Improving Pain Management and Mental Health in the Hemophilia Community: Let's Take Action
Advocates at the Hemophilia Changemakers Event emphasize holistic well-being for individuals with bleeding disorders, calling for improved pain management and mental health support
At the second Hemophilia Changemakers Event of this year, in partnership with Sanofi, advocates for people living with bleeding disorders gathered to discuss the profound impact that mental health issues and pain have on their daily lives. These advocates, all of whom had personally experience the challenges of living with a bleeding disorder, highlighted that to truly improve the quality of life of those living with hemophilia and raise standards of care, holistic well-being must be prioritized.
Patrick James Lynch, Founder and CEO of Believe Limited, kicked off the discussion by sharing his personal experiences with hemophilia. He emphasized that while there have been advances in understanding and treatment, there is still much work to be done in addressing the mental health challenges and pain needs of individuals with hemophilia. For Lynch and many others living with hemophilia, pain can be a reminder of limitations, exacerbating mental health issues - such as depression and stress - and creating a negative feedback loop for well-being.
To bridge the gap in care, Lynch recommends enhancing five key areas:
- Research: A pressing need exists for more research into the pain and mental health experiences of people living with hemophilia. This research should encompass both physical pain and psychological aspects such as anxiety, stress, depression, grief, and trauma. By conducting this research, we can develop better strategies for managing pain and mental health.
- Data Collection: Reliable data is essential to support claims and plans for improving pain and mental health care for people with hemophilia worldwide. Many decisions made by healthcare professionals, advocates, and policymakers depend on data. This data can help them make informed decisions to enhance patient care.
- Standardization: Consistent use of the same tools and methods is crucial to identify and treat pain and mental health issues as part of comprehensive care for hemophilia. This approach ensures that patients receive the same high-quality care, regardless of where they are in the world.
- Normalization: Open and honest conversations about pain and mental health should be encouraged to dispel the stigma often associated with these issues. By normalizing these conversations, healthcare providers, caregivers, and community members can identify and support individuals dealing with pain and mental health challenges earlier.
- Agency: People with hemophilia should have autonomy in managing their pain and mental well-being. When individuals have a say in their care, they are more likely to experience better outcomes and improved quality of life.
The panel discussion that followed agreed that focusing on these five areas is crucial for improving the quality of life for individuals with hemophilia. As Tirsa Carcamo Bonilla, Project Lead at the Honduran Hemophilia Society, notes, "quality of life remains the most important concern for people living with bleeding disorders." By taking this approach, healthcare providers can ensure that the most critical concerns for individuals with hemophilia – both physical and mental – are addressed, ultimately leading to better outcomes and a higher quality of life.
Comprehensive Data Is Needed to Improve Care
One of the most discussed topics among the panel was the importance of data. Data collection plays a crucial role in informing decision-making and providing valuable insights into patient experiences. By analysing patient data, healthcare providers can identify patterns and trends that guide the creation of treatment plans, addressing both the physical and emotional needs of patients. This approach leads to more effective and holistic care, ultimately improving patient outcomes and quality of life.
Mark Skinner, President & CEO at the Institute for Policy Advancement Ltd, emphasized the importance of a comprehensive framework for assessing overall well-being, stressing the need for patient-reported outcomes and diagnostic tools to gain a deeper understanding of mental health conditions and pain. He also highlighted the value of collecting data over time to evaluate the long-term effects of treatment and monitor progress.
Olivia Romero-Lux, Acting President and Co-opted Steering Committee Member at the European Haemophilia Consortium, added "Before even exploring referrals and resources, there is a need and lack of [comprehensive] data", underscoring the importance of prioritizing data collection to inform treatment strategies and ensure that interventions are based on accurate and well-informed data rather than incomplete information.
The power of systematically collecting data to understand the unique experiences of individuals with hemophilia cannot be overstated. By prioritizing comprehensive data collection and analysis, healthcare providers can provide the highest standard of care and drive meaningful progress in the realm of pain management and mental health support, leading to a brighter future for all individuals facing bleeding disorders.
