I posted this article 2 years ago after I left Retrophin. I am surprised that is getting renewed attention on LinkedIn, so I am reposting it here – with an update.
I spent 18 months of the past two years working for a start-up pharma that was aiming to be patient-centered. I was thrilled to get a full-time role to practice what I preach.
I was able to convince the clinical team to get feedback from patients at the pre-IND stage – yea!
I was able to form a patient advisory board to continually inform the company on the patient and care giver point of view – yea!
I was able to push patient advocacy from donations and galas to real support and engagement – usually a challenging place for pharma – yea!
I was able to get feedback from patients and caregivers to help the company decide to move forward in building a therapeutically agnostic app to help manage health – yea!
Then …it was over……so…next.
I am back to pushing the industry to be more patient-centered. In the time I was working at the start-up it seems that the world has caught up to my thinking. I am especially thrilled to see that CMS is starting to require outcomes-based contracting beginning 2017. This move will force pharma to measure drug performance based on patient feedback and outcomes. It’s time for me to get back on my soapbox, there is work to do.
UPDATE – Since this was posted the FDA has stepped up its effort regarding patient focused drug development (PFDD). The FDA has issued PFDD guidance that simply says that patients should be included, in a meaningful way beyond being clinical trial participants, in drug development from pre-IND through commercialization.I am excited that we were ahead of the industry on how we worked with patients. Follow this link for more details re PFDD – https://bit.ly/2H7n4dX