Advocacy is Proactivity

At the recent 2023 HAEi Regional Conference EMEA, we got to sit down with HAEi Leadership (from left),
Henrik Balle Boysen, Tony Castaldo, Fiona Wardman, and Jørn Schultz-Boysen. We spoke to them about
their passion for advocacy and their hopes and fears for the future.

HAEi Leadership Roundtable Interview: Advocacy is Proactivity

Let’s start by discussing what keeps you all working so hard. What excites you and fires you up to do more?

Tony: My passion is seeing a country or a person finally get access to treatment. The sense of community that we feel is another big driver. We see physician-scientists, patients, and caregivers come together and learn from each other. The fellowship we all feel is something magical. People getting together with a shared interest. When we hear: ‘Gosh, you know, I’ve never met anybody else with this rare condition before,’ or ‘Wow, I’ve learned things that I didn’t know about before.’ That really excites me.

Fiona: I share that. Bringing people together, whether they are old friends or meeting for the first time, is an opportunity to share knowledge and learn more.

Henrik: Yes, seeing so many people with a ‘can-do’ attitude. When you get HAE patients together, they know that everybody there will understand where they come from and their situation. They don’t have to explain everything from the beginning. So, there’s a certain pre-understanding of everybody, which makes the meeting take off immediately.

The sight of HAEi continuing to grow inspires me, too. The strength that we see in each of our Member Organizations is really exciting. As an individual or a group begins to organize and grow, we see the difference our tools and support offer.

As an individual or a group begins to organize and grow, we see the difference our tools and support offer.

Tony: It takes just one active person for HAE to get a seat at the table and for the situation to improve. The 2023 HAEi Regional Conference EMEA took the slogan ‘Take Action.’ And that remains the case wherever you are in the world. We want to motivate people to go back and be more active. There is strength in numbers. When our community comes together, things improve.

Henrik: Every patient who Takes Action is a hero, advocating for their case to get access to and reimbursement for life-saving and life-giving HAE medication.

Fiona: Even the smallest Member Organization can act like a bigger one with the right tools. Whether it’s one person, like Henrik said, or a group of people. No matter how they’re organized, they can be organized, whether they have an hour or 10 hours a week.

Jørn: Being on the cusp of 100 Member Organizations is hugely exciting. I’m most inspired by the dedication of the many passionate individuals in the HAE community who work tirelessly every day to improve the lives of those living with HAE, striving to transform their situation for the better.

What is your biggest hope for the future?

Tony: My ultimate vision is that by doing our part collectively, we bring access to one or many forms of modern therapies everywhere in the world. Everything is focused on that. So, when I talk about our HAE patient-driven research, it is about giving HAE a seat at the table when decisions are made. Decisions about medicines are driven by data.

Henrik: Hope comes from seeing our young people come together. It’s incredible to see all those youngsters wanting to be part of the future of their organization and HAEi.

Fiona: Every person who understands HAE, every correct diagnosis, every program of awareness, and ultimately, every new person accessing medication is a cause for hope. We know there is much to do. There are still countries where access is limited or non-existent, but every positive step shows change is possible.

Every person who understands HAE, every correct diagnosis, every program of awareness, and ultimately, every new person accessing medication is a cause for hope.

Jørn: I want every person with HAE to have access to and receive reimbursement for modern HAE treatments and have the freedom to choose the option that best suits their needs. Before that happens, it is crucial to identify individuals with HAE, secure their diagnosis and treatment, and thereby provide the highest possible quality of life for every person with HAE and their families.

Tony: The continued advancement of HAE science and new companies coming in with more advanced therapies, are huge sources of hope and excitement. Together with patients, caregivers, physicians, and pharmaceutical companies, we can move the needle to bring treatments to individual countries.

You mentioned moving the needle. Can you give any examples of impact?

Tony: Dr. Philip Li in Hong Kong credits HAEi as a reason why there is now a Member Organization. Ultimately, patients in Hong Kong are starting to get access to medicines. Dr. Li is working on an exciting study to try and quantify how our work has made a tangible impact in that specific region.

Fiona: Hong Kong is a great example, and so is India. When we first started in India, there was nothing. We only had access to androgens, not even fresh frozen plasma, in the hospital. Now, we’ve got access to C1-INH products, with on-demand treatment potentially on the horizon. Adjusting for the years lost to COVID, they’ve moved so far in three or four years maximum.

Jørn: 2023 has been a year of remarkable impact. HAEi has collaborated across our community to reach more people than ever. Our meetings are over-subscribed. hae day :-) wraps the globe in solidarity and understanding, touching every corner of the HAE community. This day embodies the vast reach and unified spirit of our cause. As Henrik mentioned, our young people are such a beacon of a bright future, especially the LEAP class of 2023. Numerous young participants have completed the educational program and contributed significantly by undertaking and delivering projects for their member countries. This level of engagement and accomplishment is nothing short of extraordinary. Ultimately, success is achieved through our collective impact across the HAE community. Our joint efforts form a vibrant mix of hope, advocacy, and progress for the HAE community worldwide.

Ultimately, success is achieved through our collective impact across the HAE community. Our joint efforts form a vibrant mix of hope, advocacy, and progress for the HAE community worldwide.

What concerns you or stands in the way of this hope for the future?

Tony: Economic realities exist when discussing access to and reimbursement for modern HAE medicines. Ours is a tiny population. We are working with our physician-scientists and pharmaceutical companies to make these clearly, life-saving, and life-giving medicines available.

Henrik: Bringing access to medicines and, most importantly, reimbursement is a fight we’ve not yet won. Things are improving, and the future for HAE is bright. We currently have eight approved medications, with nine more therapies being evaluated in ongoing clinical trials. It’s unheard of within a rare disease to have that many choices. But there’s so much more to do. Our work must be focused on creating a situation where the health minister of a country wakes up every morning, and the first thing they think about is HAE.

Jørn: The struggle of those who remain undiagnosed is particularly troubling for me, as we are acutely aware of the severe impact the disease can have when it goes unrecognized and untreated.

Fiona: Treatment availability is also closely linked with diagnosis. We often see that there are patients diagnosed following treatment access. And so, to make sure that we find and diagnose as many patients as possible, which is a core aim for HAEi, we must keep pushing for reimbursed treatment.

Jørn: Our work must be sustained for the long haul. There is no quick fix to getting people with HAE the care and support they need.

Tony: I like to tell a story of perseverance. There’s a little country called the United States. Back in the day, we didn’t have access to any medicines. We had heard that the Europeans had access to products like C1 inhibitors. And so, in 1999, we started an advocacy organization. Our first HAE product wasn’t delivered until late 2008. It took nine years of intensive advocacy to reach where we need to be. We did it because we found other organizations that already had access to medicine. We found physicians who understood how all this worked. Then, we also found pharmaceutical companies and worked with them to see if we could convince them to come to our country to provide these medicines.

What would you say to people with HAE who aren’t currently active?

Tony: Get involved. Get involved with your Member Organization. Get your family involved. Make sure that you’re in contact with your Member Organization. Make sure you also get Global Perspectives magazine because that will tell you about everything happening in the world of HAE.

Henrik: Grab the information, grab the excitement, grab the motivation to do something. Please don’t just sit back and wait for others.

Tony: Every individual, we call it the power of one. You gotta get out there!