Health insurance is essential for all HAE patients and enrollment deadlines are quickly approaching. The HAEA Health Team is available to help you navigate the selection process as you seek to identify the best option available.
Open enrollment begins this month. Now is the time to conduct research on your available options so you can find the right fit for your future healthcare coverage.
Due to the COVID-19 pandemic, the Affordable Care Act (ACA) open enrollment is currently underway and will end on December 15th. Keep in mind that if you miss the December 15th deadline, you will have to wait until January 2022 to receive coverage.
Medicare recipients: The Medicare Advantage or Medicare Prescription Drug Plan open enrollment period will run from October 15th until December 7th. If you are not satisfied with your current Medicare Drug Plan and want to switch, this is the time to make the change.
Key Open Enrollment dates
For more information or for assistance navigating the Open Enrollment process, please contact an HAEA Health Advocate at (866) 798-5598.
2020 HAEA Virtual Capitol Hill Day
Wednesday, October 21, 2020 from 4:00 - 5:00 PM EDT
Every year, the HAEA organizes a large group of people with HAE and caregivers who visit over 50 strategically selected House and Senate offices. During these visits, HAEA friends showcase their advocacy skills by presenting the HAEA community's key public policy goals to legislators. Our experience shows that legislators respond when we take the time to share our stories and explain the needs of the HAEA community.
Unfortunately, COVID-19 prevents us from traveling to Washington, D.C. for in person meetings. Nevertheless, we cannot let an entire year pass without engaging our elected leaders and advocating for policies that protect the HAEA community in areas such as health insurance coverage, charitable assistance programs, and access to therapies.
This year, we will make our voices heard by conducting an HAEA Virtual Capitol Hill Day on Wednesday, October 21, 2020 from 4:00 - 5:00 PM EDT.
Register here to join us for this exciting and important event that will feature:
Register now! We look forward to seeing you on October 21st.
We are pleased to welcome Hannah Carroll and Jessica Dean to the HAEA Team. You may know Hannah and Jessica as members of the HAEA Social Media Internship Program and as Pam King HAEA Scholarship recipients. They also served as volunteers during the 2019 US HAEA National Patient Summit. Hannah and Jessica join the HAEA as Advocates and Social Media Associates, supporting the needs of the HAEA community and expanding our communication efforts. We are excited to welcome them both to our extraordinary Team as we continue to serve the HAEA community.
Are people with HAE more susceptible to COVID-19?
Does HAE or taking HAE medicines affect the severity and/or duration of an infection?
The HAEA cares deeply about our community and is proactively working to answer these important questions as we battle the COVID-19 spread. WE NEED HELP FROM YOU AND EVERY MEMBER OF YOUR HOUSEHOLD!
We call upon everyone with HAE, and all members of their household (whether or not they have HAE) to complete an important, brief, anonymous survey. The data we collect is urgently needed because it could guide treatment decisions for people with HAE. We can ONLY answer the questions raised above if ALL household members, including those without HAE, fill out the survey. Comparing household members without HAE to people with the condition ensures a clear understanding of differences in COVID-19 incidence and severity. We will share the study findings with the HAEA and scientific communities when the research is completed. The survey is anonymous, and you cannot be connected to the information you provide.
We greatly appreciate your participation.
The HAEA actively promotes research that leads to more effective medicines, better clinical care, and enhanced quality of life for all affected by HAE. The HAE community has worked hard to win access to a variety of HAE therapies, but there is still much more to be done.
How can you pave the path for future generations? Join the US HAEA’s Research Registry and provide researchers with the biosamples and information needed to conduct critical research necessary to unlock the remaining mysteries of HAE, and find innovative therapies and potential cures.
Who can join? Anyone with HAE or anyone who has a blood relative with HAE.
Already a member? Thank you for being part of this very important cause! Be sure to fill out your Quarterly Reports and ensure your Attack Reports are updated because this information is vital to ongoing research!
Did you know? HAEA friends who are prescribed the HAE medicine Ruconest can join the US HAEA Scientific Registry and participate in the Ruconest Safety Registry. Joining will help fulfill a regulatory requirement for information on attacks treated with Ruconest.
Advance HAE App - Download the FREE Advance HAE App today from the Apple App Store!
The Advance HAE mobile app makes it quick and easy to create your own personal record of life with HAE, storing all of the information on your HAE attacks and your HAE therapy/therapies. The app also allows you to create personalized, user-friendly graphs of the data you enter.
We invite you to download and listen to HAE Speaks, a podcast exclusively created for the HAE community. The podcast series tells the stories and life experiences of individuals affected by HAE, and focuses on relevant topics, explained simply through friendly and open conversations. Make HAE Speaks a regular addition to your podcast playlist and listen today on your favorite platform!
Episode 6: Linda P. provides insight into her HAE journey and tips about creating HAE awareness.
Do you have a topic, question, or idea you would like us to cover? Send your suggestions to firstname.lastname@example.org.
The HAEA is always looking for creative ways to serve our patient community. We recently learned about The Children’s Music Fund, a non-profit organization that provides children affected by chronic health conditions with musical therapy programs.
Please complete the survey linked below and let us know your level of interest in Music Therapy!
Every month throughout 2020, we spotlight a different patient and their unique HAE story. This month we are spotlighting Beth. We hope you enjoy the following story during the month of October.
