in Sweden, patient organizations are closely involved in drug development and appraisals of health technologies by the National Institute for Health and Care Excellence (NICE),2 which in turn provides guidance to England’s National Health Service (NHS).3

What’s more, the financial relationships between patient organizations and drug companies are often not transparent, with the pharmaceutical industry under-reporting payments.4

Payments Between Patient Organizations, Pharma Under-Reported

In order to evaluate the under-reporting of payments made by drug companies to patient organizations, the researchers compared payment disclosures from 87 companies to 425 patient organizations from 2012 to 2016. While 63, or 72.4%, of the drug companies reported payments, 84 of them, or 96.6% of them, were mentioned by patient organizations.

Further, while the drug companies listed 425 patient organizations, only 200 of them, or 47.1%, reported receiving payments. The number of payments reported by the drug industry was also higher, by 259.8%, than those reported by the patient organizations, as was the value of the payments, by 163.7%.5

“Both donors and recipients under-reported payments. Existing donor and recipient disclosure systems cannot manage potential conflicts of interest associated with industry payments,” the researchers concluded, adding that actual extent of under-reporting is unknown since there’s no definitive list of payments available.6

Drug Industry Largest Donor to Nonprofits

In separate research, the University of Bath and Lund University used drug company disclosure reports, patient organization websites and charity regulator records to look into donations made from 2012 to 2016. During this period, $73 million was donated by the drug industry to such organizations, with the annual sum more than doubling during the study period.7

Overall, 4,572 payments were disclosed by industry, which represented just one-sixth of funding to health care professionals and organizations in 2015 alone, and the number and value of payments to nonprofit patient organizations increased during the study period. While 20% of the total value was represented by the top five payments, small payments occurred most often.

Half the payments were about $6,369 annually or less, but as the researchers noted, “Small payments are potentially important, as findings from the U.S. show that even smaller amounts might affect physicians’ prescribing.”8

For instance, a New England Journal of Medicine study found that although doctors typically receive less than $1,000 a year in such perks, they may still influence opioid prescriptions. In fact, physicians who received perks from drug companies increased their opioid prescription rates by an average of 9% in the year after the payment.9

Further, the University of Bath and Lund University researchers noted, as is the case with payments to health care professionals, the largest donors to patient organizations were drug companies.10

Commercially Driven Conditions Prioritized

As for what activities got funded, those related to public involvement, such as communication related to advocacy, campaigning and disease awareness, were a top priority, receiving 31.2% of funds. Research activities were also well funded, receiving 24.6% of payments, while support for patients received only 5.9% of payments, followed by organizational maintenance and development, which received just 2.8%.

The priorities of drug industry funding were clearly based on PR, not patients, and are also apparently commercially driven, as conditions with the most commercial potential received the most funding. The researchers wrote in the BMJ:11

“In drug discovery, the industry prioritises investing in some conditions over others based on their commercial viability. Cancer in particular has a privileged place.

Our data show a similar pattern: of the 30 condition areas (or their combinations), the top five accumulated £39 423 529 (68.8%), with neoplasms alone attracting 36.4%. The second category — endocrine, nutritional, and metabolic diseases — received 11.3%, and infectious and parasitic diseases 8.0%.

The hierarchy of funding within each condition area also reflected the industry’s commercial priorities. In neoplasms, multiple myeloma attracted £7 495 729 (35.9%), followed by breast cancer (19.6%); 26 other types of cancer attracted less than 10% of funding. Diabetes received £3 741 181 (57.6%), the most of any endocrine, nutritional, and metabolic disease.

The bulk of funding for certain infectious and parasitic diseases went to HIV (37.4%) and viral hepatitis (23.6%). Importantly, the biggest donors in these condition areas have recently launched several high priced drugs. Key examples include Pfizer (palbociclib for breast cancer), Takeda (ixazomib for myeloma), Lilly (dulaglutide for diabetes), Gilead (emtricitabine/tenofovir for HIV and sofosbuvir/ledipasvir for hepatitis C).”

