In brief

  • Your region: North America
  • Number of countries: 2
  • Number of MOs: 2

Tell us a little about yourself

I am Tony Castaldo, I live in Virginia, USA (right outside of Washington, DC), and I have been involved in HAE advocacy for over 20 years.

Tell us a little about your region

English is spoken in the US and Canada; however, it is important to note that (1) the Quebec region of Canada speaks French and (2) there is a large Spanish speaking population in the US. Challenges in the US revolve around making sure people with HAE can obtain reimbursement for the medicine(s) they have been prescribed. People in Quebec have better access to modern therapies than those in other parts of Canada where HAE Canada is putting great effort into getting modern medicines approved and reimbursed by regulatory authorities.

What are you most proud of being able to do for the countries in your region?

The US organization is HAEi’s largest member and is delighted to participate in a variety of HAEi-HAEA “joint” research projects.  We are very proud to have recently rolled out a Spanish version of our website.

The HAE Canada President is an effective and experienced advocate who is doing a remarkable job in navigating the “nuanced” regulatory agencies and processes that are involved in approving and granting access to modern medicines. I was honored to write a letter to Canadian regulators that supported HAE Canada’s testimony at a hearing regarding HAEGARDA approval.

It is also very important to note that the HAE Canada President has been leading a longstanding and vigorous charge to win treatment for people diagnosed with HAE with normal C1-INH.

I am delighted to have had regular contact with HAE Canada over the years, and the President is very interested in taking advantage of the services HAEi can provide.

What changes have happened for people with HAE in your region whilst you have been looking after this region?

HAEGARDA has been approved in Canada and should be available throughout the country in the April 2021 timeframe. Lanadelumab is available in Alberta and HAE Canada is hopeful other provinces will also allow access.

HAE Canada is excited about participating in HAE Day 2021 and the President has formally requested that HAEi Leadership attend a HAE Canada Board meeting to raise the “level of comfort” and show the benefits of HAEi Connect, our secure membership database platform for member organizations, as well as our HAE apps; HAE TrackR and HAE Companion.

Orladeyo is being rolled out in the US at breakneck speed, and we expect two or three clinical trials to start in 2021. The US organization is rolling out a complete website refresh in honor of hae day :-). HAEA will conduct a Virtual 2021 Summit using a platform developed by the organization’s IT team. The virtual Summit will begin on hae day :-) and will be held on 3 additional days throughout the year. HAE Canada and any other interested party is welcome to register and attend.

What Next Steps will you be taking to support your region?

Arranging a meeting with HAEi Leadership and the HAE Canada Board of Directors is a very important priority, although nothing can be scheduled until travel restrictions are lifted. Hopefully, we can have the meeting this summer. This meeting will likely result in HAE Canada’s full uptake of HAEi’s services.

We are also supporting HAE Canada’s effort to obtain ACLS/PALS certification on the curriculum for first responders in Canada and the US. This program stands for certification in Advanced Cardiac Life Support and Pediatric Advanced Life Support. We are specifically requesting that the ACLS/PALS training certification program add HAE to their curriculum. This training is highly relevant because it will educate a first responder on what to do if there is an encounter with someone whose airway is closing because of a laryngeal attack. Dr. Wasserman from Canada and Dr. Riedl from the USA are the medical advisors who are helping us with this request.