COVID-19 may be disrupting our daily lives, but it will not derail our mission to raise HAE awareness. Taking into consideration social distancing guidelines and the health and safety of our community, this year we have opted to move forward with the HAE IN-MOTION® events virtually. We are hopeful that next year, we will be able to retake our in-person HAE IN-MOTION® events, but for now, we invite you to join us in keeping healthy and active while raising HAE awareness and funds through our Virtual Challenge.
Four simultaneous events will take place across the country and will run through September 30, 2020. These four events will not only reach the individual cities of the original events, but encompass the entire United States. The events will be divided into four regions: Northeast, Western, Central, Midwest & Puerto Rico. To keep things exciting, the regions will go head to head with weekly challenges, and individuals will have the opportunity to win prizes! All participants will receive a race shirt, finisher medal, and race bag full of goodies!
ALL funds raised will go towards expanding the HAEA’s patient services and programs, improve HAE education and awareness, and increase HAE research! Every step counts, and we thank you for the overwhelming participation and support of our community! With your help, we can reach our goal to log 10,000 miles for HAE awareness. Sign up today and register all of your steps!
Stay active. Stay healthy. Advocate.
If you have any questions on the 2020 HAE IN-MOTION® Virtual Challenge, please contact Mike Mallory at firstname.lastname@example.org.
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 using the HAE medicine Ruconest can join the US HAEA Scientific Registry and participate in the Ruconest Safety Registry. Doing so will help fulfill a regulatory requirement for information on attacks treated with Ruconest.
Advance HAE App
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.
Download the Advance HAE app today from the Apple App Store!
If you would like more information on the US HAEA Scientific Registry or the Ruconest Safety Registry, please contact Sherry Swanson at email@example.com.
The HAEA has partnered with the US HAEA Angioedema Center at UC San Diego to conduct an important survey on the interaction of HAE and COVID-19. The survey seeks to determine whether people with HAE are more vulnerable to the virus. It also evaluates if HAE or HAE therapies affect the duration and/or severity of a COVID-19 infection.
Participation in this study is voluntary and your answers will be anonymous. You cannot be connected to the information you provide. Completing the survey will take approximately 10 minutes per person, and you can take it on a computer, tablet, or smartphone.
The Health Insurance Open Enrollment period is coming soon and the HAEA Health Team can help guide you through the process! The time is now to research the options available to you so that you are able to: (1) select the plan that provides you better coverage and alternatives, and (2) identify the insurance options available, and determine whether they are suitable for your needs, particularly with respect to coverage and costs.
Make sure to compare and ask questions about the different options available including ACA/Marketplace choices. You should also consult with your Human Resources Department to learn more about employer-sponsored plans.
For people nearing, or age 65 and older, make sure to review available benefits and coverage for your HAE therapies under Medicare/Medicare Advantage plans. For individuals who are already on Medicare, open enrollment provides an opportunity to look at alternatives if you are unhappy with your current plan. Make sure to research your options ahead of time to ensure that you meet the open enrollment deadline and can select the best coverage. It is important to note that if you miss the deadline, you risk having no insurance for the entire year, affecting your access to healthcare and HAE therapies.
For more information visit the following websites:
The HAEA Health Team is available to assist you. Contact us for a consultation or with any questions regarding insurance coverage of HAE therapies, and other important aspects of your healthcare plan at (866) 798-5598._
Are You Dealing with Insurance Denials and Appeals?
Health insurers often put up obstacles that delay or block access to and reimbursement for the incredibly effective HAE medicines that our community has worked so hard to get approved. Our experienced and committed HAEA Health Team is ready to assist you with any insurance related challenges you may be experiencing including: (1) providing support and guidance to fight insurance denials or limits to the quantity of your prescribed medicine, (2) working with you and your physician to secure a prior authorization, and (3) assisting with reimbursement problems.
Do you need an HAEA Physician Referral?
If you’re an undiagnosed HAE patient, planning to move to another city, or want a second opinion, the HAEA Patient Advocates can help you find the right HAE physician expert in your area.
HAE experienced physicians are key to an accurate diagnosis and obtaining access to HAE therapy. The HAEA provides referrals to its robust network of HAE knowledgeable physicians. Our referral service assists in identifying a physician in close proximity to the patient or to any of the HAEA’s Medical Advisory Board Members. For interested patients, we can also provide a referral for an appointment with experts at our US HAEA Angioedema Center at UCSD. The physicians at the US HAEA Angioedema Center at UCSD are a great resource for you and your local healthcare team to get the diagnosis and treatment plan that works best for you.
Reach out to the US HAEA Health Advocates at 866-798-5598. Whether you need assistance with: insurance issues, finding an HAE expert physician, need to update your member information, want to join a virtual support group , or just have an HAE related question to ask, HAEA Patient Health Advocates are here for you!
Congress is currently considering legislation on Step Therapy. Step therapy policies are of particular interest to the HAEA. Step therapy, also known as “failfirst,” is a process that often means patients are forced to try and fail medications chosen by their insurer before they are able to receive the treatment originally prescribed by their healthcare provider. Sometimes, step therapy protocols can cause unnecessary delays in care, or worse, require patients to try ineffective or potentially dangerous medications before finding the treatment most suited to their needs. They can also require multiple and unnecessary visits to a healthcare provider.
Known as “The Safe Step Act”, H.R. 2279 is a bipartisan bill to improve step therapy protocols and ensure that patients are able to safely and efficiently access the best treatment for them. Now more than ever, vulnerable patients must be protected from this practice when appropriate. Through H.R. 2279, lawmakers have an opportunity to protect patients and reform step therapy as they draft upcoming COVID-19 relief legislation.
