Across the globe, the HAEi family of Member Organizations (MO) has grown to 99. With such a large number of groups doing incredible work to support people living with HAE, it can take a lot of work to keep up. To help, we will hear directly from MO leaders on what’s happening and how they are embracing change and helping their members live their best lives with HAE.
For this issue, we spoke with José Ignacio Contreras Silva in Chile and Marijk Beekman-Kortekaas in the Netherlands. Both have recently worked with other volunteers to rejuvenate and relaunch their MO following a period of inactivity. They tell us about how patients felt unsupported and how, by stepping up, patients could access vital information and see a strong local group advocating for them.
First, we asked the two leaders to explain more about the situation in their countries.
José: In Chile, patients were without support from an entity that cared about hereditary angioedema (HAE). They had no information or support for themselves and their families. They did not know about new therapies or how to improve their quality of life.
Marijk: In the Netherlands, the group is an organization for all types of angioedema. However, HAE needs a totally different form of advocacy from non-hereditary forms. There didn’t seem to be any sense of urgency to advocate for people with HAE, and everyone was unhappy. The pandemic hit the group, and there was nothing organized and virtually no news. In 2020, they started to look for a new president. And at the time, I thought, well, no, it’s not for me. I was trying to finish an education and was having three attacks a week. The news came that they would need to terminate the organization if they couldn’t find anyone.
How did the situation impact people living with HAE in Chile and the Netherlands?
Marijk: We needed someone to advocate for people with HAE. There were new medicines that needed reimbursement. I enrolled in clinical trials through an ACARE center, so I had a lot of information. But, I discovered that other patients didn’t have the latest information. People were asking questions on Facebook. The information there was outdated. Many still thought we could only treat throat swells or abdominal swells. If you’re treated in a local hospital with little knowledge about HAE, you don’t get the best or latest information.
José: The people were very sad and angry. They had lost hope that anyone could help them to improve the situation in Chile and continue to fight for them.
Marijk: The most significant thing was no peer support. For me, peer support is one of the most important aspects of living with HAE. If you have a large family with all kinds of people who live with HAE, you can talk to each other. But I’m the only one in my family. And at the time, most people in the Netherlands were just suffering alone.
For me, peer support is one of the most important aspects of living with HAE.
Can you explain to me what changed?
José: We created a new organization and were immediately able to assist all those who needed information on the latest treatments available in Chile. Specifically, we could explain the protocol used in our country to administer Berinert. The Chilean organization now visits health centers where we show them what HAE is all about.
Marijk: I needed to step up. I told myself, ’I need to become president of this organization.’ So I stepped up and told them, ’ Well, okay, if no one else wants to do it, I’ll do it.’ I had absolutely zero knowledge about the organization.
José: We began to hold meetings with the Ministry of Health to inform them of the progress in HAE management. We are working on an assistance program where patients’ emergencies are attended to by telephone 24 hours a day.
Marijk: We had to step up the pace of medication access, ensuring modern medicines get and stay reimbursed. We needed to professionalize because only professional organizations are invited to sit at the table and contribute.
We worked on the website, so now there’s correct information in the right language so that it’s understandable for everyone. HAE is a complex disease, and most information is difficult for large groups of people to understand.
José: We are working on a free psychological help program for all pediatric patients, adults, and caregivers. It will start in March of next year.
Marijk: We had a patient meeting last October. One of the doctors told the audience that some people with HAE experience anxiety or irritability as a prodromal symptom. The doctor described a situation where a patient was irritated and screaming in the car with her daughter. The daughter tells her mom, ’Mom, I think it’s time to get your on-demand treatment because you’re suffering from an attack.’ I had to laugh as it sounded like me! That’s a great case study example of the power of peer support.
How did HAEi support these changes?
Marijk: Michal [Rutkowski] introduced me to many people. We built a network of people and organizations to create more awareness in the Netherlands. I traveled to Frankfurt for the 2022 HAEi Global Leadership Workshop. When I arrived, I was like, ‘All these people know each other. They’re all friends, and I’m the new kid.’ Michal saw me struggling and said, ’I will introduce you to lots of people.’ And he did. He introduced me to Fiona Wardman of HAE Australasia. Fiona connected me with Evelien de Bruin from HAE Australasia, who was also in Frankfurt. It turned out Evelien has a sister in the Netherlands, and her sister was one of the first board members of my organization. Their mother actually founded HAE Netherlands. Within a week of getting home from Frankfurt, I got an email from Evelien. We had an amazing brainstorm session. All because Michal introduced me to Fiona.
José: Fernanda was the best help we could receive to start working as a corporation. She was always there when we needed information, always concerned about the situation in Chile and how the patients were. Together with others, she and HAEi have provided us with tools and support. We are delighted to be part of the HAEi family.
We are delighted to be part of the HAEi family
Marijk: There was so much support available. Our Regional Patient Advocate, Maria Ferron, traveled to Utrecht for our patient meeting. We had no translation service whatsoever. But she stayed the whole day. She was there for me, and that is what HAEi does. They always tell us we’re one big global family. I thought, ’Is it really true? But you feel it. You just feel part of this big global family.’
And how have people living with HAE benefitted?
José: Now, patients are very happy and excited. They feel calm knowing that Corporación Angioedema Hereditario Chile is fighting for them and that HAEi backs us. Our members show their support every day by actively participating in meetings. They deeply believe in our organization’s mission: ‘to help and protect all patients with Hereditary Angioedema in Chile.’
Marijk: People were relying on doctors to provide them with information. Now we have information, and people are just stepping up for themselves. People who aren’t even members tell me the information we share is working. At the pandemic’s start, the ACARE center in Amsterdam had 100 patients. The last I heard, they have 150 patients. People see a strong organization that wants to advocate for everyone.
I speak to people worldwide, from Pakistan to South Africa, and we discuss what we can do. I learn from them; they learn from me; it’s powerful and what we need. Step up and advocate for yourself. You can only do so much, but everything you do counts.
