Revolutionizing Hemophilia Advocacy: Unifying Voices for a Brighter Future
The landscape of hemophilia care has undergone a remarkable transformation in recent decades, marked by momentous advancements in treatment, shifting societal attitudes, and an expanding scope of advocacy efforts.
This evolution has not only redefined the medical approach to bleeding disorders but also empowered individuals with these conditions to navigate their lives with greater confidence, resilience, and purpose. The integration of innovative treatment modalities, changing perspectives on capability, and an increased focus on advocacy have collectively propelled the bleeding disorders community towards a future characterized by inclusivity, equity, and access to comprehensive care for all. This progress is a testament to the community's strength, unity, and unwavering commitment to creating a brighter future for those affected by bleeding disorders, regardless of their background or circumstances.
Evolution in Hemophilia Care: Diagnosis and Treatment
The speakers shared their insights on the remarkable evolution in hemophilia care over the last five decades, showcasing a continuum of advancements in diagnosis, treatment, and holistic management strategies. Clive Smith, Global Leader in Hemophilia & Chairman of the Board at The Haemophilia Society, expressed, "Today, we have the potential for individuals with bleeding disorders to lead relatively normal lives with a normal life expectancy, thanks to the transformation in treatment accessibility and quality." This optimism is a result of the shift from reactive to proactive care strategies, marked by the significant impact of clotting factor concentrates. Tirsa Carcamo Bonilla, Project Lead at Honduran Hemophilia Society, emphasized, "With the availability of these concentrates, we've flipped the switch in many people's lives, enabling them to manage their conditions proactively and live fuller lives."
The panel highlighted the multifaceted significance of prophylactic measures, which have substantially elevated the quality of life for individuals with bleeding disorders. Cesar highlighted, "Prophylactic treatment, coupled with refined home-based care methodologies, has significantly altered the trajectory of managing these conditions." By implementing proactive strategies such as prophylaxis, individuals with bleeding disorders can now pre-emptively address challenges and optimize their outcomes.
The speakers also highlighted the global impact of these advancements, emphasizing their dissemination beyond well-resourced regions. Chris Bombardier, Executive Director at Save One Life, stressed, "We must ensure health equity for people with bleeding disorders around the world." Efforts are being made to bridge gaps between developed and developing nations, making improved home-based care, prophylaxis, and specialized treatments feasible in diverse geographical settings. This is a significant step toward achieving inclusivity in hemophilia care on a global scale, ensuring that all individuals with bleeding disorders have access to the care and resources they need to thrive.
Baiba Ziemele, Chairwoman of the Latvia Hemophilia Society highlighted, however, that despite leaps in progress for many, access can be very dependent on the country you live in, Ziemele, who has Von Willebrand’s, said “My health without adequate treatment is getting worse, and it's more and more difficult every day to dress up, smile, and keep up with tasks”, thus highlighting that there is still much work to be done, even in developed regions like Europe.
Impact of Contaminated Blood Scandal: Building Resilience Through Advocacy
The speakers reflected on the profound impact of the contaminated blood scandal on the hemophilia community, acknowledging the lasting repercussions and the resilience of those affected. The scandal, which spanned decades, involved the distribution of tainted blood products to individuals with bleeding disorders, causing immense suffering, loss of lives, and irreparable damage. Smith emphasized, "This tragic chapter marked a pivotal moment in the history of hemophilia care, highlighting the need for advocacy and community focus beyond hemophilia to ensure comprehensive and safe treatment access for all."
The aftermath of the scandal catalysed significant shifts in advocacy, with the community mobilizing globally to ensure proper diagnosis and safe treatment access. Advocates expanded their efforts to encompass a broader spectrum of bleeding disorders, highlighting the importance of accountability, justice, and support for those affected. The event highlighted the critical need for stringent safety measures, ethical standards, and equitable access to safe treatments for individuals with bleeding disorders worldwide.
The speakers recognised the importance of acknowledging this dark period in history while also recognizing the strength and resilience of the hemophilia community. By doing so, they underscored their ongoing commitment to ensuring that no individual with a bleeding disorder faces such a tragedy again. The contaminated blood scandal serves as a poignant reminder of the critical need for vigilance, compassion, and support for those affected by such tragedies. By working together, the community can create a brighter future for all individuals with bleeding disorders, regardless of their background or circumstances.
