This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024
The Patient and Caregiver Track consisted of many exciting topics – click on a topic to know much more about what went on during the sessions:
This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024
Getting to Know the Americas Region
After the keynote, Fiona Wardman, Executive Vice President Global Advocacy and Chief Diversity Officer, and Jørn Schultz-Boysen, Executive Vice President Global Operations and Chief Compliance Officer, introduced the next sessions that were dedicated to understanding more about the Region.
The region focus kicked off with a special welcome from our Panama hosts before each Member Organization from the region introduced themselves.
Fernanda de Oliveira Martins, South America and Mexico
“I represent 11 countries in the Americas, where 440 million people live. It is estimated that 14,700 people with HAE live in these countries. We have the opportunity and perhaps the responsibility to help, but this is not an easy task. People with HAE in South America and Mexico face many difficulties, including delays in diagnosis and difficulties in accessing treatment.”
“I support the incredible job my region’s patient associations do to ultimately secure a better quality of life for those living with HAE in their countries.”
“There are lots of activities, meetings, and patient follow-ups. We meet with doctors, contact pharmacists, and liaise with government bodies. The results are showing. More patients are diagnosed and registered with associations. More drugs are approved and available to patients, and we move towards a better quality of life for those with HAE.”
“I’m very proud to be part of this event. May the 2024 HAEi Regional Conference Americas help us renew our purpose and inspire us to return home with a clear plan to Take Action.”
Javier Santana, Central America and Caribbean
“I represent 7 countries in my region. The combined population of my region is about 59.2 million people, and we estimate that there will be 1970 patients in the region. Right now, we are not even half that number. Challenges we face include governments sometimes not accepting the disease, and doctors not knowing about the disease, and patients not following up on medical appointments as they are frustrated there are no treatments.”
“Many years ago in Costa Rica, there were no treatments; the government did not want them, and the doctors didn’t know about the disease. But thanks to the efforts of patients and doctors who did care about HAE, they got meetings with the Government. Today, Costa Rica already has two treatments to treat HAE.”
“There is work to be done. Nothing is easy in life. Difficult things that are worked well always have a purpose and always succeed. You can count on us in HAEi to carry out the necessary work. You can count on us as RPAs. That is our job, to help you.”
Tony Castaldo, North America
“In North America, comprising the United States and Canada, there are approximately 375 million people and approximately 12,500 HAE patients. The United States and Canada both have experienced, well-organized, and very effective organizations. Both organizations have led the fight, and I mean fight, and have been successful in winning access to and reimbursement for modern HAE medications.”
“Securing access to all new medicines and keeping access is now the challenge. We’re putting on the gloves, and we’re ready to fight. We will fight fiercely for continued access for our community.”
“Each organization here in the Americas can rely on the experience and reach of HAEi to help formulate and implement an action plan so you can expedite the process of accessing HAE medicines.”
“We must then work to protect our access to medicines. Ultimately, it is about disease education and advocacy.”
Ending the first evening of the 2024 HAEi Regional Conference Americas, Member Organizations from across the region, shared video messages for patients and caregivers.
This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024
Raising HAE Awareness in the Americas
Javier and Fernanda, two of the RPAs for the Americas region, opened the second day. Together, they told the assembled patients and caregivers about the importance of raising awareness of HAE and shared some effective ways to do so.
Why is raising awareness important?
It increases enthusiasm and support, stimulates action, and generates local knowledge and resources. It can show government policymakers the will for change. It can improve the lives of people within the community.
Where do you start with raising awareness?
The first way described was social media. Although it may seem obvious, it is only powerful when used properly. Javier and Fernanda told the audience, ‘Don’t use it to impress people; use it to impact people.’ Use social media to show who you are and what you stand for. Use it to tell compelling stories, ensuring they are spread far and wide.
The next step is to talk to as many people as possible. Anyone can be an ally in the fight for better care. Share factual information from others, from HAE organizations. Be honest about your life with authentic conversations.
Take the opportunity to make connections with others, especially patients and caregivers in your country and beyond. This can lead to knowledge exchange and greater awareness opportunities. Change happens one person, one moment at a time.
