HAEA in Action June 2020 Newsletter HAE day

HAEA Community Steps Up For HAE Day :-)

During the entire month of May, we celebrated hae day :-) by raising awareness through the Stepping Forward Together Virtual Walk.

This exciting event brought together 280 participants who joined the HAE community in logging over 15,000 miles for HAE Awareness!

We are thankful to all those who joined us, both individually and as teams! 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!

Check Out All The Amazing Photos From Our Virtual Walk Participants Here!

Important Survey

Attention HAE Patients:

The US Hereditary Angioedema Association (HAEA) is offering you the opportunity to participate in an important study that will help us understand insurance coverage of HAE medicines in the United States, and any unique problems faced by the US HAE community.

We will use this information to 1) identify patterns in insurance denials, and 2) develop strategies and education materials that the community and prescribing physicians can use to overcome insurance coverage obstacles. Your responses will also inform our insurance company outreach activities designed to educate insurers on the HAE disease burden and demonstrate the value of HAE medicines.

We value the investment of your time in this vitally important research that will help us better understand:

  •HAE medication coverage issues during the COVID-19 pandemic
  •HAE medicine coverage barriers such as denials and/or quantity limits barriers

Your answers are anonymous, and you can never be connected to the information you provide. Completing the survey will take approximately 30 minutes.

The survey is open until June 15, 2020.

Thank you for participating in this extremely important HAEA research project.

To Complete This Important Survey Please Click Here!

Member ID Card

Request the NEW US HAEA Member ID Card

Don't Leave Home Without It!

The US HAEA Member ID card is a valuable tool that ensures important information about your health and HAE needs are readily available in case of an emergency. The Member ID card includes information on your prescribed medication, contact information for your treating physician, and your family emergency contact.

US HAEA Member ID cards are available free 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!

Fill out the online form for your New US HAEA Member ID Card Here!

HAE Health June Update

HAE Health Update

Practice Self-care This Summer Amid The COVID-19 Outbreak

Life is unpredictable. Just a few months ago, we were immersed in our daily routines, when suddenly our lives were transformed by the global COVID-19 outbreak.

Now that we have adjusted to some of the new 'normal' routines in our communities, we are beginning to experience more challenges as businesses and communities reopen. During times like this, it is completely normal to feel some level of stress.

While it might seem like much is out of your control, there are some things you can do to navigate the changes with composure, and it all starts from within. By focusing your efforts on being mentally and physically strong, you'll be better prepared to tackle any challenges and changes ahead.

Refocus Your Thoughts

Many things about coronavirus are simply out of our control. This doesn't have to make you feel out of control on the inside. Be mindful of the need to refocus your thoughts on what you can control right now, including your emotional health.

Ease your mind with activities such as visualization, deep breathing, walking, stretching, meditation, or listening to uplifting music to shift your mind and body toward positivity.

Connect with Your Loved Ones

It is easy to get caught up in the daily grind of life. Sometimes a major event makes us stop and shift our perspective. Even if your local community hasn't reopened enough to make you feel comfortable traveling or visiting in-person with others, take time to virtually connect with family and friends. Show your support for one another and talk about your thoughts and feelings by phone, video chat, or socially distant patio get-togethers.

Nourish Your Body

One thing you can control is the nutrition you provide your body. During stressful times, be mindful that your body will benefit from power-boosting nutrients. Stay hydrated by drinking a lot of water, and eating healthy foods that nourish your body and mind.

Boost Your Physical Strength

Exercise helps manage nervous energy. Get out in the fresh air for a walk, jog, bike ride, or do some gardening. Activity boosts blood flow to the brain, reduces stress hormones, and more importantly, it releases endorphin - the ('happy' hormones) that help us feel mentally healthy. These activities also make you physically stronger which help improve your resilience to illnesses around you.

Get Your Rest

When our mind is racing, it can be difficult to sleep. Take time to develop an evening routine that helps prepare your mind and body for bed. A good night's sleep can help you feel your best the next day, allowing you to be focused and decisive when tackling challenges ahead.

Reach out to the US HAEA Health Advocates at 866-798-5598. We are here for you whether you: need assistance with insurance issues, finding an HAE expert physician, need to update your member information, want to join a support group, or just have a question to ask. HAEA Patient Health Advocates are here for you!

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 2: HAE patients and caregivers share their thoughts about COVID-19. Listen as they share tips for dealing with the daily stress, keeping the family occupied, and first hand experiences living in New York City during the pandemic.

