HAEA in Action May 2020 Newsletter Message from Tony J. Castaldo

Dear HAEA friends,

hae day :-) 2020 honors our community's steadfast commitment to living a life beyond HAE. Our group of 8,000-HAEA friends has consistently overcome seemingly insurmountable obstacles to win access to modern HAE medicines, and are now applying that same tenacity to get through the COVID-19 pandemic. While we have to postpone or cancel some of our in-person events, we have created virtual spaces where HAE friends can share experiences that support a healthy and happy lifestyle as part of commemorating hae day :-)!

The incredible resilience and courage of the HAEA community means that, together, we will continue working toward the important goals that we all share, including: 1) increasing patient and physician education that enables early and accurate diagnosis, 2) developing HAE education, awareness, and empowerment programs that support community advocacy, and 3) championing groundbreaking research to develop improved therapies and ultimately find a cure.

This year, we ask that you join the HAEA community by participating in a unique hae day :-) campaign – How to HAE (Host A “virtual” Event). How to HAE will offer our members various ways in which to raise awareness, raise funds, or simply raise their spirit as we all spend more time at home.

It's times like this, when we as a community can unite and make extraordinary things happen. We look forward to you joining us during this unique hae day :-).

Tony's signature

Tony Castaldo
US HAEA President & CEO

Learn about How to HAE (Host A “virtual” Event)

  1. Raise awareness: There are several ways you can raise HAE awareness from home. Order a pocket Guide to HAE and read it to your friends through Facebook Live or Zoom, or you can order a copy of Nico’s Lunchbox children’s book (or download the audiobook version) and invite family and friends to a virtual reading! Join forces with others in the HAE community and share your HAE stories by hosting your own virtual event using your preferred social media app. Then, share your stories and experiences by joining in the #BeyondHAE social media campaign.

  2. Raise funds: Start a Facebook or Classy Fundraising campaign. Encourage your friends and followers to make a donation to the US HAEA via Facebook or through our events portal at haea.org. Funds raised will go to our three patient programs – the HAEA Pam King Scholarship Program, HAEA Chris Whalen Compassion Fund, and HAE Research.

  3. Stepping Forward Together: Join us for a month-long community virtual walk, run, or ride, and log in your steps directly on our site! Together, we can promote a healthy and active lifestyle even while at home.

For more information on hae day :-) or How to HAE, please contact Mike Mallory at mikemallory@haea.org

HAE day

2020 hae day :-) Stepping Forward Together Virtual Walk

This year, the HAE community has a unique opportunity to celebrate hae day :-). Join the HAEA along with your friends and family and let’s Step Forward Together for the 2020 hae day :-) Virtual Walk! This fun HAEA event will take place from May 1 through May 31, 2020, and there is no cost to participate! Challenge yourself and help us reach our goal of completing 25,000 miles during the month of May to spread HAE Awareness. Not a walker? No problem! You can also track your other activities and convert them into steps! Compete for awards by participating in our fun weekly challenges throughout the month! Register today and share it with your family and friends!

If you have any questions, please contact Mike Mallory at mikemallory@haea.org

CLICK HERE to register, set up your team and Step Forward Together for HAE Awareness!

HAE Speaks Podcast

HAE Speaks Podcast

The US HAEA is excited to announce the launch of HAE Speaks, a podcast series on important HAE topics. Listen to patients, caregivers, and medical professionals discuss strategies to manage stress, prepare for a visit with your HAE specialist, care for a loved one with HAE, what to expect when you are newly diagnosed, the road to treatment, and much more. Listen today on your favorite platform!

Episode 1 is hosted by Missy. In this episode, she talks about being a caregiver to her husband, Mike, and daughter Abby.

Do you have a topic, question, or idea you would like to hear more about?  Send your suggestions to Mike Mallory mikemallory@haea.org

CLICK HERE to listen to the first episode of the Podcast!

HAEA Virtual Meet and Greet Event

HAEA Virtual Meet & Greet Events

Social distancing doesn't mean we need to be disconnected! We know how much everyone loves meeting with fellow HAE families, so we are launching the HAEA Virtual Meet and Greet Events! These Virtual Events are designed to give you an overview of the programs and services available through the HAEA as well as present an opportunity to virtually connect with other patients in your area. If you are interested in participating in an HAEA Virtual Meet and Greet and connect with people from your area, please check out the HAEA Events Calendar, or reach out to Mike Mallory at mikemallory@haea.org.

Through this program, you and your family member or caregiver can:

Upcoming HAEA Virtual Meet & Greet Event

Monday, May 18th: HAEA Virtual Meet & Greet - New Mexico - 6:00 PM M.T.

Register Here

Participants will receive an HAEA Goodie bag!

For more information, please contact, HAEA Patient Advocate, Mike Mallory at mikemallory@haea.org or (513) 858-9370.

