This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024

HAE: 10 Things Patients Need to Know

Taking on the challenge of following powerful, personal stories was world-renowned Prof. Bruce Zuraw. Introduced by Tony Castaldo as an ‘accomplished physician and researcher who always keeps the voice of our community in mind,’ Prof. Zuraw took to the stage.

Prof. Zuraw talks about the 10 things he felt all HAE patients need to know. He told the audience that over 40 years ago, when he started treating HAE, he couldn’t have imagined the progress that would be made. That progress has to translate into better care for everyone with the disease.

Prof. Zuraw framed his 10 things around 10 questions: Why me? How will HAE affect me? What about my family? What causes attacks of HAE? Can I treat attacks? Can I prevent attacks? How do I find the right doctor? Who can I turn to for help? Can I dream about a cure? What can I do to make that dream a reality?

As an essential talk, we wanted all participants at each of our Regional Conferences to hear Prof. Zuraw. You can read more about his talks from the 2023 Regional Conference APAC and 2023 Regional Conference EMEA.

We share a few points specific to the Americas and Prof. Zuraw’s incredibly inspiring conclusion before bringing you a new interview.

How do we treat attacks?

Prof. Zuraw told the audience that while we don’t all live in countries with all the modern rescue medicines, that is what we’re fighting for.

If you can get one of the first-line rescue medicines (two forms of C1-inhibitor and icatibant), these are proven to be effective. Fresh frozen plasma or solvent-detergent treated plasma can be used in an emergency. It has C1-inhibitor in it, but it has certain risks.

All patients with HAE should have one of the modern rescue medicines available, ideally two doses. You don’t know if you’ll need a second dose or if you’ll have another attack before you can get it renewed. Prof. Zuraw reiterated that all attacks are eligible for treatment, and you should treat them as soon as possible. “Antihistamines, steroids, and epinephrine are not going to work. Don’t let doctors in emergency rooms try to convince you otherwise,” he said.

Can I prevent attacks?

Prof. Zuraw stated that patients really want a normal life. Right now, in the United States, he said, we have four approved long-term modern prophylactic medications: two different forms of C1-inhibitor (IV and subcutaneous injection) and two different medications that target plasma kallikrein.

Androgens are second-line. If you can avoid taking androgens, that’s good. If you have no other alternative, you need to use what you have.

Prof. Zuraw told the audience that treatment must be individualized, “use your critical voice, and don’t let the decision be made by a doctor only, as they don’t live your life.”

In concluding, Prof. Zuraw told the audience that his personal dream is that all patients with HAE will be able to live an entirely normal life. He said that this future will depend on you. He asked all those present to believe and to pursue it.

Global Perspectives secured some valuable minutes with Prof. Zuraw in Panama to ask him about his presentation and the conference.

Your 10 things are based on common questions. Do you get many unexpected questions from patients?

“People ask questions that are unexpected all the time! People have their own reasons for what they ask. We don’t have the answers to everything, but we always answer as best we can. Sometimes, the answers are relatively easy, and sometimes, the answer is we have the data to give an answer.”

What has changed in your talk since we met in Munich?

“Each time, I think, ‘What will patients understand, and what will make sense to people?’ I really want people to understand, so my only changes are to try to make my answers even clearer and easier to digest while still educating. I want to make sure the messages are easy to remember.”

Do you see a lot of different perspectives across the Americas?

“All patients with HAE have similar questions, and their problems are fundamentally the same. The differences are in their access to medications and sometimes their access to the health care system. The differences are more organizational and logistical, than differences between patients in different countries. People are people.”

Your talk is about 10 things. If it could only be 1 thing, what message would you have for people with HAE?

“Patients need to understand their HAE sufficiently so they can effectively advocate for themselves to get really good care. In the Americas, we’re very fortunate to have excellent doctors throughout the region. Patients have to figure out how their local doctor can contact these experts and ensure they’re getting good care. An individual patient can’t change the reimbursement system in a country. I’m confident that, over time, we will find ways to move the needle on access. But, an individual patient can take action to understand their HAE and recognize their responsibility to ensure their doctor is doing a good job; that goes a long way.”

Find more feature articles from the 2024 HAEi Regional Conference Americas:

>> Hola Americas – Let’s Take Action

>> Take Action and You Will Succeed

>> Patient and Caregiver Track

>> Youngsters Track: The Future is Bright

>> Scientific Track

>> Image Gallery

>> Scientific Poster Session

>> HAE: 10 Things Patients Need to Know

>> HAE Hot Topics

>> Latest Developments in HAE Science and Therapies

>> Expert Panel Q&A