HAEA in Action December 2019 Newsletter
A year of Possibilities

2019 - A Year of Possibilities!
The US HAEA is more committed than ever to the fundamental principle that has always guided us -- helping every HAE patient lead a life that is unhindered by HAE. We have made great strides in the past 20 years, but vitally important work remains. Going forward we must protect access to the currently available HAE therapies, while pushing for research that brings even better medicines to our children and future generations.

It has been a very busy and productive year for our community, and the HAEA is grateful that so many of you took the time to participate in our HAEA events! We had record setting participation in: 2019 HAEA National Patient Summit, HAE IN-MOTION® 5K run/walk events hosted across the country; HAEA Treatment Education series webinars; Capitol Hill Day; Youth Advocacy and learning activities; HAEA Meet & Greets; hae day :-) events; #Families4HAE fundraising, and the Advance HAE Scientific Registry.

Together, we have made great strides in the quest for improved HAE treatments and supporting groundbreaking research to continue to solve the remaining scientific mysteries of HAE. We are also happy to announce that the Pam King HAEA Scholarship Fund provided financial aid to help 74 college students achieve their lifelong educational goals and life aspirations.

We plan to expand our core services in 2020 with a particular focus on making sure our patient community has adequate access to and reimbursement for HAE therapies. HAEA friends can expect us to continue offering patient-centric programs and activities geared toward our longstanding goal - improving the quality of life for everyone in the HAEA community.
We look forward to being part of your happy and healthy 2020!


US HAEA President & CEO

Happy Holidays

Support the HAEA this Holiday Season!
As we approach this busy season, please take a moment to remember the true spirit of the holidays and give back. From patients who have yet to receive an accurate diagnosis to families who struggle to make ends meet to travel for care, there are many within our community who still need help. Giving back has never been easier. You can designate the HAEA as your charity of choice at smile.amazon.com. It’s a simple, automatic way to continue to support HAEA, at no extra cost to you.

You can also contribute directly to the HAEA by clicking here!

Every contribution counts. Your gift will support three of our main programs:
• The Pam King HAEA Scholarship Program, which offers college tuition grants to HAE patients
• The Chris Whalen Compassion Fund, which offers financial assistance for patients in need who must travel to see an HAE medical specialist
• The HAE Research for a Cure, which funds the HAEA Scientific Registry and research initiatives

#Families4HAE Fundraising Campaign!

#Families4HAE Fundraising Campaign!
Thanks to the generous support of community members like you, we were able to raise key funds for the HAEA Youth Programs. We were overcome with excitement when each of your donations came in, so thank you. Thank you for helping ensure that the next generation of HAE patients and caregivers are given opportunities to learn and grow as advocates, knowing that their voice matters and that they CAN make a difference.

December Health Team Focus

December Health Team Focus
It's the most wonderful time of the year - but also one of the busiest! Please take a moment and go over this month's top recommendations to stay healthy through the holidays.

• Keep Moving - Don't let exercise be the thing you give up because you are busy. Keeping your body moving increases serotonin levels, which in turn helps boost your mood. It’s a great way to reduce stress naturally! • Pamper Yourself - By treating yourself well, you'll be able to make the holiday season memorable for others in your life. Find something nice to do for yourself each week to help you unwind. • Eat Well - Yes, everyone will indulge in a little pie, it's the holidays after all! Make everything else you eat even healthier than usual. • Sleep - The backbone for a healthy body, without it we will fall flat. During the holidays it is more important than ever to get those Z's • Make your HAE health a priority - Order your refills early so you can allow extra time for delays due to weather or the holiday bustle. Keep on schedule with your preventative therapy. Treat early for any breakthrough attacks.

2020 Insurance Open Enrollment

Don't wait - deadlines are just around the corner for insurance selection. Remember to be proactive, research and compare! The HAEA Health Advocates team is here to answer your questions and provide direction as well. Make sure to keep an eye on the upcoming deadlines and let us know if we can help! Note that states may opt to allow for extensions to open enrollments but these are not guaranteed so don't wait! 