Further, while 30 conditions were represented in the study, funding was concentrated to only a few nonprofits in each, with the top recipient getting an average of 65.6% of the funding within each condition area.12

US Nonprofits Also Heavily Industry-Funded

It’s worth noting that this isn’t a phenomenon that’s unique to the U.K. In the U.S., a 2017 study found that 67% of U.S. patient advocacy organizations, such as the American Cancer Society, the American Heart Association and the National Organization of Rare Disorders — nearly all of which are nonprofits — received funding from for-profit companies.13

Among them, 12% received more than half of their funding from industry. In this case, pharmaceutical, device and biotechnology industries made up a median of 45% of industry funding.14 As in the U.K., the researchers noted that the findings question whether nonprofits are maintaining their independence and raise serious concerns about potential conflicts of interest:15

“Patient advocacy organizations engage in wide-ranging health activities. Although most PAOs receive modest funding from industry, a minority receive substantial industry support, raising added concerns about independence. Many respondents report a need to improve their conflict of interest policies to help maintain public trust.”

The Sunshine Act Highlighted Drug Industry Influence

The Physician Payments Sunshine Act, which is part of the Affordable Care Act, went into effect in 2013. For the first time, the Act required drug and medical device makers to collect and disclose any payments of more than $10 made to physicians and teaching hospitals. The Centers for Medicare & Medicaid Services (CMS) is in charge of implementing the Sunshine Act, which it has done via its Open Payments Program.16

Using the online Open Payments Program from the Centers for Medicare and Medicaid Services, you can easily search to find out what (if any) payments your doctor has received from the pharmaceutical industry, along with the nature of the payments.

Investigative journalist Paul D. Thacker was instrumental in drafting and helping to pass the Sunshine Act. In a feature for the BMJ, he noted, “The Sunshine Act was congressional staff’s attempt to tackle many of the unseemly financial ties between physicians and industry that we kept uncovering when we examined problems with drugs and medical devices.”17

Since it was passed, global change has ensued and many other countries, including Australia, Canada, France, Japan, Scotland, Slovenia and Turkey, have passed or considered similar laws.18 “My concern,” however, Thacker noted, “is that we are spending too much time wringing our hands about disclosing conflicts of interest instead of tackling the well documented problem of financial influence itself.”19

Drug Industry Funding Is Corrupting Research, Public Health

The drug industry’s influence on science is also problematic. It’s no secret that academic research is often funded by corporations. Academia often claims that such funding allows for innovation and does not influence the outcome of the studies. Industry, too, claims that such relationships do not influence the scientific process.

In a tongue-in-cheek essay in the British Medical Journal, titled “HARLOT — How to Achieve Positive Results Without Actually Lying to Overcome the Truth,”20 it’s wittily explained exactly how industry insiders can help make their agenda, in this case drugs, look good:21

• “Pairing their drug with one that is known to work well. This can hide the fact that a tested medication is weak or ineffective.

• Truncating a trial. Drugmakers sometimes end a clinical trial when they have reason to believe that it is about to reveal widespread side effects or a lack of effectiveness — or when they see other clues that the trial is going south.

• Testing in very small groups. Drug-funded researchers also conduct trials that are too small to show differences between competitor drugs. Or they use multiple endpoints, then selectively publish only those that give favorable results, or they 'cherry-pick' positive-sounding results from multicenter trials.”

Another trick used by the drug industry involves foundations. A foundation is a nongovernmental entity that is typically established to make grants to institutions or individuals for scientific and other purposes. Donors often give money to foundations instead of to the university itself, in part, because foundations have a fiduciary responsibility to represent the donor’s interest.

Money given to a foundation can be kept private in order to protect the donor’s identity and does not become public record.22 So, it provides the perfect opportunity for industry corporations to pay for research on their behalf without receiving any public scrutiny for doing so. Likewise, Thacker noted:23

“Researchers have documented corporate influence skewing research in food, synthetic chemicals, risk analysis, pesticides, air pollution, genetic technology, and climate change.

Unlike medicine, these areas of science do not have the same volume of peer reviewed literature documenting corporate influence on academics, journals, regulatory bodies, and research. But these scientific disciplines have an enormous impact on public health.”

The BMJ is among those calling for a reduction in commercial influence in health care moving toward transparency and has launched a global initiative toward that end. In a press release, BMJ’s editor-in-chief, Dr. Fiona Godlee, said:24

“Patients and the public deserve to have evidence they can trust. Commercial influence has no place in scientific research, nor in the education and guidance of clinicians, nor in decisions about diagnosis and treatment. We hope that people around the world support our call for fundamental reforms.”

The journal plans to add more content to the collection to further understanding of the conflict of interest between commercial Industries and medical decisions.

They brought together experts from eight nations in medicine, law and philosophy to propose fundamental cultural changes with the intention of moving away from commercial influence. Hopefully this will prompt an emerging and widespread trend toward independence.