Andrés Treviño Fernandez is a passionate advocate for both treating and curing rare diseases, something he knows an awful lot about due to NEMO, the rare immunodeficiency disease his son Andy was born with 22 years ago.
Within 48 hours of his birth, the disease—officially known as nuclear factor-kappa B essential modulator deficiency syndrome—threatened Andy’s very survival ... and it continued to do so for years.
“Before he turned five, Andy had been in the operating room 30 times and had spent more than 1,000 days in the hospital,” says Andrés. “He’d been seen by more than 150 doctors and cared for by more than 450 nurses. It was the most trying time of my life. My wife and I were so worried about our son. So were those who cared for him.”
Yet, for the longest time, no one had any answers about how best to help Andy until one doctor suggested that a stem-cell transplant from a younger sister could save his life. It did—and Andrés has been advocating for people with rare diseases ever since.
Sharing the story, making a difference
While it would be nice to think that Andy’s rare disease was one of just a handful of diseases doctors are unsure how to treat, that’s not the case. “There are 7,000 rare diseases, 95 percent of which are currently without treatment,” says Andrés, who has dedicated his personal life to advocating for research, funding and treatment of such diseases.
He’s also dedicated his career; he is currently associate director of North American Patient Advocacy for Chiesi Global Rare Diseases, a pharmaceutical/therapeutics company focused on developing drugs to both treat and prevent a variety of diseases, including rare diseases.
As a patient advocate, Andrés interviews patients about their wants, needs and concerns, and networks with physicians and other healthcare workers and insurance companies to ensure patients receive the best possible care.
“My role is about listening,” says Andrés. “Listening and building relationships, raising awareness, learning and educating others, and using storytelling to educate and inspire.”
But Andrés’ advocacy doesn’t stop there.
To help others better understand NEMO and how transplanted stem cells saved Andy’s life, Andrés has written a book about his family’s journey and each year he gives a presentation to Harvard Medical School students, sharing his personal story to stress the importance of faster diagnosis and accelerating research for rare diseases. To date, he has delivered 47 talks to more than 10,000 people.
“I started out so nervous and not all that effective,” says Andrés. “But with help from coaches, I’ve learned how to move audiences from apathy to empathy to action. I’ve also learned what details of my and my family’s story are important to include and which just get in the way of the impact I want to have.”
Andrés also has much more confidence. “Although I still get nervous before presenting, I stay focused on the fact that others may find hope in my story.”
Building a community of advocates
To extend his advocacy even further, Andrés—now a certified Living Proof Advocacy (LPA) coach—is helping others harness the power of their first-person stories.
He and his boss, Stuart Siedman, Chiesi’s global head of patient advocacy, realized that a number of Chiesi employees, in addition to working on research and therapeutics for rare diseases, also have lived experience and their own personal stories to share.
So the two men launched the Rare Stories Project, a video series that features six Chiesi employees from around the world sharing their own rare disease experiences and what motivates them in their day-to-day work.
“Some are currently managing a rare disease, some are or have been caregivers to someone with a rare disease, and others have lost loved ones to disease,” says Andrés. “A few have even started their own independent foundations or advocacy organizations to increase awareness, raise money and push for more research.”
The videos will first be shared internally to demonstrate the work of Chiesi Global Rare Diseases and, as Andrés notes, “to remind us of the WHY behind our work.” Eventually, the videos will be shared externally as well: with patients and their families, and with doctors, nurses and other caregivers.
“I started by advocating for my son,” says Andrés. “Not only did that save Andy’s life, it’s grown into both a personal and professional commitment to helping others … and I am so grateful for that.” So are the hundreds of thousands of others who live with a rare disease and benefit from Andrés’ advocacy.
To read more about how pharmaceutical/therapeutics companies can build meaningful relationships with patient-advocates, download our free white paper, “Improving the Quality of Patient Engagement by Centering the Advocate.”
Bev Bachel is a Twin Cities freelance writer who writes about health and advocates for people with cancer, as well as teens and people 50+. She’s also the author of What Do You Really Want? How to Set a Goal and Go for It!
