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Sometimes the universe speaks to you, and you need to be ready to listen, according to Devon, the featured guest on the “Buy Green Bananas” episode of CHALLENGE ACCEPTED.
A 26-year-old man with hemophilia A, Devon had recently moved to Seattle, started a new job, and begun thinking about how he could become more engaged with the hemophilia community when he decided to appear on CHALLENGE ACCEPTED.
“I said to myself, ‘I see you, universe, and I hear you, and I think I know what you’re trying to tell me,’” Devon says.
The episode pairs Devon with Mark Skinner, former president of the World Federation of Hemophilia. Together they explore the unique features of aging gracefully with hemophilia.
Like everyone with hemophilia, Devon had been confronting the different facets of this bleeding disorder his whole life, but it wasn’t until he reached adulthood that its full scope became obvious.
“I wore a blue helmet when I was on the playground, but I never really knew how it affected me until I was an adult,” he says. “The reality of it hit me when I was 18, when I became responsible for my own healthcare.”
Along with Mark Skinner and a little levity from the host, Devon explores the importance of staying active in a way that both sustains his health and inspires him. An avid online gamer, he also has a background in theater and dance, but he took a break after getting injured in a production of Grease. After an emotional discussion with Mark while filming CHALLENGE ACCEPTED, he returned to that passion.
“I enrolled in dance classes again,” he says. “I’m planning on taking more and trying to get into teaching dance. That’s a way that I can stay fit and control what movements I do, so I don’t risk damaging anything.”
Beyond the inspiration to maintain his physical health, Devon reports that participating in the show stoked his larger interest in the hemophilia community. “My biggest thing is making sure that I’m an advocate, sharing education about the disease and treatments, especially since we’re getting closer to important breakthroughs. I want to get more involved and inspire others with hemophilia A.”
We sat down with David Quinn, Head Coach of the New York Rangers and guest coach on Episode 7 of CHALLENGE ACCEPTED, for some advice on how to deal with adversity—like a pro.
Q: In the show, you help our guest, Damian, realize that no matter what obstacles come up—related to hemophilia or not—there’s always a way to pivot and achieve your goals. How did your personal experience help you realize this?
A: You know, my experience in pivoting through a difficult time helped me for the rest of my life. The experience I had from the age of 20 to 22—when I was first diagnosed with hemophilia B and realized that playing hockey wasn’t going to be a dream that I could achieve—allowed me to handle adversity throughout life.
That’s all life is really about. Life is about handling adversity, because we all have it at different stages of our lives and adversity never stops. We’re all thrown curveballs, whether it be professionally or personally—there’s going to be adversity.
How did you make up your mind to go from playing professional hockey to coaching it?
My goal getting into coaching was to try to offer the players I was fortunate enough to coach the same impact that my coaches had on me. Not only were they coaches to me, but they helped me through difficult times in my life. When you’re a coach, you have a responsibility not only to the player as an athlete, but to the player as a person. And that was something I really wanted to be able to do when I got into coaching.
Besides coaching Damian on the show, what was your favorite part about filming Episode 7?
Aside from meeting Damian, riding the Zamboni was definitely a great moment. Who would have thought that given all the time I’ve spent on the ice, I had never ridden on the Zamboni?
That does sound like a lot of fun. Any last words of wisdom?
You know, the sooner you realize that anything can happen—and anything can be conquered—the better chance you have of fighting through adversity. That’s something that has stuck with me throughout my whole life.
Mark Skinner’s life bridges 2 eras of hemophilia treatment. The former president of the World Federation of Hemophilia (WFH), he grew up at a time when factor VIII replacement was nonexistent or often limited, used only after bleeding occurred. Now, he’s a part of this emerging era when treatment options are multiplying, and prophylaxis has become the standard of care.
Meanwhile, availability of treatment in the developing world is lagging. The lack of access to care and treatment in developing countries is an urgent and important public health challenge, as the cost of products to treat is prohibitively expensive for the majority of those affected with a bleeding disorder. That’s why Genentech and our parent company Roche are providing prophylactic treatment to as many as 1,000 people with hemophilia A in developing countries over the course of 5 years, with a focus on high-need patients, such as people of all ages with factor VIII inhibitors and children without factor VIII inhibitors. This donation, and others like it, have enabled the WFH Humanitarian Aid program to provide consistent and predictable access to prophylaxis.
Skinner’s efforts in this area are summed up in the WFH commitment to Treatment for All. We spoke to Skinner about his time as president of the WFH and what Treatment for All means in practical terms.
“The goal is to bring prevention and early intervention to the developing world,” says Skinner. “It took 70 years to get to where we are today in the US. By working with partners, we can shorten that time in the developing world.”
“We coined ‘Treatment for All’ because we needed a vision statement everyone could rally behind,” says Skinner. “We knew it wouldn’t be achievable tomorrow, but it gave us a goal that we could move toward each year as we made strategic plans.”
Sustainability is crucial to the WFH strategy. “In the early 2000s, we began asking donor companies to commit to multiyear donations of product.”
Part of planning is understanding everything people with hemophilia need, beyond medicine. “As we go into a country, we assess the kind of healthcare support that’s present. We make sure that we can move medicine through the system well. We need to be sure that healthcare professionals and patients will receive the training they need for prophylaxis.”
Genentech and Roche have worked closely with the WFH to maximize the impact of donated prophylaxis. The WFH identifies those countries that have both a great need for access to care and also have healthcare systems in place to effectively use donated treatment. In this way, they ensure their contributions make the biggest possible difference.
The planning is grounded in a broad understanding of how hemophilia products must be stored and used in order to benefit patients. Genentech and Roche are funding training, lab facilities, and transportation infrastructure, which are all critical parts of patient care.
“Now we can plan, rather than just react to situations,” adds
Skinner.
Living with a bleeding disorder poses many difficulties. When added to the challenges that go with living in a developing country, finding ways to support oneself or one’s family can become almost impossible. Chris Bombardier, who himself has hemophilia B, saw this firsthand in Nepal as he prepared to ascend Mount Everest. During his travels in Nepal, he met with other people with bleeding disorders and saw how they struggled.
Laurie Kelley, the founder of Save One Life, saw these challenges herself and decided something needed to be done. “It’s important to us to find and provide support for these families,” says Bombardier, now the Executive Director of Save One Life. “Our founder was inspired to start the Micro-Enterprise Grant program in 2014, after seeing these challenges on one of her trips.”
The idea for Save One Life was sparked when Kelley spent time listening to one mother explain what would help support her child with a bleeding disorder to become more financially stable. “Something as small as selling cow’s milk could impact one’s life so tremendously in these developing countries,” Bombardier says.
Individuals or families with bleeding disorders in developing countries can apply for grants with business ideas that show promise. Grants can be used for anything from farming to technology services.
Throughout the years, the Save One Life team has seen a variety of ways for people to support themselves. “It’s inspiring to see someone’s pride in their own accomplishment,” says Bombardier. “Just like anybody in any country, they have dreams and goals to provide for their families.”
In the future, Bombardier plans to sponsor more grants and to find more partnerships with other nonprofits. “The commitment from Genentech and Roche has been one of the most exciting things to happen to the program in a while. This stability allows us to offer more.”
