Not about us, without us
Lara Bloom has quite the story. A photographer, turned politics and international relations student, turned growth catalyst for EDS UK, and now International Executive Director of the Ehlers-Danlos Society and Patient Expert for the Medicines and Regulatory Agency in the UK and Expert at PARADIGM, a public-private partnership co-led by the European Patients’ Forum and EFPIA to advance meaningful patient engagement in the life cycle of medicines for better health outcomes. She is a patient advocate on a mission to raise the status of the patient as a key expert in the process of curing, managing and diagnosing rare diseases.
“I grew up with lots of joint pains, dislocations – I fractured my wrist 27 times. I’ve had ankle sprains, chest pains, problems with my stomach. It was just relentless, and no one could just ever put the pieces of the puzzle together. I was accused of being hypochondriac and attention seeking, my parents were accused of potentially doing terrible things; it was really damaging for everyone involved. When I was finally diagnosed by a geneticist, I was 24 years old. So that was a good long period of time when I had no answers, no one to turn to. And it can really impact you.”
Ehlers-Danlos syndromes are a collection of genetic connective tissue disorders. They are so-called ‘invisible diseases’, and with only 1 in 5,000 people globally affected and no known cure, many people are misdiagnosed with hypochondriasis, depression, or chronic fatigue syndrome – and many die by suicide.
Photographer to Global Advocate
When Lara was diagnosed, she was working as a photographer, but was struggling with standing up for long periods of time, due to her Postural Tachycardia Syndrome – a common issue that can go along with EDS. She decided to take herself back to university at age 30 to study politics and international relations in the evenings 4 days a week, and was looking for part-time opportunities.
“Parallel to this, as I was getting more and more symptomatic, I had never actually met anyone else who had EDS. So I took myself along to the conference that was being run in America. It was the first time I met people with this condition, and I found it really beneficial hearing speakers and learning more and more. Knowledge is power after all. And when I came back to London and I talked to my professor, I said, why is nothing like that in the UK.” It turns out there was a support group being run out of a church hall, and Lara was quick to get in touch and offer her services to run an event in the UK.
That week, she also, by complete chance, met a kind donor at a photography event – whose daughter had died from Vascular EDS at age 19 – who offered to pay for her to work at the small support group part-time to really grow it into something she herself would have wanted as a patient. “I ended up running EDS UK, which was formerly the Ehlers-Danlos Support group. So I rebranded, changed their name. And the first year, it was just me working from my bedroom. And when I left in 2015, they were 7 members of staff. And it was one of the biggest EDS charities in the world.”
Not content with revolutionising the EDS support community in the UK, Lara went on to set up the global organisation that is the Ehlers-Danlos Society in 2016 with the mission of facilitating collaborative research and education initiatives, advocacy and community building.
Bench to Bedside, Always
Lara is a strong advocate for patients being at the heart of the process. “An example of project where we involved the patients from day one was one I was heavily involved in the steering committee – not just as the Executive Director of the organization, but as a patient expert. The influence I, and the various patient experts within the groups, had certainly meant that we got to a much more patient-friendly, patient-focused outcome. For example, we made the diagnostic criteria for hypermobile EDS stricter, meaning that potentially less people would be diagnosed. But we knew that those people were still symptomatic and needing validation, management and care, and it’s very important for the patient that there was something there to almost replace them losing or not getting that diagnosis.
And so ‘Hypermobility Spectrum Disorders’ was created, and I really believe that it was influenced by the patients to make sure there was something there, something that people would be diagnosed with and managed with. The fact there was a 20 year gap in the criteria updates tells you that although the want was there from the clinicians to do this, there wasn’t a facilitation. And it was made possible because patients and a global organisation were involved.”
Some may wonder why it’s so critical to get the patients involved so closely with development of therapeutics. Lara has a simple answer: “There’s a lot of good in the medical and pharmaceutical industry. But let’s not deny the fact that it’s driven by money, by targets, and publication wants. I think sometimes that can leave out the narrative: the motive, the drives, why is this being done. The end product of where anything is going is to a patient, so bench to bedside always. And if you don’t have the narrative of the patient from the very start, then how do you know that you’re delivering the right thing?”
Lead, and the Others Will Follow
Lara believes that leading by example at the Ehlers-Danlos Society is an effective way of convincing others to hold the patients in higher regard. “When we launched this global charity, we created an international consortium for EDS. And on every single working group, I insisted there was a patient expert. So from the very beginning and concept of conversation, and developing what they were doing, through to publication, and those patients having their names published on these papers, the patient was involved. I think you have to lead by example: if it becomes the norm, then that is what people will do.” Lara wants the patients to be better respected in terms of inclusion and respect. “From the very beginning, there needs to be a patient at the table that is seen and respected as an equal stakeholder through to the end product – whether that is a paper being published, research being done, or a new medicine being trialled.”
Things are improving though. The European Patients Academy on Therapeutic Innovation trains cohorts of patients so they can be part of the high-level discussions, and Lara was put through this programme herself. “I was very lucky to be on the first cohort of students being funded to take advantage of this opportunity to be trained on developing the tools and the knowledge to be able to sit at the table as an equal stakeholder, and to make a difference in discussing development process. They built an army of patient experts, but there really wasn’t the follow-through on what to do with them. So now, the IMI have launched Paradigm, which is looking at how we take those people that have been educated and make sure they transition into engagement.” It seems the industry is indeed starting to wake up to the idea that the patients are a critical stakeholder beyond being the ‘end-user’.
The Future of Patient Engagement is Community
Lara is also excited about the future of the Ehlers-Danlos Society, with the launch of the first ever EDS global registry and the recent donation of $1million to conduct research into the genetic makeup of the hypermobile form of EDS (the only one without a known canalization), things are moving in the right direction.
But for Lara, it all comes back to the community of patients. With a group of almost 70,000 people online, a forum which is active daily, and now many more patient gatherings, the EDS world has come a long way. “I think historically, and even when I started at EDS UK, the EDS world was fragmented. It seemed patients were almost against each other. Everyone was so bitter with the pain, and tired and frustrated. Patient organizations were working against each other, doctors were not working together. So for me, coming in, being newly diagnosed in this climate, I would be inspired by how everyone is working together. Everyone seems to have one voice much more than in the past. And I would just be in awe of how the medical profession is working at an incredible rate, and how well they’re working together, giving up their time for free, doing conference calls through the night because of the different time zones. It’s really an amazing effort of people’s expertise and dedication.”
Of course, there’s always work to be done, and Lara is very aware that by being in the job she is, she has a lot of privilege as a patient. “I’m very, very lucky to have access to other world leaders in this space. I’m well aware every day that majority of people living with this do not have that privilege. It’s the very few that have services and care, and the average time to diagnose with EDS is still about 12 years. So there’s still a lot to do, but we’re getting there.”