Contact officials such as government officials, meet with your members of Parliament or talk to people at health ministries. Javier and Fernanda shared a key lesson; know what matters to politicians and tailor your message to match their interests. Research interviews and speeches they’ve given. Keep them up to date whenever you have developments or new materials.
Use HAEi’s free website hosting and templates to give your organization a strong online presence. These have been used effectively in the region. Javier and Fernanda shared examples from Canada, Panama and Brazil.
Use and share the HAE Emergency Cards. Use the Emergency Department Posters as an opportunity to raise awareness. These can create life-saving knowledge and awareness when people need it most.
Of course, Javier and Fernanda remarked that attending HAE meetings such as this one in Panama can be powerful in raising awareness, especially as a chance to network with others and share ideas.
Celebrate success; no matter how small, sharing progress keeps your campaign top of mind and demonstrates your impact. And don’t forget to share photos and information on social media to inspire even more people.
Use the media to help you to get your message out there. The two RPAs explained they knew it could be uncomfortable to talk in front of people or a camera, but the benefits could be huge in making the case for change. Telling your story to a newspaper or magazine can reach so many people. Doing radio interviews keeps you away from the camera, and reaches another audience group. HAEi Advocacy Academy has free tools and advice on telling your story to the media, and the RPAs are always on hand to support you. HAEi offers support with the facts and information crucial to getting media interest.
The Youngsters’ Community and HAEi LEAP program offers opportunities to reach critical younger audiences and build the advocates of tomorrow. One youngster from Brazil said, ‘This community makes us feel like we belong to a group that accepts us, loves us, and helps us just the way we are.’ Our young people are also a skilled resource; their ability with social media can be very helpful. Their unique perspective can be very appealing to media and politicians.
hae day :-), 16 May, is a huge opportunity, as an established annual global awareness day. Share your story. Organize a local event. Get involved, however you want. The HAEi provides everything you need at www.haeday.org
Javier and Fernanda concluded by reminding all the delegates of their RPA role. There are 11 RPAs active for HAEi across the world. They have experience. They have courage. They have endurance. They can help you make connections, raise awareness, and make a difference.
This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024
Representatives from our Americas MOs shared how they use some of the tools and services offered by HAEi and the impact they have on their own advocacy. RPAs Javier and Fernanda facilitated the session, performing double duty as translators as each MO representative spoke in their native language.
Lucas Benicio da Silva from Brazil explained how he uses the Emergency Card: “Thanks to the Emergency Card I presented in hospital environments, I could be quickly assessed and given the best possible care. The back of the card provides guidelines for emergency treatment, making it much easier when I’m seen by professionals who take care of my case in hospital networks. Thanks to the HAE Emergency Card. I can say it has saved my life several times.”
Raquel Fuentes from El Salvador explained the impact of the Emergency Department Poster in her country, “When a patient in El Salvador visits most medical centers, the doctor does not know about the disease. We’ve placed the flyers outside of the allergy and immunology area. This helps with patients who might currently be misdiagnosed. I feel like we create more awareness. It means that the next time, the doctors will know what is and isn’t going to work.”
Carla María Goachet Boulanger from Peru and Michelle Coronado from Panama shared their experience of the social media resources provided by HAEi.
Carla said, “We share the resources HAEi provided as images and short reels on Facebook and Instagram. This means we do not need to invest money in creating these things. We can just re-post information or use free tools like Canva to add music or make short videos.” Michelle added, “These have helped us a lot in finding patients. They see the posts and tell you that I have this. It means you do not feel alone.”
Using HAEi Hosted Websites means you can be online quickly and easily. Caroll Batista from the Dominican Republic said, “ They helped provide me with an email, and I was able to create the webpage. The support, continuity, and follow-up they gave me have helped me a lot, as obviously, I am not a professional in the area. I recommend it to other countries. It really helps us to find more patients and raise awareness.”
Michelle Cooper from Canada recommended HAEi Advocacy Academy as a source of education and learning: “I’ve been finding out some of the things that I didn’t know. There are so many programs on there. It’s been great for raising my level of understanding of advocacy. We’ve invited all of our advocacy committee members to do it, and we really encourage our board members to do it because advocacy is such a big part of what we’re doing now.”
