It’s Complicated: The Industry/Patient Advocacy Organization Relationship

Last week, Adam Feuerstein of STAT+ posted a news story that underscored the complexity of relationships between patient organizations and pharmaceutical companies.  See story here.  

According to STAT, the company, Sarepta, asked a patient advocacy organization (Parent Project Muscular Dystrophy, or PPMD) to delete from a publicly posted video a clip of a mother’s pointed criticism of the company, which has a recently approved gene therapy for Duchenne.   

Since the article was published, Sarepta has confirmed the request to remove the video but did not clarify why the ask was made. PPMD responded to the article with a broad statement noting frustration with the pace of drug development, calling for consistent release of data by companies, and asserting that advocacy is at its best when coalescing the power of families to apply pressure and demand change. 

The unfolding of this story speaks to the delicate balance of the industry/patient advocacy relationship: the importance of industry transparency, the difficult line that advocacy organizations walk to maintain independence, and the obligation of all stakeholders to acknowledge and respect that patients are putting their lives on the line to advance research. 

Here are some of our takeaways from this situation:

  1. Nonprofit patient organizations are often pathfinders in advancing the science, changing policies, and advocating for innovation. At the same time, they must maintain a delicate balance between accepting support from industry while maintaining their necessary integrity and independence from industry.  Engagement is important for progress, but mutual respect for boundaries is critical to uphold the integrity of the process.
  • Views of patients and patient advocates toward gene therapies are often complicated and emotional, because a decision to try one therapy may rule out the possibility of trying another one down the line that may offer improved outcomes.  No parent wants to face a decision about their child’s treatment without having the full picture of the treatment’s value and its clinical performance over time.  Rx4good has conducted extensive interviews with patients across rare diseases, and gene therapy hesitancy and fear of the unknown is very real. To address the emotional tightrope that patients and families walk between their desire to support the advancement of new therapies with their fear of making an irreversible decision, companies must commit to doing whatever they can to clarify the science, ease the therapeutic experience, and provide ongoing support to address those fears and hesitations.
  • Industry faces compliance and legal constraints in what it can say about its therapies and what can be said by others about them to ensure fair balance, a process for prompt adverse event reporting and adherence to compliant scientific exchange.  The industry guidelines set forth by associations like PhRMA and EFPIA also help industry maintain appropriate guardrails with healthcare professionals and advocacy organizations.  The more informed advocates and families are—both about these industry guardrails and the reasons they are in place—the more productive industry/advocate interactions will be, hopefully resulting in an increased level of trust. 
  • Companies should be held accountable to patients to continue moving toward a better, more equitable healthcare system.  Every public meeting carries with it the potential of someone expressing uncomfortable opinions.  Having publicly stated principles of corporate behavior that include: transparency in patient and organization interactions, respect for patient organization independence, and a commitment to listening to and acting on patient feedback can demonstrate that a company has the right intentions; that they are open to dialogue and hearing perspectives from patients’ and families’ lived experiences—all of which will help guide actions to bridge differences and build trust. In addition, preparing in advance for all potential scenarios and responding expediently and with candor when issues arise can help defuse misunderstandings by demonstrating that the commitment to principled behavior is real in both words and actions.   

In the end, sometimes it is difficult experiences such as this that prompt reflection, understanding, and ultimately change, and that demonstrate the power of advocacy to further progress for patients and families.

Rx4good is a patient advocacy consultancy that helps companies navigate the patient advocacy landscape by fostering trusted relationships built on a shared commitment to put patients first.  To learn more about our services and how we can support your patient and advocate engagement, reach out to Ann Moravick at ann.moravick@rx4good.com or Heidi Adams at heidi.adams@rx4good.com .