Bleeding Disorders Advocacy: Infusing the World with Knowledge

The power of advocacy in the bleeding disorders community
Author: Ethan Forsman

Nickie Fernandez remembers the first time he and his family met with their state senator in Salem, Oregon, in 2015, as part of their local chapter’s state advocacy day.

“My brothers were sweating and stuttering. We were nervous as all get-out,” recalls Fernandez, who was 17 at the time. “But the senator said, ‘It’s OK, you have my full attention. What do you want to tell me?’ It was at that point that I realized that my voice, along with my brothers’, really mattered.”

Getting involved with advocacy at a young age gives kids the ability to stand up and be seen, says Fernandez, whose two younger brothers have hemophilia. “Children are told, ‘you can’ instead of ‘you can’t,’” he says.

Allowing legislators to hear those stories directly from children is also beneficial, says Madonna McGuire Smith, executive director of Pacific Northwest Bleeding Disorders (PNWBD). “It’s incredibly important for our children to tell their stories so that elected officials understand all of the challenges of having an inherited medical condition,” says Smith, who has several family members affected by bleeding disorders.

Your Bleeding Disorders Stories Make a Lasting Impression

“When my son Devin and I met with Oregon state Rep. Dan Rayfield, Devin told his story by showing him all of his blood product bottles,” Smith says. “Months later, Rep. Rayfield saw me in a totally different setting and told me that he had retold Devin’s story many times since then.”

Former Oregon state Rep. Carla Piluso says the stories she’s heard from adults and children with bleeding disorders have made a lasting impression on her.

“When I am asked about the importance of advocacy around hemophilia, or any type of disease, the best value comes from the knowledge of that individual who is challenged by the disease,” Piluso says. “I can listen, I can learn, but I cannot be that disease. I have not lived it. When people are living with hemophilia, it makes them experts.”

Many organizations in the bleeding disorders community offer special Teen Advocacy Training sessions to help them learn how to be effective advocates. “I always find the sessions really impactful,” says PNWBD chapter member Jim Dawdy, who attended his first session 22 years ago at age 13.

Teens are nervous at first, he says, but it gets easier as they get more practice presenting their message and get more confident. “That’s a really powerful transformation, and it extends beyond legislation and is relevant in all aspects of life,” says Dawdy, who has hemophilia. “Being able to effectively communicate your experience and your beliefs is one of the more powerful skills one can gain.”

PNWBD chapter member Daniel Kimberlin agrees but says that advocating to legislators is not the same as advocating for yourself. “With self-advocacy, the responsibility begins with understanding yourself and your condition, educating those around you, expecting a care standard, being as self-sufficient as possible, understanding your treatment including insurance and the financial aspect, and speaking up when things aren’t right,” says Kimberlin, who has hemophilia.

“So many people feel unheard throughout life, but advocating gives you a voice,” Nickie Ferdandez says. “The strongest thing we can do is let our voices be heard, no matter what the topic.”

To learn more about getting involved in advocacy efforts for the bleeding disorders community, visit hemophilia.org/advocacy.