Dear HAEA friends,
The HAEA cares deeply about the wonderful people in our community, so please accept my sincere hope that you and your families are remaining healthy and safe during this unprecedented COVID-19 Coronavirus pandemic. These are challenging times as the number of infected Americans increases and our social distancing measures are extended to April 30th. In the midst of all that is happening, please know that you are not alone and that the HAEA is here for you. Our HAEA team will continue working tirelessly to keep you informed on important HAE-related issues that may come up as our governments and health care systems fight the pandemic.
In the days and weeks ahead, we will continue to offer relevant, trustworthy information on how to stay physically and mentally healthy. I encourage you to take some time and watch our recent webinar where expert HAE physician Dr. Marc Riedl provides an overview of COVID-19 and HAE, and answers participant's questions. We are also hosting a webinar on COVID-19 and Staying Healthy Mentally on April 9th which should provide you with practical tips to stay positive and active during these unusual times. You can stay up to date on the latest Congressional action regarding COVID-19 relief through our Legislative Updates.
Let me emphasize that our HAEA Health Advocates are always available to answer any questions, provide information, or just lend you an ear to share your concerns.
We are in this together! Please stay healthy and safe.
US HAEA President & CEO
The HAEA asked expert HAE specialist Dr. Marc Riedl to answer the following important question regarding HAE and COVID-19 (the Coronavirus):
"Does having HAE increase the risk of either (1) contracting the Coronavirus, or (2) having more complications or a more severe case if infected?"
Dr. Riedl: At this time, we have no specific research or data regarding Coronavirus and HAE. Based on our understanding of HAE, it is currently thought that HAE or the HAE-specific medications used to treat the condition should not cause:
1. Increased susceptibility to getting Coronavirus infection
2. Increased severity of infection if the virus is contracted.
We know that infections of any type may be a trigger for HAE attacks in some people. For this reason, it is important to make sure HAE medications are taken as prescribed and to keep prescriptions current. It is also vital that each person consider other non-HAE health conditions that may be specific risk factors of Coronavirus and to follow ALL instructions from governmental and local health authorities. Contact your HAE physician if you have specific questions.
US HAEA In-person Events Temporarily Postponed
Out of an abundance of caution and an overriding duty to protect our patient community, the US HAEA has decided that, until further notice, we will postpone and reschedule all of our public events for a later date. We will continue to monitor information and recommendations coming from the Centers for Disease Control (CDC). For the latest on the coronavirus, and to find a list of frequently asked questions visit: https://www.cdc.gov/coronavirus/2019-ncov/index.html.
HAEA Health - April Tips!
The HAEA Team understands that news about the COVID-19 outbreak may elevate our levels of anxiety. Because your mental health is our priority, we invite you to attend our webinar: COVID-19 and Staying Mentally Healthy, on Thursday, April 9th at 7:00 PM EST, 4:00 PM PST, where we will provide you with practical tips on how to stay positive, cheerful and active through this crisis.
Staying Mentally Healthy in Stressful Times
Limiting your stress can go a long way in keeping you healthy. Here are a few tips to help alleviate anxiety:
Finally, we encourage you to:
- Practice Everyday Healthy Habits
- Ground Yourself when Feeling Anxious or Overwhelmed
- Connect with Others (Virtual Visits)
- Get Outside and Connect with Nature (respecting CDC social distance guidelines)
- Maintain a Sense of Hope
- Avoid Excessive Exposure to Media Coverage
Our HAEA Health Advocates can help you find an HAE expert physician near you. Please reach out to an HAEA Health Advocate at (866) 798-5598.
During this Coronavirus pandemic, Congress has been acting urgently to address this national health crisis by invoking emergency spending measures and policies geared toward helping families and businesses. While the HAEA has recently supported multiple action letters in support of funding for the CDC, protections for plasma donations, and charitable assistance programs, we continue to closely monitor the discussions taking place in Washington, DC that may impact the HAE patient community.
Following are some key health-related items included in the emergency legislative packages:
Furthermore, the US HAEA continues to lead the fight in defense of the charitable assistance programs to make sure that members of our patient community have uninterrupted access to life-saving therapies. If you or a family member are having issues with your insurance accepting payment from any third party charitable assistance organization, please reach out to John Williamson directly at email@example.com.