Turning to Michelle Cuevas from the USA, the hosts asked about her experience with HAE TrackR. Michelle explained, “In the US, we have to go through an insurance reauthorization process, and many insurers are now asking patients to provide information about their attacks. HAE TrackR allows you to record your attacks. You can set reminders about when your next treatment is due. It’s very safe and secure, and you don’t have to worry about companies getting your information.”
Sandra Nieto from Mexico explained how she used data secured through HAEi’s Research Methodologies to secure positive action on HAE from the Government and physicians, “The survey yielded very important data. We presented it at the Latin American Congress of Immunodeficiencies held in Mexico City. We showed that Mexican HAE patients were not going to the emergency room for fear of being given ineffective medicine. This created alarms among the medical society; they understood they were failing because of their ignorance of the disease. It created awareness among medical personnel across Latin America.
In our presentation to the Government, we could show that patients without treatment lost 20 days being sick in a period of 4 weeks. We are talking about an economically active population, and obviously, it is not in the government’s interest for people to be sick without working because this creates higher expenses.
We convinced the Government to issue a decree that in Mexico, every year hae day :-) will be celebrated. Furthermore, all the patients who have HAE in Mexico are vulnerable people who have rights that must be respected. This will give rise to more initiatives within the Chamber of Deputies to achieve laws that can improve our quality of life and allow us to access all treatments free of charge.”
Several MOs then spoke about the various activities they organize for hae day :-). Michelle from Canada told everyone, “We encourage all of our members to participate in the HAE activity challenge and to post activities on the website. For many years, we were number one. This year, we’re putting a challenge out to our members again. We really want to get closer to the top of the list again!
Last year we had politicians stand up in Parliament and announce hae day :-), which was perfect. For Rare Disease Day, some local monuments and bridges have been lit up. This year for hae day :-) we want to light everything up purple.
Carla from Peru uses hae day :-) to organize lots of different types of activities: “This year, in health, we are planning to give a talk—hopefully with educational credits—on Angioedema at the Medical College of Peru with Dr. Calderón; for children, we are planning to tell many stories about families with HAE, which we can take into schools; and in sports, we are organizing a soccer championship—there will be a Peruvian Cup for the winner.”
Finally, the hosts turned to Michelle from Panama to ask about hae day :-) in her country, “In the past, letters were sent to public institutions, hospitals, clubs, and some private banks to light up their monuments and buildings, with the purple and light blue that defines HAE. We tell them that the disease can be fatal and that medicine is not available. Almost all the institutions have supported us.
We have also shared flyers in different hospitals and offer talks about angioedema. Dr. Olga shares information in her hospital and presents photos of HAE episodes.”
This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024
HAE in the Americas – MO Panel Discussion
Javier and Fernanda brought representatives of all the Member Organizations to the stage for the Americas MO panel discussion. For many representatives, this was their first time speaking at a conference, and we truly appreciate everyone’s contributions. Here we report a summary of the questions and responses.
The first question was, how is HAE diagnosed in your country? Each country responded, and the disparity in getting an accurate diagnosis was clear. Some countries have doctors who know about HAE. Some countries have access to testing; blood tests and genetic testing. Some countries have both. Many countries have none.
Panel members were then asked, why did you become an advocate?
Nicolas Velasquez from Colombia answered: “I have a personal and professional commitment to the cause. I have lived in Colombia. I have lived in the United States. No country is perfect. But I am privileged, and I have a voice. As a father, I know that there may be one person in this country somewhere who doesn’t have the same access that I had, and that is why I became an advocate.“
Edison Galarraga from Ecuador said: “There are many drivers for many people, but my driver was my family. My son was diagnosed, and so I understand that it’s a fight. It’s a fight against the government, against institutions to be able to have access to the quality health care that is needed. You need to keep at it. The end result is what’s important, and that’s what moves me.”
The panel then discussed advocacy and the patient voice, why it is important, and what your future plans as an advocate are. The key message on the importance of advocacy is raising awareness of HAE to get access to medicines. This is the common fight: to be able to live a better life.
Plans for the future include collecting and using data to support activity, pushing for the approval and reimbursement of medicines, maintaining access to those medicines once they are available, expanding the reach of our community, and getting more people involved in clinical trials.
