Focused on the Finish Line: Patient Advocacy and Sanofi
Kate Tighe, US Head of Public Affairs & Patient Advocacy - Immunology, shares her story of her passion for running, people, and what it’s like to support the many patient advocacy organizations across the U.S in her role at Sanofi.
I wasn’t always a big runner, and only started in my late 20’s. To date, I’ve finished 5 marathons, all raising money for causes that I’m really passionate about. What I’ve learned along the way is that running and advocacy are very similar. For starters, you’re working toward a goal that can, in the beginning, feel incredibly daunting. Both are very hard, very challenging in their own ways, and sometimes very lonely. You have to want to finish more than you want to quit – and in a marathon you will definitely reach a point where you want to quit! But marathoners and advocates both know that quitting is not an option. For me, it’s the finish line, and knowing my friends and family are waiting, that keep me focused over those 26.2 miles– and it’s patients, their families and caregivers, that inspire me just the same in my patient advocacy role at Sanofi.
Celebrating at mile 18 (8 to go!) of the Marine Corps Marathon 2016. Kate ran with friends from Boston in support of the Marine Recon Foundation.
I never forget what a privilege and a responsibility it is to work in patient advocacy within the walls of the pharmaceutical industry. The job isn’t about us at all -- it’s about being the voice of the people who ultimately will be impacted by the work that all of us at Sanofi are doing to develop innovative medicines and bring forward solutions for real problems that patients have. If I understand what the community is saying, and what they’re living with, I can then scan my badge and walk into our offices, and talk to our scientists, and our medical teams, and our education teams and I can make sure that what they do is informed by what patients and families really need. How amazing is that? My team and I are advocating for patients to have a seat at a lot of important tables! We need to be visionary, creative, always willing to learn. We also need to be knowledgeable around the communities we work with, the political landscape, how reimbursement works, etc. You really need to know a lot, about a lot, and you need to want to work really hard each and every day. When we get that right, our medicines can transform lives.z
L-R: Joslyn Crowe, Executive Director, NNPDF; Dr. Veronica Munoz, US Medical Affairs, Sanofi; Dr. Justin Hopkin, former Board Chair, NNPDF & dad of Garrett Hopkin, who lives with ASMD; and Kate Tighe await a pivotal data presentation in ASMD (ASCEND and ASCEND-PEDS) to be shared at WORLD 2022.
There’s something so incredible about being out in the community and being trusted with people’s stories. I don’t take that for granted. The innovation that Sanofi is working on impacts not just the person diagnosed with the condition, but rather their entire community - all of the people who are “living with” the condition because they love that diagnosed person. That community is trusting us, as advocates, with their personal stories because they want us to know what their needs are. It’s so important for us to be brave enough to chase the miracles of science -- because that’s what communities are waiting for. Mediocre advances are not going to cut it. If it was you or your family member, would you want mediocre? No way. Our innovation has to be great and so in advocacy, we strive for greatness. Just like in running, when you’re an advocate, you’re in it to finish the race.
I also really love to show off the impact of advocacy. I know the power of the advocacy communities, of united patient voices – I have seen the change they can enact. Advocates are so smart, so sophisticated, so capable. It’s a real joy to see where you can help and then get in there and work with your advocacy partners to change something or to have impact on a problem. Advocacy is more than support groups and Facebook pages. Advocates today are changing laws, increasing budget appropriations, modifying billing codes and insurance benefit design, updating medical textbooks, putting their faces up on billboards in Times Square. Many of those advocates are in a race they never signed up for, and they’re running not knowing when the finish line will come, but they keep putting one foot in front the other and they’re moving forward, and the progress that they’re pushing is incredible. Advocates today are doing things that push the boundaries and that pushes us as industry advocates, so much! It’s AWESOME to watch and I mean that in that they fill me with awe!
When you’re training for a marathon, there’s so much preparation involved. You need to figure out a training plan, incorporate good nutrition, buy the right gear, and hopefully find a community of people. You also need to overcome the fear you have that you can’t do it, or you won’t make it. You need to believe in yourself and hang on to your “why” when you’re in those last hot summer weeks of a training plan and it’s 5 AM on a Saturday and you’re up running while the rest of the world is sleeping. From where I sit, being an advocate is a lot like that distance runner. Good advocates have a strong why. They bring others along with them on the journey because building a community is incredibly important to being successful. They make a plan and they hang on to it. They’re not afraid of the challenge – I think the challenge is what drives most great advocates! They’re not going to quit and if they get knocked down, they’ll get right back up and keep going.
There will be setbacks. There will be challenges. But every time I think “we’re not going to make it”, I think of someone I’ve met from the community, their story, their hopes and dreams, and it lets me change from “we’re not going to make it” to “we have to make it – let’s keep working on the problem”. All we can do is worry about the mile that we’re in – and about the next one when we get there. Keep going. The finish line is ahead. It’s worth the effort!
Coming through her neighborhood just past Mile 17 of the 2022 TCS New York City Marathon, Kate, running in unseasonably hot conditions, spots her friends holding paper towels and cold water. This was Kate’s 3rd NYC marathon and her 3rd time running for Parent Project Muscular Dystrophy.