- Additional federal spending for federal, state & local agencies, health care entities and academic institutions to manage and respond to the impact of the pandemic
- Enhanced guidance and coverage for COVID-19 testing
- Regulatory relief for the development and approval of CV vaccines, treatments and diagnostics
- Support for medical research and public health response initiatives
- Military spending for personal protective equipment, and other efforts to maintain medical services & readiness
- Expanded coverage options for individuals seeking medical attention and/or treatments, including telehealth and home health
- Reauthorization and/or extension of existing federal programs that relate to the provision of care or the availability of health care providers
- A series of provisions designed to support non-profit organizations, including enhanced deductions for charitable giving, unemployment relief, and loans converted to grants from the Small Business Administration.
To find out more, or to join the HAEA's grassroot advocacy efforts, please contact John Williamson at firstname.lastname@example.org.
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 safely continuing study activities, including providing 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 are interested in learning about new clinical studies, please contact John Williamson at email@example.com.
Nico's Lunchbox Goes Digital!
Nico's Lunchbox audiobooks are now available! The book is narrated in English by the author, Caryn Sonberg Seiler, and in Spanish, by HAEA Patient Advocate, Ianice Viel. Look for them in English and Spanish on the US HAEA YouTube channel or click below.
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 pulling out that project you've been wanting to do? 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:
- Post a photo or video of yourself doing something fun at home
- Use the Hashtag #BeyondHAE in your post
- If posting on Instagram, tag @haeayouth
- Make sure to include the #BeyondHAE logo somewhere in the photo or video on Facebook, Instagram, and TikTok. (make sure that the words #BeyondHAE are clear and easy to read in your photo)
- To download the digital version of the #BeyondHAE logo to use in your social media or video post, click here.
- To get a #BeyondHAE sticker by mail, you can order one on-line here.
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. Limit 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 firstname.lastname@example.org with your mailing address, plus a little information about your child. We will send something special directly to them in the mail.
Pam King HAEA Scholarship Program
The application period for the Fall 2020 Semester Pam King HAEA Scholarship Program is now closed. Thank you to everyone who applied. We look forward to announcing the awards on May 1st, 2020.
#BeyondHAE Podcast - April's Episode
Each month we release a new episode of the #BeyondHAE podcast that is led by a different youth host from the HAE community. The episodes cover a variety of topics from overcoming challenges, building strong support systems, sharing the perspective of a sibling who doesn't have HAE and more!
We hope that you and your family find comfort and inspiration from tuning in to our monthly episodes.
April's episode is hosted by Stephen, from Ohio. Stephen's dad and his little sister Abby both have HAE; and although Abby has yet to have her first attack, Stephen has realized that he can help her have a brighter future by participating in HAE advocacy. In this episode of the #BeyondHAE podcast, Stephen talks about a few of the fun ways that he raises awareness about HAE and how he has become a proud HAE advocate.
Every month throughout 2020, we will spotlight a different patient and their unique HAE story. This month we are spotlighting Red Heis. We hope you enjoy following his story during the month of April.
"My name is Elmer "RED" Heis. Born and raised in Cincinnati, Ohio, and currently living in north Alabama in Tuscumbia, after living all over our great country for several years. Hereditary Angioedema (HAE) is a part of who I am. I will continue to do my part to help find treatment and a possible cure for this condition.
At age 13, I had my first attack, which was about 60 years ago. It was a stomach attack and at first, we blamed it on some fish I ate at school. Not until a couple of months later when I had a second attack did my mother figure out what it really was. She didn't want to believe it but she knew for sure because she had it all her life. Her mother, my grandmother, died from swelling in her throat many years before in 1929. At that time, it was referred to as John-a-hives. My mother has several brothers and sisters who also have this same condition. Many of my cousins have it today. I have 8 brothers and sisters of which all but 2 have this condition. Meanwhile, I have 3 children of which one has it and he has 3 children of his own and two of them have it.
With research studies, it means we have a greater chance to defeat this - knowing how far we have come in 10 years."
Webinar Link: https://haea.zoom.us/j/994427878
Phone: (646) 558-8656 (Webinar ID: 994 427 878)
Webinar Link: https://haea.zoom.us/j/167869226
Phone: (646) 558-8656 (Webinar ID: 167 869 226)
Webinar Link: https://haea.zoom.us/j/978085932
Phone: (646) 558-8656 (Webinar ID: 978 085 932)
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.