HAE Health

HAE Health

The HAEA Health Team is ready to support you as you manage your HAE and overcome barriers to lead a normal life. We offer kind and compassionate support to guide patients through a diagnosis, offer physician referrals, and provide assistance with your insurance denials and reimbursements.

Obtaining a correct diagnosis and having an optimal HAE treatment plan are the cornerstones of a better life. We have built a nationwide network of knowledgeable physicians who know how to diagnose and treat HAE. Our Health team provides referrals to these physicians and can also arrange appointments with the highly skilled angioedema specialists at the US HAEA Angioedema Center at the University of California at San Diego.

Furthermore, many in our HAE family wish to connect with others to share life situations and challenges being faced when dealing with HAE. To meet this need, we offer a virtual support group that provides a warm and caring environment conducive to supportive, compassionate discussions, and problem solving.

For more information or for assistance, please contact the HAEA Health Advocates at 866-798-5598.

Insurance concerns during COVID-19 - Special Open Enrollment Period

If you have lost your job or experienced a reduction in hours due to COVID-19, you should know that some states have opened a “special enrollment period” for health insurance. Due to the Coronavirus Pandemic, there are options available to acquire insurance in many plans including those through the Affordable Care Act (ACA) exchange at https://www.heathcare.gov.

For more information, or if you need assistance, please reach out to one of the Health Advocates with any questions.

Request the NEW US HAEA Member ID Card

Don't leave home without it!

The US HAEA Member ID card makes sure that you can always be identified as someone who has HAE, offers key information on your prescribed medication, contact information for your treating physician, and your family emergency contact.

US HAEA Member ID cards are available for all of your HAE-affected family members.

To receive your US HAEA Member ID card in the mail, simply fill out the online form for your card, and for each additional member of your family. Not all of the information collected in the form will appear on your card.

Contact any of our kind and compassionate HAEA Patient Advocates if you have questions or need any assistance. At the HAEA, we are here for you!

Simply fill out the online form for your NEW US HAEA MEMBER ID CARD HERE!

In Case you Missed It

Visit the HAEA Cafe to view, COVID-19 and Staying Mentally Healthy, hosted by Troyce Venturella, MPH, RN, CCM. During these unprecedented times, staying mentally healthy can help reduce stress and help your overall wellbeing.

Watch the Webinar VIDEO here!

Reach out to the US HAEA Health Advocates at 866-798-5598. We are here for you whether you: need assistance with insurance selection, need a new physician referral, need to update your member information, want to join a support group, or just have a question to ask. We look forward to connecting with you!

May Legislative Update

Legislative Update

Legislative activity on healthcare has ramped up significantly as Congress acts to provide COVID-19 relief. Some provisions of these relief packages will have short and long term implications on how we access healthcare.

On April 30th, Dane Christiansen from the Health and Medicine Counsel of Washington joined John Williamson in a webinar to present an update on legislative actions due to COVID-19. In addition to providing economic support to individuals and businesses, the recently enacted laws have injected nearly $14 billion in additional emergency public health funding for the National Institutes of Health (NIH), the Centers for Disease Control (CDC), the Food & Drug Administration (FDA) and the Biomedical Advanced Research and Development Authority (BARDA) to combat COVID-19 spread. Additional resources were also allocated for PPE, hospitals, health centers, and providers, TRICARE, and Veterans Hospitals. COVID-19 relief packages also increased flexibility for the use of “telemedicine” and “home health,” and it specified cost coverage options for COVID-19 testing under Medicaid, Medicare, and the uninsured, among others. To learn more, you can watch the HAEA Webinar: Legislative and Regulatory Changes in times of COVID-19.

To find out more, or to join the HAEA’s grassroots advocacy efforts, please contact John Williamson at john@haea.org.

In case you missed it, you can watch the HAEA Webinar: Legislative and Regulatory Changes in times of COVID-19 HERE!

Clinical Trials

Clinical Trial Updates

Message from BioCryst

APeX-S, a study of an investigational oral medication for preventing HAE attacks in patients 12 and older, has over 35 active trial sites across the US with more sites continually coming on board. Despite COVID-19 complications, APeX-S trial sites are committed to continue study activities safely, including the provision of study medication and taking on new patients! Contact John Williamson for a list of active trial sites and their locations.

Message from Takeda

Takeda has closed screening and enrollment on the two open studies at this time. The study teams will be communicating any updates or questions to local sites as appropriate. Patients already enrolled will continue in the trial and Takeda is committed to working with the local site to support them.

If you have HAE type 1 or 2, HAE with Normal C1 or AAE, and are interested in learning about new clinical studies to prevent attacks, please contact John Williamson at john@haea.org to see if there will be an active clinical trial site in your area.

