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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.”
At the start of their trips to India and Kenya, 2 US families in the hemophilia community would have never expected a global pandemic to keep them from coming back home. Bringing along with them only enough treatment for a short trip, when all flights were grounded, they were suddenly unsure of how they would resupply. That’s when the team at Genentech stepped in. This wasn’t an easy challenge to overcome, but they were determined to get these families the treatment they needed—banding together to solve this unprecedented task.
The first step was locating the families. The Genentech team was notified of the family in Kenya by their specialty pharmacy. News quickly spread to the Access Solutions team, a team that is committed to helping patients get the medicine they need. This is when Jennifer, a Case Manager at Genentech, was contacted for guidance. Little did they know that at the same time, Jennifer was also being notified of a family in India with the same challenge.
At this point, the teams at Genentech realized they had a very unique situation on their hands. Questions about logistics, coverage, and distribution all needed to be answered—and quickly. To make sure all options were being explored, members from Account Management, Strategy, and Operations were all brought together (virtually, of course) to problem solve. “When I step back and look at everything holistically, it was really helpful to have a number of people with different backgrounds. Their experiences really made us look at this problem from all angles and make sure we planned everything out,” says Sophie, Group Strategy Manager at Genentech.
While the team worked out a plan, Jennifer kept direct communication with the family in India. Even if it meant arranging calls before dawn to account for the 10-hour time difference, she was willing to do whatever it took to make sure the family felt supported.
Soon enough, the team was able to forge a path to deliver treatment to the families on time, solving every logistical obstacle along the way. “Seeing how committed everyone was and how we all came together to problem-solve this unique situation was really amazing,” says Jennifer. Three months later, the family in India was notified that they could finally return home.
The team at Genentech worked quickly and decisively, always with one common goal in mind—to help fellow community members in need. No matter how far you may be or how insurmountable a task may seem, the team at Genentech will always work to find a solution, staying by your side every step of the way.
Genentech takes the health and safety of our patients, customers, employees, and local communities very seriously, and we are actively responding to the global COVID-19 pandemic. For more, please visit www.gene.com/covid19 or call 1-877-436-3683.
During this time of social distancing, it can be challenging to stay connected with one another. But hemophilia chapters across the country have stepped up to the task, finding ways to bring the hemophilia community together, virtually.
The Hawaii Chapter had its annual educational weekend for the bleeding disorders community already scheduled for March 21. When everything changed, Executive Director Ziggy Douglas had to quickly transform a 3-day live event into a 1-day virtual experience. “My initial reaction may have been panic, but embracing the challenge is what this community is all about,” explained Angelica Flores, a Genentech Clinical Education Manager. So, to no one’s surprise, the team pulled it off.
The day-long event included virtual presentations, group activities, and a screening of CHALLENGE ACCEPTED Episode 6, “Laugh.” “They enjoyed the energy and enthusiasm that came with the episode — especially at the end of a long virtual day!” said Angelica.
The “Laugh” episode has been a popular remedy during this time. The Illinois and Ohio Chapters hosted virtual viewing parties of the episode in April as a way to bring a little levity to the community. “As Clinical Education Managers, we draw our passion from the community and the experiences we have with them. Since we are unable to meet in person, this online forum worked well as a backup,” said Genentech Clinical Education Managers Ami Seligman and Diana Caito.
The New Jersey Chapter also featured Episode 6 in a number of events. “I think it is a wonderful opportunity for our members to stay connected and share ideas and relate with some of the topics and conversations that are addressed,” said Theresa Coia, Clinical Education Manager.
Going virtual has allowed the community and its leaders to connect in ways they had never imagined. “Seeing people in their real environments helped us get to know them on a different level; we got to see their dogs, their families, into their living rooms, and it really humanized our interactions,” says Renee Derider, a Clinical Education Manager from the New York Chapter. Renee goes on to explain that these virtual events provide an opportunity for families that aren’t usually able to attend live events to meet, connect, and share with new members of the community. “There has been a real silver lining to all of this,” she says.
The community truly hasn’t skipped a beat. The New York City Chapter hosted a video game night featuring the popular Fortnite, as well as a virtual scavenger hunt. The New England Chapter hosted a virtual family “Ohana” camp, and the New Jersey Chapter hosted a trivia night where teens with hemophilia created the questions and ran the show. The discussions at these events have allowed members of the community to share advice and help one another during these unpredictable times. This virtual change may have been an obstacle at first, but as the community adapted, it brought everyone closer together, despite being kept at a distance.
