Claire Richmond lives with acute hepatic porphyria (AHP). She searched for 19 years to find answers to her unexplained pain. She wasn’t diagnosed until she was 32.
She recently had the opportunity to attend the 2021 Porphyria Symposium as a patient advocate thanks to a scholarship from NORD. This year’s symposium was held in October in Chicago, Illinois. It was a 3 day event which included both scientific presentations and patient meetings.
After returning home, Claire reflected on the experience. Part of what she reminisced on is that she felt there was a disconnect between the industry and the patients. Patient lives, experiences, needs, and opinions, aren’t adequately captured in scientific research.
The Conference
Porphyria is a rare disease which involves many medical specialties including neurology, hematology, hematology, gastroenterology, pain management, and more. This led to a rich and engaging conference full with medical knowledge.
It did bring back a lot of memories for Claire. As doctors were taught how to handle a confused patient who shows up in their office searching for answers, Claire was reminded of her own diagnostic struggle.
Unfortunately, as the data was presented, Claire deeply felt that the presentations lacked describing the lived experiences of patients.
As porphyria is rare, each physician doesn’t meet many patients. Without a large sample size, it’s hard for them to truly understand the nuances of patient’s lives. These types of nuances can’t be understood through bar charts. You have to actually talk to patients.
The various scientific sessions were intermingled with patient interviews. Claire describes these as the most valuable window into the patient experience. Claire does wish that there was more discussion specifically on pain management, as this is a huge part of patient’s lives and a huge source of stigma.
A highlight in regard to the patient experience was the Patient Day. Here, doctors, patients, and caregivers came together to have more informal discussions. Unfortunately, Claire explains there was less time for intimate conversations than past events.
Claire discusses that the best experience of all was meeting with other patients who understand what she goes through day to day and can relate to her own experiences, traumas, and joys.
Before Attending an Industry Conference
Claire reflects on a few things she wish she knew before attending an industry conference. First, it’s important to think about why it is you want to go and what it is you hope to gain from attendance. This is especially important because unfortunately, not all conferences take into account patient accessibility in the way that they should. They’re often expensive, travel can be difficult, and they’re often emotionally taxing.
There may be ways to get the information you need elsewhere.
Ultimately, industry conferences aren’t perfect. They’re fantastic for learning, for building connections, for connecting with doctors, and for sharing your story. But, the scientific world has yet to perfectly listen to the patient’s own lived expertise.