HAEA Youth Legislative Advocacy Training Workshop

HAEA Youth Legislative Advocacy Training Workshop

What is HAE Legislative Advocacy?

The HAEA Youth Advocacy Program encourages young people to be active players in shaping the perspectives of elected representatives in Congress. By participating in HAEA Youth Advocacy initiatives, we can amplify our collective voices to ensure that issues important to HAE patients are heard in the states' and federal governments.

Goals of the Youth Advocacy Program:
We have developed 6 Legislative training activities for participants to work on over the next few weeks. We will send one activity a week for registered participants to complete. Each activity will include a link to a form where answers can be submitted.

Complete all of the activities and to receive a Certificate of Completion for the HAEA Legislative Advocacy Youth Training Program.

The first 4 activities are now available. Use the links below to access the activities and the link to the form to submit answers.

Activity 1: Your HAE Story

Activity 2: Learn about your House and Senate Representatives

Activity 3: Understanding the Issues

Activity 4: Relating to the Issues

HAEA Youth Webinar: The Importance of Youth Advocacy

In case you missed April's HAEA Youth Edition Webinar, it is now available on YouTube. Learn about the role that youth can play in HAE awareness and advocacy and why it's important for young people to get involved in advocating for our community. Hear from two HAEA Youth community members as they talk about their personal experiences advocating for themselves and the HAE community.

Click Here to Watch!

#BeyondHAE Challenge

Join The #BeyondHAE Challenge!

Are you ready to participate in the latest #BeyondHAE Challenge? We want to know what you’re doing to keep yourself busy while most of our country is spending an increasing amount of time at home. Are you focusing on homework? Are you binge-watching a good TV show? Are you reading a great book? Maybe you’re baking goodies with your family. Whatever you’re doing to pass the time, we challenge you to take a photo or video, and post it online using the #BeyondHAE hashtag.

How to Participate:

Click here to download the #BeyondHAE logo and order a sticker.

HAE Attack Support Kit for Kids
HAE Attack Support Kit for Kids

Has your young child recently experienced a bad HAE attack? Could they use a little encouragement and support? The HAEA and Brady Club want to make children feel supported every step of the way by sending an HAE Attack Support Kit to brighten their day.

HAE Attack Support Kits are available for children between the ages of 2 and 13, who reside in the United States and have a confirmed HAE diagnosis. *One kit per child and the child must be a member of the US HAEA to qualify.

Click here to access the HAEA membership form.

If you would like an HAE Attack Support Kit sent to your child, please email Lisa Facciolla at lisa@haea.org with your mailing address, plus a little information about your child. We will send something special directly to them in the mail.

#BeyondHAE Podcast
#BeyondHAE Podcast - May's Episode (Jack)

May's #BeyondHAE podcast episode is hosted by 14-year-old Jack. Jack's HAE attacks have always been pretty manageable until he experienced his first throat swell and began to feel overwhelming anxiety as a result. Listen to this month's #BeyondHAE podcast episode to hear Jack's story and how he learned to overcome his anxiety.

Listen to the Podcast here!

Patient Spotlight - Adina
Patient Spotlight

Every month throughout 2020, we will spotlight a different patient and their unique HAE story. This month we are spotlighting Adina. We hope you enjoy the following story during the month of May.

"My name is Adina, and I'm from Louisville, Kentucky. For me living with HAE means adapting to difficult situations, advocating for both myself and all patients, and appreciating the progress that's been made when it comes to available treatments.

Having access to medication that prevents episodes lets me live a mostly swell-free life. I don't have to live in fear of the next episode or limit certain activities to avoid triggers. I now have the confidence to actually live my life. Before having access to medication, the anxiety of 'what if I have swelling in my airway' loomed over me like a shadow that would grow any time I had a sore throat. While our current treatment options sometimes have their own obstacles, I am incredibly thankful for having medication that prevents episodes and treats any breakthrough swells that sneak up on me."

Treatment Education Series Webinar

Webinar Link: https://haea.zoom.us/j/96521831129  
Phone: (646) 558-8656 (Webinar ID: 965 2183 1129)

Click here to say you're going!

The HAEA is a patient advocacy and research organization committed to actively engaging our community in a wide variety of grassroots activities that promote disease education and awareness. We provide personalized services to address the unique needs of HAE patients and their families, which include helping them secure access to and reimbursement for modern HAE medicines. Our great success in supporting clinical research has resulted in a variety of FDA-approved therapeutic options. We work closely with expert physicians to continuously upgrade the patient quality of life through improving diagnosis and knowledge of the disease, and encouraging a tailored, patient-focused use of available therapeutic options. The HAEA is product-neutral and continues to enthusiastically support drug discovery research aimed at the next generation of HAE therapies.

The US Hereditary Angioedema Association
10560 Main Street, Suite PS40
Fairfax City, VA 22030


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