“Data is important to identify who we are, and how many we are. We need to identify ourselves to show people that we are important. If you don’t have data, we do not exist,” was a comment from Renata Martins, Brazil, and Carla Boulanger from Peru said: “I’m a patient. It’s very important to raise your voice, in your country. Because if the patients themselves don’t speak up, then the education is not going to have an impact.”
In a quick-fire final question, the panel members were asked for a one word answer to what is the number one priority for your country?
This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024
Patient Voices – In Our Own Words
The audience then heard from three courageous women intent on telling their personal stories to inspire and educate their peers. All three gave powerful speeches that resonated with all in the audience, who showed their appreciation with prolonged applause for every speaker.
Taira Corrales Gonzalez , Costa Rica
I am 16 years old, and I am from Costa Rica.
Today, I want to tell my story and how I have managed, along with my family, to cope with this disease.
The first person to be diagnosed in my family was my grandfather. His name was Gerardo Gonzalez Medina. He was diagnosed at the age of 60 and passed away from angioedema four years ago. Years ago, in Costa Rica, the knowledge of HAE was scarce. For this reason, I can say that my grandfather’s death occurred because the doctors did not have the correct knowledge to treat him. Today, approximately 70 patients around Costa Rica have this disease. Costa Rica is still working on a law to protect us as patients of a rare disease.
My C1 and C4 tests were performed in a private medical center since the Costa Rican Social Security Fund did not perform such tests. I was the first person to receive a genetic test at the Children’s Hospital. Patients with HAE only had danazol or fresh frozen plasma, which caused me a skin allergy. Costa Rica has evolved in treatment, and although there are areas for improvement, today, we have two drugs for HAE. Last Friday, I received -with much love and happiness- the first dose of icatibant to administer at home.
It is worth mentioning that the registration of the medicines took about seven years of constant effort. In the case of Costa Rica, a lawyer donated his time and his ability to write letters with his signature. It was impossible to work with the government without it. Achieving the medicine registration would not have been possible without his help.
I was diagnosed by Dr. Mario Martinez, a specialist in Allergology at Hospital Mexico. He was the one who diagnosed my whole family. My family has been misdiagnosed multiple times. My uncle and my mother had surgery, as the doctors thought it was appendicitis.
Seeing that Costa Rica has improved over time fills my soul with strength and peace. I remember I spent most Christmases in the hospital. It reminds me of the little arguments my mom had with the doctors because they did not understand what it meant to have HAE. As a family, we have been able to deal with the different situations that arise from having this disease.
My family lives in constant fear that my grandfather’s story will repeat itself. This year, I decided to take action and get more involved in Costa Rica. I took charge of the HAE patient group. It is impressive to see how much impact the patient community has.
I hope that Costa Rica can organize itself further in the future. I hope not to have to go to the hospital so often. I hope to be able to spend Christmas as a family. I hope that my family can be more united to understand what it means to suffer from HAE. I hope that awareness of this disease will spread and more people around the world will know about it. Finally, I hope my story has touched your heart.
Anne Warren, Canada
I’m 39 years old, and I’m from Canada. I have HAE type 1. I was diagnosed at the age of 12, but started suffering with attacks at the age of 3 to 4 years old.
At the age of three years old, I remember being sick and telling my mother, why am I here? I knew that my siblings and I experienced sickness differently. I knew I was the odd one out. Now, I’d go back to my 3-year-old self and say knowledge is power, and to educate myself.
When I was younger, there were no treatments. There were no outreach groups. There was nothing for me to relate to and nobody to speak about my disease. So, I fought for years to try to have a diagnosis.
Having the advocacy group HAE Canada helped me enormously. It was one of the leading factors of my advocating for HAE in my community.
When I was younger, attacks were mostly in my face. When I became a teenager, they went to my abdomen, feet, and hands.
A year ago, I saw a fatal accident while working as a coach driver. I had to be the first responder, and it ended up causing throat swells when previously I had none. I know that mental health and stress play a big role in HAE. You have to know yourself. You have to make sure that your mental health is good.
My grandfather passed away with HAE when he was 42 years old. When I was diagnosed at 12, I was told that I wouldn’t live a day past my 40s. I’m about to be 40 this year, and I cannot wait to go see the doctor and tell him that he was wrong.
