Bringing passion, advances, and hope to the PAH community

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by BioNews Staff |

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An illustration for November's Community Spotlight on people living with pulmonary hypertension.

Samuele Butera photographed in September. (All photos courtesy of Samuele Butera)

This is Samuele Butera’s story:

Alexis. Gerry. Chelsea. Sophia. Dori. These are some of the amazing advocates living with pulmonary arterial hypertension (PAH) whom I’ve been privileged to know in my position leading the pulmonary hypertension (PH) team at Johnson & Johnson. I carry the lessons I’ve learned and continue to learn from them.

Reflecting on what Pulmonary Hypertension Awareness Month means, I feel inspired by the resilience of people living with PAH and the incredible network of care teams, researchers, and advocacy groups that make up this community. Staying connected to the community’s needs and working shoulder-to-shoulder is vitally important. 

Butera and Lenise W. at the PHA conference in June 2022.

At Johnson & Johnson, we know rare disease requires a different commitment. Our team is continuously out in the community meeting with doctors, nurses, and patients to understand where we can bridge gaps in education, communication, and awareness. 

In 2021, we launched Breathe In Speak Out, a platform for patients to share their experiences and to help with empowering them to have important conversations with their care team. Furthermore, to support PH nurses, we established the PHrontline Conversations program, an educational content series for nurses, by nurses, that gives them a place to discuss what’s most important in helping patients along their journey.

Butera with Gerry L. during the 2022 PHA conference.

As we continue to build on a legacy of more than 20 years of innovation in PAH, our team is dedicated to driving advancements in research and development, and in health equity to make a meaningful difference in patients’ lives. Through our efforts, we’ve raised awareness of patient populations at higher risk for PAH, including those with congenital heart disease and connective tissue disease — two diseases that impact people of color at higher rates. We remain committed to driving screenings, providing resources for underserved communities at risk for PAH, and providing dedicated resources in Spanish. 


Butera talks to Sophia E. during the HealtheVoices conference in October 2022.

The courage and strength I’ve witnessed working with PH advocates and healthcare professionals have impacted me personally and motivated our efforts at Johnson & Johnson across R&D, scientific advancement, advocacy, and support programs.

Thank you for letting the people at Johnson & Johnson dedicated to PH be part of your lives, and all of you for being the driving force behind our work.

In recognition of Pulmonary Hypertension Awareness Month in November, the PH Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by PH, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #PHSpotlight, or read the full series.

A Conversation With Rare Disease Advocates