“My name is Beth and I am from Lake Elsinore, CA. Living with HAE does not define who I am and I live a full life.
Access to the "new" medications have changed my life for the better. I no longer have to take Steroids (Winstrol) and Androgens (Danazol) and do not receive any Fresh Frozen Plasma (FFP) anymore. These new medications allow me to be the best I can be and I have discovered a new passion for traveling.
Imagine the possibilities means to me that the ‘sky's the limit’ and HAE will never stop me from being who I am.”
The HAEA is working to make sure that kids with HAE and their siblings are supported to the fullest as they learn what it means to have HAE or have a family member with the disease. The Brady Club provides kids with a fun outlet where they can learn about HAE, complete interactive activities, and read about other kids in the Brady Club. Joining is FREE, and once registered, kids will receive a cool t-shirt and benefit from exciting membership perks!
Some of the Brady Club membership perks include:
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.
Email Lisa Facciolla at email@example.com to request a kit for your child.
Twice a year, the HAEA welcomes a group of youth and young adult interns who will be responsible for creating and designing content for the @HAEAYouth Instagram page. We are excited to welcome 8 new interns who, over the next six months, will learn about:
If you are interested in becoming an HAEA Social Media Intern, please contact Lisa Facciolla at firstname.lastname@example.org.
The second book in the HAEA’s Children’s Book Series, Nico’s Surprise, is now available!
If your family enjoyed reading Nico’s Lunchbox, you’ll LOVE Nico’s Surprise. The second book in the series follows Nico as he embarks on an unexpected adventure with his family to a lake house for their summer vacation, and is surprised when someone special knocks on the door.
BONUS! When you order a copy of any of the books in the HAEA Children’s Book Series, we will include a FREE activity guide to complement the book. Your kids will enjoy hours of fun as they go through the various activities!
For more information or questions, please contact Lisa Facciolla at email@example.com.
The #BeyondHAE podcast series strives to amplify the voices of young patients and caregivers who share their personal challenges, triumphs, and lessons learned over the years.
#BeyondHAE Podcast: Episode 18 is hosted by Gabriela from California. Gabriela shares her personal HAE story and talks about how art has helped her get through difficult times.
#BeyondHAE Podcast: Episode 19 is hosted by 10 year old Ava from California. Ava talks about the impact that stress has on her HAE attacks. She shares some strategies that she's learned over the years to cope with stress.
Message from BioCryst
APeX-S, a study of an investigational oral medication for preventing HAE attacks in patients 12 and older, has over 40 active trial sites across the US. BioCryst recently announced a clinical trial protocol change that allows physicians to request access to this investigational medicine on behalf of people with HAE who do not have access to the product through a clinical trial.
Message from Takeda
Takeda lifted the COVID-19 screening hold for the SHP643-303 BMA Study, and is now recruiting for the clinical trial. Individual sites will comply with state and local guidelines and safety protocols for bringing patients into clinics. There are now 8 clinical trial sites actively enrolling with additional sites being activated soon.
If you have HAE type 1 or 2 or HAE with Normal C1, and are interested in learning about new clinical studies to prevent attacks, please contact John Williamson at firstname.lastname@example.org to see if there will be an active clinical trial site in your area.
We are so grateful to the over 500 participants who joined us, both individually and as teams, for the 2020 HAE IN-MOTION® Virtual Challenge! This exciting event brought together the HAE community in logging over 28,000 miles and raising over $10,000 for HAE Awareness!
Funds raised will go towards expanding the HAEA’s patient services and programs, improving HAE education and awareness, and increasing HAE research! Every step counts, and we thank you for the overwhelming participation and support of our community!
A special thank you to our event sponsors, whose support and enthusiasm made these events possible:
Check out all the photos from the 2020 HAE IN-MOTION® Virtual Challenge regions here:
If you have any questions on the 2020 HAE IN-MOTION® Virtual Challenge, please contact Mike Mallory at email@example.com.
Plan a fun night to meet other HAEA members from your community! The HAEA Virtual Meet and Greet Events are a perfect way to reach out and meet other people affected with HAE and their families in your area. If you are interested in participating in an HAEA Virtual Meet and Greet and connecting with people close by, please check out the HAEA Events Calendar, or reach out to Mike Mallory at firstname.lastname@example.org.
What would you tell someone who is considering attending a future HAEA Meet & Greet?
“That even if they’ve had HAE for a long time and have been a member of the HAEA, they will learn something new and reconnect with people they haven’t seen for a while.” - Dawn W.
UPCOMING HAEA VIRTUAL MEET & GREET EVENTS
Upstate, NY HAEA Virtual Meet & Greet
Tuesday, October 6, 2020, 6:30 PM EDT
Nevada HAEA Virtual Meet & Greet
Tuesday, October 20, 2020, 6:30 PM PDT
Pennsylvania HAEA Virtual Meet & Greet
Thursday, October 29, 2020, 6:30 PM EDT
Kansas City HAEA Virtual Meet & Greet
Tuesday, November 17, 2020, 6:30 PM CDT
Participants will receive an HAEA gift bag after the event!
For more information, please contact HAEA Patient Advocate, Mike Mallory at email@example.com or (513) 858-9370.
Link Webinar: https://haea.zoom.us/j/95894554216
Phone Number: +1 646 558 8656 (Webinar ID: 958 9455 4216)