Looking back on my treatments, they would often treat me with antihistamines, anti-inflammatories, and steroids. All did nothing. When I was in my 20s, I finally had the treatments that I needed, and now, in my 30s, I get the preventative treatments, which are a lot better.
Traveling was a no-go for me before. I was not able to go more than 100 kilometers away from my home. Now, I’m able to travel worldwide. It’s amazing to be here. Even at the airport in Colombia, I was going to be denied boarding because I was starting to have a throat swell. I had to inform the stewardess that I had my treatments; I was able to administer them, and I would be okay. I got upgraded to first-class because they were trying to say that I was not fit to travel, but I proved them wrong. I was able to travel.
One of the things that HAE Canada helped me with is to act. Social media helped me too. I know that one of my triggers is emotional. If I’m stressed it will definitely cause triggers. I was told that rashes or bruising weren’t a part or a symptom of HAE. I have realized that every time I get a bruise, within a day, I will have a swell. Now, I infuse right away.
It makes me very happy to know that more people are listening to my journey. It will help other patients to get better treatment, so don’t give up. I encourage everyone to participate in research. I’ve participated in many clinical trials.
I used to go through attacks on an almost daily basis. Now I’m getting them once or twice a week.
I keep fighting. I fight for my medication. I fight my disease. It will always live inside me. Even with a disease, you can move on and go forward.
Claudia Rafael, Peru
Eight years ago, one night I was about to go to sleep. It was late, and I received a WhatsApp message.
It was my sister Vanessa. She said to me: ‘Claudia, you have this?’ She sent me a link, which I followed. It had a lot of information about HAE. I immediately saw myself in all the information. After a bit, I realized that I had a rare disease that had no medication in my country and no cure. I fell asleep, crying then not crying, and thinking about my daughter, who was only 4 years old.
The next morning, I had two choices. My first option was to continue in denial and ask: Why is this happening to me? The second option I had was to accept what had come into my life and that it was going to stay. I returned to the information I had on the web and contacted Dr. Oscar Calderon. He graciously helped me, not only with the diagnosis. Dr. Calderon introduced me to a small group of patients. I think we were 5 or 6 patients at that time.
After getting around some barriers, we formalized and founded HAE Peru. We knew what we wanted. We wanted to work for a better quality of life for patients, which was so lacking in Peru. And so we did. In some cases, formalizing an organization tends to be long and complex. We did it in record time. When we drew up the first work plan, it lasted six months. The second work plan was for one year. It was really comforting, not only for me but also for my colleagues, seeing how little by little we were carrying out each of the projects we had proposed.
The following year, in 2018, a medicine was registered in Peru. I asked my insurance company for coverage of this medicine. You know what happened. I was denied. But the insurance company did not count on something. I was going to review my policy. I did, and I found a little paragraph whose interpretation favored me. Also, the insurance company didn’t count on the fact that Dr. Calderon had instructed me on the entire medical report that he had prepared for the insurance company, explaining and substantiating why I needed the medication in a vital way.
I left that meeting with a lot of sunshine—happy. I was sure that the answer I would get would be positive—and I got the positive answer! I believe I am the first patient in Peru to receive a drug covered by insurance in an amount higher than 80%.
I shared this process of having the medicine provided through private insurance with all the patients of the Association. Many obtained the medicine, others, unfortunately, did not have the same success.
It is here that all of us in HAE do not stop when we do not get the medicine. This is the moment when we have to persevere the most. We have learned that we have the right to health, and we have to be informed to be able to complain.
We have been working on the project of a story, told by adults for children. We are working with teachers and book editors on this, but the pandemic made funding difficult. We raised money to print 100 books and worked for 3 months to make it a reality. By the end of 2021, we got funding to make a video version and have the money for 500 books. It is now on sale, and all the proceeds will help us help even more people with HAE. The story also means we can take HAE into schools and build a truly inclusive society.
HAE Peru awakened my 17-year-old self, a law student, who today, at 44 years of age, can do a little more. We continue to work together in HAE Peru, in collaboration with Dr. Calderón and Milagros Cordoba. I am grateful for the opportunity, and I know that if there is something useful for any association, they will take it.
Find more feature articles from the 2024 HAEi Regional Conference Americas:
