Origins: Addressing the Needs of Patients TODAY
We Listened to People Living with UC
Have you ever been in a room filled with people with the same chronic disease or condition and listened to their stories and experiences? We’ve had the privilege of doing just that with people living with ulcerative colitis (UC). People living with UC told us they were looking for support and education addressing their UNIQUE needs. They were also searching for a sense of community and a forum for connecting with others living with UC. The experience of talking with UC patients was so inspiring, we felt the need to start the National Ulcerative Colitis Alliance (NUCA), a non-profit group focused on the day-to-day needs of the UC community. It really wasn’t a question of if we should start NUCA, but how quickly we could do it in order to make a difference in patients’ lives.
And Now: The Backstory
In 2007, we began developing an advisory board for a pharmaceutical company to include patients and caregivers who have hemophilia B. Our client wanted to better understand the needs of hemophilia B patients and learn how to engage with and serve their community. At the time, it seemed like it would be business as usual, but in fact, the experience of developing this advisory board and working with the patients impacted us in profound ways.
While working, we learned that the Coalition for Hemophilia B, a non-profit advocacy group, had previously identified a gap in support and the need for a group that focused solely on the unique needs of people living with hemophilia B. Other groups were focused on the bleeding disorder community at large, but hemophilia B was inevitably lost in the shuffle because it affects so few people.
Fast forward a few months and we found ourselves at the first advisory board meeting in Philadelphia. This was a pinnacle moment—carefully threading the needle between pharma, patients, caregivers, and advocacy groups. Within the first hours of this advisory board meeting, it became clear that the union of these stakeholders was powerful. We heard, loud and clear, from the patients that they value interactions with other patients above all else.
The patient advocacy group in this case became the key distributor of the educational materials being developed in the advisory boards. This allowed for a greater reach into the patient community and elevated the level of trust in the materials themselves.
Fast Forward to the Creation of NUCA
In 2016, we were tasked with creating another patient advisory board, this time for those living with UC. During the first few meetings it became clear that there was a real need for the formation of a new non-profit patient advocacy group that focuses on the unique challenges of people with UC. Existing groups are geared towards the inflammatory bowel diseases as a whole, and UC seemed to get lost in priority. Some of the groups place their focus on research, which is much needed, but leaves patients in search of education and resources.
So, we created NUCA. We assembled a board of directors composed of UC patients and experts and began the lengthy process of applying for 501(C)(3) status. On October 16, 2017, we received our approval letter from the IRS. NUCA was a go! We were going to have the opportunity to work with people touched by UC and understand how to have a positive impact on their lives.
Inspired by the People Living with Chronic Diseases
People with chronic conditions are some of the most genuine, resilient, and inspiring people we have ever met. They cope with their conditions every day, and they rely on pharmaceutical companies to create and distribute the treatments that manage their disorders. Trust between these two groups is paramount. Over our decade of working with patients and pharma, we have learned clear lessons in how these groups can work together proactively for the betterment of the community. We have seen how funding, grants, collaboration, and ultimately the successes of these relationships can have positive impacts on patients’ lives.
Thanks for reading, and we hope you find the mission of NUCA as inspiring as we have!