Engaging with patients
Octapharma USA today sponsored the patient symposium “Hope Ignites: Stories to Inspire,” during the Hemophilia Federation of America (HFA) Annual Symposium in Providence, Rhode Island.
The Octapharma symposium introduced attendees to the inspiring lives of four patients with bleeding disorders, including Chris Bombardier, a mountain climber from Denver, Colorado, who is on a mission to be the first person with severe Hemophilia to summit Mount Everest.
“By climbing Mount Everest, I want to show what’s possible for those living with hemophilia when they chase their dreams and manage their care,” said Bombardier, who has scaled five of the world’s seven summits.
“I also want to bring awareness to the fact that not everyone living with this condition will have the opportunity to climb a mountain or chase whatever dream they have because they will struggle to even live. I want us all to recognize that we can't ignore the rest of the world, and we must demand better for them just as we have advocated for better care here.”
Octapharma is sponsoring Bombardier’s historic journey through Nepal to the world’s tallest peak, which will be captured on film by Believe Limited, a digital content agency and production company. Patrick James Lynch, the company’s co-founder and CEO, a Los Angeles, California resident who also has severe Hemophilia, told symposium attendees he decided to give up a successful acting and modeling career a decade ago for the opportunity to use his skills to tell inspiring stories like Bombardier’s.
“I wanted to use my skills to make a difference in the lives of people with bleeding disorders,” said Lynch, who will be creating a documentary series on Bombardier’s journey.
“In addition to telling Chris’s story, the Everest project is an opportunity to show what Hemophilia looks like in a country like Nepal where the average life expectancy for patients is so much different than the U.S. Companies like Octapharma and organizations like Save One Life are making a difference in the developing world, so it’s a landmark moment.”
Octapharma is a Platinum Sponsor of the annual HFA congress. Octapharma USA President Flemming Nielsen said the breakfast symposium was an opportunity for the company’s patient education team to offer a program that would motivate and inspire the 300 attendees.
“We really believe it is important for families and patients to understand they can have a good quality of life while managing their bleeding disorder,” said Nielsen.
“We are determined to help patients maximize their quality of life. While not everyone can climb Mount Everest, with the right support, we hope that most patients can enjoy a healthy life, one without limits.”
Tony and Debra Basa of Easton, Massachusetts, shared the experiences of their son, Andrew, 15, who was diagnosed with Von Willebrand Disease (VWD) at age 3.
“We had no family history of bleeding disorders, so it was a shock,” said Tony Basa. “Andy had complained about knee pain and it turned out that, in addition to a torn meniscus, he had VWD. Our best advice is to take one day at a time – live. And don’t be afraid to ask questions and speak up for yourself. Don’t be afraid to ask for help. We tried to keep him in a bubble at first, but you can be too cautious. You have to keep on living.”
Seth Rojhani, 26, of Denver, Colorado, who is a paraplegic with Hemophilia A, offered similar advice to attendees.
“Obstacles are just speed bumps in the path of life,” said Rojhani, a mechanical engineer who enjoys playing wheelchair basketball and sled hockey in his spare time. “It may take a little bit of extra effort to maneuver over the speed bumps, but they should never be a road block. Put forth your maximum effort and think positive and good things will come of it.”
Headquartered in Lachen, Switzerland, Octapharma is one of the largest human protein products manufacturers in the world and has been committed to patient care and medical innovation since 1983. Its core business is the development and production of human proteins from human plasma and human cell lines. Octapharma employs more than 7.100 people worldwide to support the treatment of patients in over 113 countries with products across the following therapeutic areas: Hematology (coagulation disorders), Immunotherapy (immune disorders) and Critical Care. The company’s American subsidiary, Octapharma USA, is located in Hoboken, N.J. Octapharma operates two state-of-the-art production sites licensed by the U.S. Food and Drug Administration (FDA), providing a high level of production flexibility.
For more information, please visit www.octapharmausa.com.
Engaging with patients