It should be noted that step therapy reform must be tackled at both the state and federal levels, since they regulate different types of health insurance. State step therapy laws can impact individual health plans (ACA Marketplace), Medicaid, and state employee plans while the Safe Step Act would impact people with insurance through their employer. If a state has passed step therapy protections, people with employer insurance will not be protected until the federal government passes the Safe Step Act.
If you are interested in supporting H.R. 2279 -“The Safe Step Act”, or the HAEA’s grassroots advocacy efforts, please contact John Williamson at firstname.lastname@example.org.
We are pleased to announce that Ianice Viel is part of the HAEA Health Team, and she speaks fluent Spanish. Ianice will support our HAE Spanish speaking community by assisting with physician referrals, peer-to-peer support, guidance on access, and reimbursement for your HAE medicines, while also sharing the latest news and HAE materials in Spanish, and more.
For assistance with your HAE questions or needs in Spanish, you can contact Ianice Viel at email@example.com or (866) 798-5598.
Para asistencia con sus preguntas o necesidades, puede comunicarse con Ianice Viel a firstname.lastname@example.org o a través del número de teléfono libre costo (866) 798-5598. También, puede acceder a nuestra página de internet www.haea.org y oprimir el icono de español para aprender más sobre nuestros distintos servicios.
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 5: Michael G. shares his road to treatment and overcoming his fear of needles.
Do you have a topic, question, or idea you would like us to cover? Send your suggestions to email@example.com.
Every month throughout 2020, we will spotlight a different patient and their unique HAE story. This month we are spotlighting Ashna. We hope you enjoy the following story during the month of September.
“When I was diagnosed with Hereditary Angioedema (HAE) I was nervous and worried about how my lifestyle would be affected. There were challenges; however, they never stopped me from playing sports or negatively affected me. It was difficult to tell people that I had a disease because I thought they would start to look at me in a different way. I learned that I was wrong, as it was rather easy telling those I was close to. The challenges I faced were easy to overcome due to all the support from my community, and I am very grateful for that.
The process of obtaining treatment for HAE was tough. My family went through a hard time figuring out what treatment was best and battling with the insurance company. I wanted to have a simple treatment, such as taking a pill every day, but that wasn’t an option. I was scared and worried about self-administering another medication. My current medication has been working very well. It was hard for me to get used to administering the medication frequently but over time I overcame my initial fear. I still hope that new treatments do surface and will have easier methods of administering.”
Spring 2021 Scholarship Applications are now open!
The HAEA helps students with a confirmed HAE diagnosis pursue their academic goals by reducing the financial burden associated with higher education. Applications for the Pam King HAEA Scholarship Program are open twice a year, so please take advantage of this opportunity, and complete your application before September 30.
Is your child a member of the Brady Club? Brady Club kids get cool perks including access to our virtual learning platform, quarterly activity books sent to them in the mail, collectible stickers, and invitations to join other Brady Club kids for virtual events. The Brady Club is a great resource for kids who are learning to cope with their HAE.
Once a member, we invite parents to work with their child to share a “superhero” story with our online community. We will then feature their story in an upcoming edition of the Brady Club Activity Book and send them a FREE Super Hero t-shirt in the mail.
Sign up today to get your activity book in the mail and as a bonus, your child will receive a collectible Brady Club sticker!
The second book in the Nico’s Children’s Book Series, Nico’s Surprise, is now available!
The HAEA and Brady Club will host a “Virtual Book Launch Party by the Campfire” with a reading of Nico’s Surprise, read by the author, Caryn Sonberg Seiler. We invite you and your family to join us for this special virtual event on Friday, September 18th at 7:30 PM EDT.
Families who attend will receive one FREE* copy of Nico’s Surprise signed by the author to add to their collection. Don’t miss this great opportunity to bring our kids together while we are apart!
For more information or questions, please contact firstname.lastname@example.org.
One free book per household
To register, please click here.
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: My HAE Story from Diagnosis to Advocacy
Episode 16 is hosted by Youth Leadership Council member and HAEA Social Media Intern, Maddie. In this episode, Maddie shares her HAE journey, from her diagnosis and many hospital visits, to becoming part of the HAEA Youth community and advocating for the HAE community on Capitol Hill.
#BeyondHAE Podcast: Being Different Is Normal
Episode 17 is hosted by Kobe from Georgia. Kobe asks the question: what does it mean to be normal? As a young person with a chronic disease, many of us understand that we are a little different from our peers. As Kobe describes in this episode, being different is actually more normal than many of us realize.
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 with more sites continually coming on board, including new ones in California and Kansas. 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!
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 email@example.com to see if there will be an active clinical trial site in your area.
Plan a fun night to meet other HAEA members of 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 connect with people close by, please check out the HAEA Events Calendar, or reach out to Mike Mallory at firstname.lastname@example.org.
“I had many questions answered just within the segments of the presentation. The leaders were warm and welcoming. I look forward to becoming more involved with the organization as a caregiver/advocate. What a blessing this organization is for individuals and families struggling with the ongoing issues of this disorder! I feel hopeful and empowered!” - Sue K.
UPCOMING HAEA VIRTUAL MEET & GREET EVENTS
HAEA Virtual Meet & Greet Chicago
Join us on September 8th at 6:30 PM CDT to meet patients and caregivers in the Chicago area and learn more about HAEA programs and resources available to you.
HAEA Virtual Meet & Greet Colorado
Join us on September 22nd at 6:30 PM MDT to meet patients and caregivers in the Colorado area and learn more about HAEA programs and resources available to you.
HAEA Virtual Meet & Greet Upstate New York
Join us on October 6th at 6:30 PM EDT to meet patients and caregivers in upstate New York and learn more about HAEA programs and resources available to you.
Participants will receive an HAEA Goodie 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/96345330784
Phone Number: +1 646 558 8656 (Webinar ID: 963 4533 0784)