Are Patient Advocacy Groups Free from Industry Influence?

Find the results of our new paper in the Journal of Cancer Policy.

Patient advocacy groups

Cancer patient advocacy organizations (cPAOs) are instrumental non-profit organizations that offer patient and family support, provide information and education to patients and families, and have an important voice in shaping healthcare and research agendas. One goal of cPAOs is to lobby for rapid, broad access to novel, innovative, high-quality treatments.

Even though some new and often costly oncological treatments offer substantial patient benefits, many show little to no benefit in both clinical trials and real-life settings. We should protect both our patients and society from low-value treatments that lead to unjust healthcare spending.

Our study

When in the Netherlands criteria for cancer drug approvals became stricter, fierce pushback resulted from cPAOs. This prompted us to analyze whether, and to what extent, cPAOs receive funding from pharma. Our results are just out in the Journal of Cancer Policy. We found that more than half of cPAOs receive substantial pharma funding (see figure below).

It is mostly not disclosed on their websites or in educational materials. We argue that cancer patient advocacy organization (cPAO) drug advocacy activities are potentially biased due to pharmaceutical funding. Consequently, they may unwittingly advocate for drugs of questionable benefit, or even for harmful drugs, as well as harmful cancer drug approval policies.

Below are the highlights of our work.

Broad implications

Our findings are comparable to previously published findings in the U.S. An example of the latter was recently shown for cPAO supporting the use of achieving minimal residual disease (MRD) negativity (a test not reflective of any improvement of clinical outcome such as overall survival) for drug approvals in myeloma which will result in harm to many. Here is Vinay Prasad’s take on this specific topic.

Given the important role of cancer patient advocacy organizations (cPAOs), they should be safeguarded from any negative effects of pharmaceutical industry funding on their objectivity.