The HAEA Health Advocates are here to answer your questions. Make sure to keep an eye on the upcoming deadlines and let us know if we can help!


Schedule an appointment with the experts at the US HAEA Angioedema Center

Get a head start on your healthy New Year! Getting the correct diagnosis and treatment plan can be the start to a healthy life.

The experts and team at the US HAEA Angioedema Center at UCSD can be a great resource for you and your local healthcare team in getting the diagnosis and treatment plan that works best for you. Our goal is to make sure you are able to live your fullest life with your angioedema.

We offer travel grants based on financial need to assist with getting to the Center.

For more information, please contact an HAEA Health Advocate at 866-798-5598 and we would be happy to assist you.

Legislative Update
The US HAEA is continuously monitoring any challenges that may threaten patient access to therapies, but we need your help in advocating on behalf of the HAE patient community. Together, we can ensure that patients continue to have access to the therapy that best meets your individual needs.

Urge your federal representatives to support step therapy reform by cosponsoring the Safe Step Act (S.2546/H.R.2279)

Otherwise known as a "fail first" protocol, step therapy is an insurance practice which mandates that patients try and fail medications preferred by their insurer before they can utilize treatments prescribed by their doctor. While the practice can sometimes be used to contain the costs of prescription drugs, it can also have serious negative impacts on patients, including delayed access to the most effective treatments, severe side effects, and irreversible disease progression.

Step therapy protocols may ignore a patient’s unique circumstances and medical history. That means patients may have to use medications that previously failed to address their medical issue, or - due to their unique medical conditions - could have dangerous side effects.

If you are interested in contacting your congressional representative in support of the safe step act please call your local representative at (202) 224-3121, or find him/her here https://www.house.gov/representatives/find-your-representative.

Other Legislative Updates

The Department of Health and Human Services announced that the Centers for Medicare and Medicaid Services (CMS) is issuing two rules that increase price transparency to empower patients, increase competition, and require that pricing information be publicly available.

The two new rules are:
1. The Calendar Year (CY) 2020 Outpatient Prospective Payment System (OPPS) & Ambulatory Surgical Center (ASC) Price Transparency Requirements for Hospitals to Make Standard Charges Public Final Rule and

2. The Transparency in Coverage Proposed Rule.

The first rule will require hospitals to provide patients with clear, accessible information about their standard charges for the items and services they provide.

The second rule would require most employer-based group health plans and health insurance issuers to disclose the price and cost-sharing information upfront. They would also need to disclose publicly negotiated rates for in-network providers and allowed amounts paid for out-of-network providers. This will encourage health insurance issuers to offer new or different plan designs that incentivize consumers to shop for services from lower-cost, higher-value providers by allowing shared savings payments in their medical loss ratio (MLR) calculations.

We will continue to monitor these changes and advocating on behalf of HAE patients. To find out more, or to join the HAEA’s legislative advocacy efforts, please contact John Williamson at john@haea.org.  

Beyond HAE Podcast

#BeyondHAE Podcast Series!
The HAEA Youth Leadership Council invites you to listen to their new podcast series, #BeyondHAE Podcast. Each month they will upload a new youth-produced episode, featuring a different youth host who will share their unique stories with you.

Find the #BeyondHAE podcast on all major podcast platforms including iTunes and Spotify. Don't forget to subscribe to get an update when new episodes are available.

Winter Brady Club Book

Brady Club Activity Book Winter Edition

The last Activity Book of 2019 will be in the mail shortly! Keep an eye on the mailbox for a new set of activities and stories from Brady's Friends. If you have a child between the ages of 5 and 12, make sure to register for the Brady Club! It's QUICK and EASY to register and we will send your kids something fun in the mail every quarter! We promise they'll love it! 

Join the Brady Club here!

Pam King Scholarship Program

Pam King HAEA Scholarships
Congratulations to the Spring 2020 Pam King Scholarship Program recipients! This incredible group of students exemplifies what it means to overcome obstacles with the goal of achieving your dream. We are proud to support students with HAE who are seeking to improve their lives through academic achievement. Applications for the Fall 2020 semester open on Feb 1, 2020. 

