Supporting Patients Through Programs that Connect, Build & Inspire

Finding Our True North: Supporting Patients Through Programs that Connect, Build & Inspire

September 3, 2019 5:12 pm

Finding Our True North: Supporting Patients Through Programs that Connect, Build & Inspire

When I get up in the morning, I want to make someone’s life better. That’s why I’ve spent my career working in patient advocacy and health care, and it’s why I made the decision last fall to join Vertex.

I lead our Patient Advocacy team, and we’re focused on keeping the perspectives and insights of patients top of mind as the company creates transformative medicines for patients living with serious, life-threatening diseases, like cystic fibrosis (CF).

We do this by creating programs – in such areas as education, active lifestyles, patient support and more – that offer resources to our patients, their families and their caregivers. To help make sure we continue to deliver on this mission, our team gathered several months ago to create our “True North” – a statement that would act as a guiding principle for us as we worked with patient communities. Here’s what emerged from that meeting:

Working hand-in-hand with the community, we bridge the gap between patients and science.

We also zeroed in on three underlying words – connect, build, inspire – that really got at the heart of what we want our programs to achieve.

Yet there’s another component of our program development. As much as we need clarity around our own goals, we also have realized it’s about listening and asking questions. A lot of presumptions exist around patient and family needs, but at Vertex, we believe our focus should be on listening, learning and understanding.

We recently embarked on a listening tour, where we met with a number of CF organizations. Even though we’ve worked on CF for decades, we’re never going to presume that “we’ve got it,” or that patients have what they need. We asked CF stakeholders such questions as what’s top of mind for you, what’s important to your organization, what are you hearing from the community, and what are your unmet needs?

The insights derived from these types of conversations have then enabled us to build programs from the ground up that reflect patient feedback – instead of creating programs based on our own interpretation of their needs. In this way, we can ensure that our programs truly resonate with our patient communities.

One example of a program that has made a real difference in the lives of patients is our Vertex CF Scholarship program for people living with CF and their immediately family members. Now in its third year, the program recently awarded 85 students each with a $5,000 scholarship to help them pursue two-year, four-year or graduate degrees during the 2019-2020 academic year.

It’s a program that’s unique to Vertex because we know that a patient’s world is so much bigger than simply treatments. A disease like CF impacts the entire family, and I am so proud that we created a program that makes scholarships available not only for patients, but also for parents, children, brothers and sisters. As we strive to improve patients’ lives, we know that supporting the family component is so important, as well.

Today, while we continue to advance our CF research, we’re also expanding our research efforts into other serious diseases with unmet patient needs. As a result, our team is starting to build relationships with new patient communities, so we can create programs that support these families. During one of these recent discussions, a mom told me that she hoped someday Vertex could develop a medicine for her daughter.

To me, that is incredibly inspiring and speaks to how important our True North is in Patient Advocacy.

I have a picture of this mom and her daughter in my office, and it was the first picture I hung up. There is no greater honor than to have a parent say, “I want Vertex to work on a medicine for my child.”