Spotlight on the patient voice: Laurence Woollard on advocating for people living with hemophilia
Attending this year’s ISTH 2023 Congress in-person is Laurence Woollard, a 33-year-old from Cambridge, U.K., who lives with severe hemophilia A. Laurence serves as Director of On The Pulse Consultancy and is a passionate advocate for upholding the rights, interests and autonomy of individuals like himself in making evidence-informed treatment choices.
Alongside his day-to-day professional commitments, Laurence is undertaking a two-year, part-time Master’s degree in Health Policy at Imperial College London, a leading science-based institution.
Laurence sat down with the ISTH team to share more about his lived experience with hemophilia and what inspired him to become an advocate for other people affected by rare and long-term conditions.
ISTH: Can you share a bit about your hemophilia story? When were you diagnosed?
Laurence Woollard (LW): I have a family history of hemophilia. My granddad, David, tragically died of AIDS-related complications in 1987 having contracted HIV from contaminated blood products. My mother knew she was a carrier in her early 20s. I am the youngest of three boys, each diagnosed at birth with moderate FVIII deficiency, but we each have a severe bleeding phenotype. In my lifetime, I’ve switched from heat-treated plasma-derived FVIII to three different generations of safer, more efficacious recombinant treatment, to today where I’m on a flexible individualized regimen using a longer-acting product.
Growing up in the ‘90s, I was treated on-demand - meaning when a bleed occurred - rather than taking a preventative approach using prophylaxis. I had many joint bleeds as a child, particularly in my right ankle, which I had surgically fused at age 16 due to chronic hemophilic arthropathy. Like others of my generation and before us, I am reminded daily of the legacy of suboptimal care by chronic joint pain and restricted mobility. Yet, owing to universal access to healthcare and advances in treatment, I still manage to maintain an independent and relatively active lifestyle.
ISTH: What does your day-to-day life look like as a person living with hemophilia?
LW: Despite therapeutic progress for hemophilia, the unpredictability of breakthrough bleeding that was more present in my childhood and teenage years has now been replaced by the everyday reality of chronic joint pain and the uncertainty this engenders when planning activities. It can be really disruptive and there are no easy answers, even with pharmacological strategies.
It’s also the psychological effects and mental toll that comes with chronic pain. In truth, I mask many of my symptoms, partly from an inherent British stoicism but mainly to protect friends and loved ones and avoid not wanting to sound like a broken record, although the mask does slip off now and again.
On a day-to-day basis, I try to focus on the things I can control. Physical activity is highly recommended for people living with hemophilia to improve joint stability and function and ultimately, reduce the risk of bleeding. I am a regular gym-goer and have a personalized program that accommodates some of my joint limitations. I am also a keen road cyclist as well as a beginner at yoga and Pilates, which are both important for improving balance and building core strength.
The fact that I have access to safe and efficacious treatment and comprehensive care affords me this opportunity to take-up different fitness activities. In the past, high-contact and collision sports, such as soccer and rugby, together with high-velocity activities, including skiing, were strongly discouraged, if not prohibited, due to the high risk of bleeding episodes and life-threatening injuries. But the increased bleed protection from prophylaxis with high-dose/high-frequency factor replacement therapy or current and emerging novel therapies is opening up new possibilities for greater patient choice around sports participation.
ISTH: What inspired you to advocate for people living with hemophilia?
LW: It was an iterative process, which, for me, had its roots in volunteering. When attending and participating in community-based education and training events, one is exposed to new knowledge and alerted to topical issues, which, in turn, increases one’s curiosity to learn more about them and take individual and collective action.
As someone once said, “Before you tell your life what you intend to do with it, listen for what it intends to do with you.” It sounds super cliché, but I uncovered a strong desire and sense of purpose to make a difference to people impacted by rare and long-term conditions, so much so that I made a career-switch from the music industry into patient advocacy full-time.
Today, I consult independently through my company, On The Pulse, and serve on numerous committees and working groups to raise awareness of hemophilia and common rare disease interests, inform national service standards as well as promote the active involvement of patients in treatment decision-making and the end-to-end product pathway. I am also studying a two-year, part-time Masters in Health Policy at Imperial College London to strengthen and expand my own research competencies and ability to affect change.
ISTH: What are some of the greatest challenges that you see patients with hemophilia facing today?
LW: It obviously depends on the geographical context in which people living with hemophilia are situated. If I speak to what I know--a publicly-funded health system in a developed country like the U.K.--there is a disparity in timely and ongoing access to every member of a specialist multidisciplinary team delivering high-quality care across comprehensive care centres, particularly physiotherapy and psychosocial provision.
Furthermore, for those with pre-existing joint disease, pain prevalence is significant and more research---co-produced with people living with hemophilia--is needed to improve pain assessment and management strategies. With the increasing number of treatment options for hemophilia, low health literacy is still a barrier to receiving and demanding optimal care.
The mantra of a “bleed free” life is seemingly unattainable for some or not even in their consciousness, despite what can be achieved where current therapies are available. Another way this has been interpreted recently by Prof. Cedric Hermans and colleagues is living with a “hemophilia-free mind.”
That said, wellness and self-management go hand-in-hand, therefore patient education remains of paramount importance to help close the health equity gap. Additionally, the preference for treatment convenience and reduced treatment burden over optimal bleed protection remains stubbornly central to patient decision-making, so new therapeutics that minimize this trade-off will be key to enhancing joint health and quality of life.
ISTH: How can organizations like the ISTH better support people living with hemophilia?
LW: I would encourage the ISTH to continue its capacity-building initiatives and partnership programs across resource-rich and resource-poor clinical settings, as people living with hemophilia will be the eventual beneficiaries from the improvements in care.
Whilst not being part of the traditional ISTH community, I for one have valued the open-access virtual webinars and past congress highlights with key opinion leaders to keep updated and informed of the latest research and trending topics, especially the series on gene therapy. I am sure this sentiment will be shared by other peers and colleagues within the hemophilia advocacy network.
It is critically important for an organization like the ISTH to build a culture that encourages patient-research collaboration and ensures that, whenever the patient is being discussed, their voice and perspectives are in the same room. The ISTH should work to reduce obstacles to informed patient attendance and representation at congresses and take the opportunity to promote and endorse patient-led research collaboratives that forward the whole bleeding disorders agenda, not just hemophilia.