As Smith concluded: “It would be impossible to look at the achievements of this community over the last 50 years without talking about the contaminated blood scandal. The fact that we are still here and many people are able to live with their conditions and live well with their conditions […] is in itself a triumph”.
Shifting Advocacy: Change for the Next Generation
The event explores the critical topic of advocacy for the next generation within the hemophilia community, with a focus on evolving strategies to engage and inspire the youth effectively. Panellists emphasized the need to adapt traditional approaches to reach the younger demographic, acknowledging that they may be interested in new topics or communication channels compared to previous generations.
Smith highlighted the importance of understanding the differing priorities of the next generation, such as sexuality, mental health, and lifestyle, and stressed the need to be proactive in identifying and engaging prospective leaders. He encouraged the use of multi-channel approaches, including media, social media, and peer-to-peer advocacy to reach the younger generation where they are.
Trudy Nyakambangwe, Founder at Child and Youth Care Zimbabwe, emphasized the power of storytelling and personal connections in advocacy efforts, advising to "use you or your community stories to drive change." Carcamo Bonilla highlighted the need for peer-to-peer advocacy tailored to the motivations and interests of the younger generation, as well as a need for proactive engagement in advocacy, using multi-channel approaches like media and social media to reach out to prospective leaders.
The speakers emphasized the importance of revamping advocacy strategies to effectively engage the next generation, including embracing unconventional topics, leveraging various communication channels, and adapting approaches to cater to the evolving priorities and motivations of the younger demographic within the hemophilia community. The event encourages a proactive and innovative approach to advocacy, recognizing the need to evolve with the changing times and the diverse needs of the next generation.
Revolutionary Leadership and the Future of Advocacy for the Hemophilia Community
With a focus on creating a unified voice in advocacy and an emphasis on global health equity, revolutionary leadership will continue to drive forward the future of hemophilia advocacy. Bombardier and Garrido stressed the importance of considering the needs of the broader bleeding disorders community, beyond just hemophilia.
As treatment continues to advance, Bombardier expressed hope that individuals born with bleeding disorders today and in the future could lead relatively normal lives without limitations. Garrido highlighted the urgency to ensure accessibility, particularly in developing countries. Collaboration with patient organizations is also essential, and Ziemele emphasized, "Find the patient organization that already works with this area that you are related to and work with them."
Carcamo Bonilla further emphasized the importance of education and empowerment in advocacy efforts, stating that education is about empowerment, not just information dissemination. This collaboration and proactive approach sets the stage for transformative change within the hemophilia community.
Bombardier stressed the importance of a unified voice in advocacy, highlighting the need for stakeholders to unite, innovate, and tirelessly strive towards a future where every individual affected by bleeding disorders can access the best possible care and treatments, regardless of barriers. This unified, proactive, and collaborative approach serves as a call to action, urging stakeholders to work together towards a brighter future for the hemophilia community.
Smith ended with. “I hope in another 50 years it would be unnecessary for our community to look back anymore and we will be simply looking forward, to living a life unencumbered by our bleeding disorders.”
Once the event finished, we asked participants: which of the following actions can you commit to prioritising within your organisation or among your bleeding disorder network to inspire, catalyse and sustain long-term impact for care?
Experts that contributed:
- Baiba Ziemele, Chairwoman of the Board, Latvia Hemophilia Society
- Cesar Garrido, President, The World Federation of Hemophilia
- Clive Smith, Global Leader in Hemophilia & Chairman of the Board, The Haemophilia Society
- Chris Bombardier, Executive Director, Save One Life
- Tirsa Carcamo Bonilla, Project Lead, Honduran Hemophilia Society
- Trudy Nyakambangwe, Founder, Child and Youth Care Zimbabwe
- Alaa Hamed, Global Head of Medical Affairs Rare Diseases and Rare Blood Disorders, Sanofi
MAT-GLB-2305902 V1.0 12/2023