Recognizing Women and Children with Hemophilia
For far too long, individuals with bleeding disorders, particularly women, have been overlooked and under-supported, leaving them feeling isolated and without the necessary resources. Baiba Ziemele, Chairwoman of the Board at Latvia Hemophilia Society, has brought attention to the unique challenges that women face when living with these conditions and has advocated for the importance of understanding their experiences. By acknowledging and addressing these challenges, healthcare providers can work towards providing the support and resources that women need and deserve, empowering them to take an active role in their care.
Children with bleeding disorders also have the right to be heard and understood. Unfortunately, they often struggle to communicate their pain and experiences, and may face additional challenges when people do not listen to them or dismiss their experiences. It is crucial to recognize the unique difficulties that younger people living with bleeding disorders encounter, and ensure that they feel safe, supported, and empowered. This involves providing them with proper medical care, educational resources, and opportunities to build relationships that help them manage their condition and succeed in life.
It's important to recognize that individuals with bleeding disorders are not the only ones facing challenges. Their families and caregivers, as well as other loved ones, often contend with complex emotions, financial strains, and moments of isolation. To provide effective and comprehensive care for people with bleeding disorders, the needs of their families and caregivers must be considered. A holistic treatment approach addresses the whole person, including their support system.
Preventing Pain and Offering Complete Care
Holistic care for people living with hemophilia involves a proactive approach to prevention and empowering patients to take control of their own pain management and mental well-being. Skinner emphasized the importance of a patient's agency in managing their pain and mental health, as this directly influences their outcomes and overall quality of life. This approach is a crucial component of comprehensive care, ensuring that individuals with bleeding disorders receive the support and resources they need to lead fulfilling lives.
As Skinner noted, “Living with hemophilia can be a daily struggle, with the constant fear of the next bleed and the physical pain that accompanies it. This can have a profound impact on one's mental health and well-being," demonstrating that it is essential to prioritize both prevention and treatment to effectively support individuals with bleeding disorders.
Call to Action: Higher Standards for Pain Management and Mental Health
The panel closed with a call to action, highlighting the need for a complete, long-lasting, and fitting plan for managing pain and mental health in people living with hemophilia.
- Community-Led Initiatives: Carcamo Bonilla emphasized the crucial role that patient communities play in making progress on this issue. She stressed the importance of staying vigilant, being proactive, and carefully planning to make sure that the needs of people with hemophilia are always the top priority.
- Empowering HCPs: Ziemele highlighted the critical role that HCPs play in addressing the challenges of pain and mental health. She advocated for better training and equipping healthcare providers with the necessary tools to provide effective care, prioritizing patient needs and preferences.
- Optimizing Treatment Centers: Skinner suggested ways to improve treatment centers. He emphasized the need for clearer roles and responsibilities, especially when it comes to pain and mental health, and recommended additional training for healthcare workers to enhance their skills and foster a culture of collaboration and excellence.
- Investing in Research & Data: Romero-Lux emphasized the need for more research and better tools. She stressed the importance of gathering more data, developing improved tools, and enhancing the education of healthcare providers in this area. She also highlighted the power of global partnerships in advancing the quality of life for individuals with hemophilia.
The panel’s call to action highlighted the unwavering dedication of individuals, advocates, healthcare professionals, and organizations within the hemophilia community to address the challenges of pain management and mental health. The event outlined a way forward, emphasizing the importance of unity, data-driven approaches, and knowledge acquisition to enhance the quality of life for people with hemophilia and pave the way for a brighter, more hopeful future.
Once the webinar finished, we wanted to see which calls-to-action shared during the event resonated the most with our attendees, so we asked them which actions they could commit to implementing in their own regions:
Here is some data to showcase the attendees of this event:
Experts that contributed:
- Patrick James Lynch, Filmmaker, Founder and CEO, Believe Limited
- Olivia Romero-Lux, Acting President and Co-opted Steering Committee Member, European Haemophilia Consortium
- Mark Skinner, President & CEO, Institute for Policy Advancement Ltd.
- Baiba Ziemele, Chairwoman of the Board, Latvia Hemophilia Society
- Tirsa Carcamo Bonilla, Project Lead, Honduran Hemophilia Society
- Jeff Schaffnit, General Manager, U.S. Rare Blood Disorders, Sanofi