By: Sheila Talafous, Deputy Director, U.S. Advocacy Relations
Sixteen thousand people are estimated to be living in the United States with hemophilia A. Also known as factor VIII deficiency or classic hemophilia, hemophilia A is a largely inherited disorder in which one of the proteins needed to form blood clots — factor VIII — is missing or reduced.
While it impacts each aspect of life, the way in which young people today are managing this chronic bleeding condition is ever-changing and very different to that of generations past. Due to evolving technologies and advancements in therapies, the window of opportunity for increased lifestyle freedom is greater than ever before. However, it creates a demand for new, tailored resources that support the specific needs and diverse lifestyles of patients of all ages as they journey through life.
One resource that’s been a hallmark of the hemophilia community is the National Hemophilia Foundation (NHF), an organization Bayer has proudly supported for more than three decades.
Next week marks the NHF’s 69th annual meeting, which will be held in Chicago from August 24–26. The meeting has become a place where patients and families, healthcare providers and industry partners all come together to share the latest in treatment and care information, encourage one another, and promote the health and well-being of the entire bleeding disorders community.
This year’s NHF meeting stands-out to us a bit more than in years past. Its theme, “Exploring the New Frontier,” speaks to the exciting medical advancements on the horizon for the broader community, but perhaps also to the thousands of teens coming of age and making the transition to the next chapter in their lives — whether that’s starting their freshman year of high school, going to college or getting their first job.
These major life milestones can be daunting enough, but for men living with hemophilia additional questions and challenges need to be faced as they become adults living with this condition. The community needs to ensure that we provide guidance and support to help young adults reach their fullest potential and do it in a way that perhaps doesn’t make their parents’ hearts skip a beat.
To help support caregivers and patients through all of their stages of their personal hemophilia journeys, Bayer recently re-launched LivingWithHemophilia.com, which includes resources such as:
· Living With Hemophilia — our namesake educational program with tailored content to help address everyday challenges for those living with hemophilia and their families
· Smart Games — helps young children learn hemophilia basics through a series of fun, age-appropriate games
· Transition Ignition — an engaging, interactive experience designed to help transition teens toward managing their own hemophilia care
· Game On — helps young adults go forward with tips on personal accountability for their treatment, staying healthy, maintain insurance coverage, and planning for college and a career
· And Now… Back To You — designed to help adults rediscover their goals, and realize and overcome barriers that might be in the way
Of course, we recognize that more can and should be done to support these men, and boys, through all of their life transitions. Remaining unmet needs, challenges and opportunities continue to be explored by Bayer, the NHF and others, such as use of technology in disease management and how patients are connecting with others online, to help patients throughout the most important times and stages in their lives be more independent, stay connected to others and manage transitions with less worry.
As we look forward to seeing old and new friends and connecting with the community during the NHF annual meeting, we recognize the progress that has been made over the last few decades when it comes to hemophilia care. But, we’re also reflecting on this next generation that will not only benefit from, but help contribute to, the great changes still to come. Hemophilia shouldn’t limit young patients, but rather empower them to be thoughtful, responsible adults with a bright future.
Bayer is honored to be part of the hemophilia community and welcomes your feedback on how together we can continue to support and improve the lives of people living with hemophilia.
References:
1. “What is Hemophilia?” Hemophilia Federation of America. Accessed July 2017 http://www.hemophiliafed.org/bleeding-disorders/hemophilia/