Nico's Lunchbox Book Signing

Nico's Lunchbox is Now Available!
We are thrilled to announce that Nico's Lunchbox is now available with a suggested donation of $10- we'll cover the shipping cost. This first of its kind children's storybook series about HAE will make the perfect holiday gift or stocking stuffer! All orders made before December 18th will arrive on or before December 24th and can be gift wrapped with a personalized note.

We would love to hear your thoughts about Nico's Lunchbox after reading it.

 Please take a few moments to provide feedback HERE!

Order your COPY today HERE!

the mobile app

Have You Downloaded the handy Advance HAE Mobile App?
It's free!  Just go to your app store and search for "ADVANCE HAE"

The app:
We have NEW FEATURES to let you set reminders directly on the Advance HAE app! These can include reminders to:
The new APP is available now on iPhone and is coming soon to Android!

Check out the Advance HAE APP new features here!

Current Clinical Trial 4

Current Clinical Trial
Right now, patients are being enrolled in the APeX-S study, a worldwide clinical research study to investigate the long-term safety of an investigational oral medication to prevent Hereditary Angioedema (HAE) attacks.

If you have Type I or II HAE, and are interested in learning about an oral medication that could become an alternative to injections or infusions to prevent attacks, then please contact John Williamson at john@haea.org to see if you qualify.

HAEA Spotlight Stephanie

HAEA Spotlight
Every month throughout 2019, we spotlight a different patient and their unique HAE story. This month we will be Spotlighting Stephanie. We hope you enjoy following her story during the month of December.

"My name is Stephanie de Leon. I am from Southern California and can trace HAE in my family back to my great-grandmother. I lost a second cousin and my dad to complications involving HAE. I now identify two separate 'phases' of my life: before HAEA and since HAEA. It was not until I found Bruce Zuraw and the HAE Association that we were able to relax and live what I happily refer to as a "normal" life!

The possibility of a "normal" life was not something I had ever imagined. The unpredictable occurrence and severity of HAE attacks once restricted activities that most people would consider fun, spontaneous, or even routine. I now believe the possibilities are infinite: my daughter just spent two months in Washington D.C. for an internship that we previously would have never even considered. My son is starting college and working towards a career as a firefighter." - Stephanie


2019 HAE IN-MOTION® Fundraising / Awareness Events!

A big thank you to everyone who helped make the HAE IN-MOTION® events great! We have wrapped up another successful year and we are looking forward to an amazing 2020! We could not have done it without you!

HAEA Meet & Greet
Patients, caregivers, friends, and family enjoyed the opportunity to meet other patients and caregivers in their area. Back by popular demand, HAEA hosted Meet & Greets will continue in 2020. You can find events and register on the news and events calendar at HAEA.org.

Fundraising & Awareness Events
Many patients have hosted their own events to raise awareness and support the great programs offered by the US Hereditary Angioedema Association. We have recently added a new web feature to help facilitate these great events. From family days to marathons, the opportunities are endless! 

Do you have a great idea for an event? Want to host an event near you? Reach out to Mike Mallory at (513) 858-9370, mikemallory@haea.org! 

Treatment Education Series Webinar

Webinar Link: https://haea.zoom.us/j/146103138 
Phone: +1 646 558 8656 (Webinar ID: 146 103 138)

Click here to say you're going!

HAEA Webinar Medicare

Webinar Link: https://haea.zoom.us/j/405333422  
Phone: +1 646 558 8656 (Webinar ID: 405 333 422)

Click here to say you're going!

Upcoming Events

HAEA Meet & Greet!

The HAEA is planning a Meet and Greet event in your area. This Meet and Greet is designed to offer you an overview of the great programs available through the HAEA, as well as give you an opportunity to connect with other patients in your area.

Through this program, you and your family member or caregiver can: Learn about HAEA programs and services available to you, hear from HAEA staff, ask questions, meet and gain valuable information and support from others in the HAE community.

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

Meet and Greet Scottsdale invitation

Click here TO REGISTER! 

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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