n. the easing of hostility or strained relations
I went to the World Congress’s Patient Advocacy Summit last week. It was part of four concurrent conferences addressing advocacy and clinical research. My guess is that the majority of attendees were from pharmaceutical and biomedical companies, both big and small.
For all of you patients reading this, I would also guess that your reaction to that last sentence was an almost involuntary stiffening of the spine and defenses locking into place. If you’re anything like me, your perception of the pharmaceutical industry is mixed. We are grateful that these companies are working on things to save our lives. Angry that the price often limits the most cutting edge of these treatments, without consideration of a patient’s financial situation or level of need. They also haven’t exactly been famous for including us in the development of their new products. Kind of like a toy company failing to consider kids. Doesn’t make a lot of sense, does it?
But I learned something last week. When I first read about the Forum, I thought the conference would be filled with people like me – civilian patient advocates. There were a few, but the patient advocates who filled the ballrooms in Philly were from the pharmaceutical companies.
Before last Monday, I didn’t even know that patient advocacy, outreach, or relations were careers in this industry, but there were lots of advocates there. And they weren’t just there to pay lip service. These advocates were sincere in their desire to close the gap between patients and their companies.
They acknowledged their own role in the disconnect between patients and researchers, and brainstormed ways to get patients more involved in clinical trials at every stage. One way was illustrated by the Parkinson’s Foundation, which has developed a program that works very well partnering researchers and patients. The Foundation keeps a database of advocates that the Foundation knows well enough to assign to specific studies when researchers ask them for patients who would be interested in helping to develop the study.
Pharmaceutical companies, academics, disease association representatives, and patients talked about adherence, and the barriers that keep patients from following drug regimens, including cost, access, even a little about mental health (which I believe is a big barrier to adherence – sometimes negative feelings prevent us from making the choices that are in our best interests.)
I met advocates and researchers from Pfizer, Sanofi, Novartis, Horizon, and Boehringer Ingelheim. There were a lot more I didn’t meet. When I did my follow-up, I got a better than 80% reply rate to my emails. They didn’t have to do that; there would be no consequence if they didn’t reply, and I promised no reward. This reinforces that their interest was genuine.
High drug costs are still a point of contention, but involving patients in the development of new drugs and therapies is a huge step in the right direction. If we patients can find a larger role in clinical studies aside from being subjects, we will all end up with more effective and efficient solutions to some pretty heavy problems. Who would say no to that?
Interested in growing the relationship between pharmaceutical companies and patients? Consider participating in studies to help others whose chronic disease patterns may look like yours.