Coming Soon!

Episode 3: US HAEA President Tony Castaldo provides an overview of HAE therapies under development.

Do you have a topic, question, or idea you would like us to cover?  Send your suggestions to Mike Mallory at mikemallory@haea.org

CLICK HERE to listen to episode two of the Podcast!

Swell Photos

Give Back With Your Swell Photos

Would you like to help someone know if they have HAE? A picture of HAE swelling is the best way to alert physicians to test for the possibility of HAE, and help patients avoid years of needless suffering.

Do you have photos of yourself during an HAE attack? The HAE maintains a library of images that illustrate what a swelling attack looks like. The photos are part of the educational materials we provide to physicians and other medical professionals.

Please send your high-resolution photos to ianiceviel@haea.org. Then, click on the link below to complete the consent form, allowing us to use your photos for HAE education.

Fill Out The Consent Form Here!

Coloring Contest

#BeyondHAE Kids Coloring Contest

The US Hereditary Angioedema Association invites children ages 14 and under who either have HAE or love someone who does, to participate in our #BeyondHAE Coloring Contest! The contest will be held from June 1 through June 25, and participants will receive fun, summer goodies. Interested families should ask the child to create a picture that illustrates what life #BeyondHAE looks like to them, and then send us a good quality photo of the artwork. All entries will be reviewed by a panel of judges, and three winning entries will be chosen. The winning entries will be printed in upcoming Brady Club Activity Books, and may be printed and used for future HAEA communications.

Bonus! All children who submit their art for the contest will receive an inflatable HAEA beach ball to enjoy during the summer.

To get started:
1. Have your child create a picture (hand-drawn or digital).
2. Download and complete the PDF entry form and email it along with a JPEG photo of the artwork, and a photo of your child, preferably as he/she creates the artwork.
3. Complete the image consent form.

Winners will be announced in July, and each winner will be notified via email. One entry per child, please.

Ready?   Set.... Create!

June  Legislative Update

Legislative Update

In Washington, DC, legislative activity on healthcare is ramping up while Congress acts on multiple COVID-19 relief packages. Some provisions of these relief packages will have short and long term implications on how we access healthcare.

Possible changes to 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.

H.R. 2279, known as “The Safe Step Act”, 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.

The US HAEA is closely monitoring the impact of these legislative actions on the HAE community and will continue to provide updates.

If you are interested in supporting step therapy reform, or to join the HAEA’s grassroots advocacy efforts, please contact John Williamson at john@haea.org.

HAEA Youth Legislative Advocacy Training Program

HAEA Youth Legislative Advocacy Training Program

The US HAEA is empowering the next generation of HAE advocates through our HAEA Youth Legislative Training program. In six simple and easy-to-follow online lessons, young advocates will gain the knowledge and tools to become effective HAE Heroes. The lessons guide youth through the process of identifying key policymakers, legislative priorities for the HAE community, and culminate with coaching on drafting and delivering an elevator pitch for visits with lawmakers.

For a limited time, we are offering youth advocates between the ages of 8 and 25 a $20 VISA gift card and a certificate of completion for submitting all 6 Legislative Training Activities. To qualify for the VISA Gift Card, all 6 activities must be submitted by July 1.

Click the links below to access the Legislative Training Activities, each activity has a corresponding jotform that you must submit to complete the activity.

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

Activity 5: Select Your Cause

Activity 6: Crafting an Effective Elevator Pitch

Virtual Global Conference

2020 HAE Virtual Global Conference

While COVID-19 prevented us from meeting in-person, the “can-do” spirit of the HAE global community inspired the transformation of this highly anticipated bi-annual conference into an exciting virtual event.

If you were unable to attend the virtual event, we invite you to visit the HAE Virtual Global Conference website, where you can find educational videos from HAE expert physicians, messages from the Regional Patient Advocates, Pharma Exhibits, Youngsters activities, and more.

Watch The 2020 HAE Virtual Global Conference Here!

Together Apart

HAEi Together Apart

The US HAEA has collaborated with the HAE International Youngsters Community to create a virtual space where HAE affected youth and young adults can share their photos, personal HAE stories, and words of encouragement with our growing global community. The #TogetherApart project is all about expanding our community and sharing our hopes for the future. We invite youth and young adults between the ages of 12 and 25 to share their HAE story on this virtual platform. Creating your story will only take a few minutes of your time, but it will have a long lasting impact on our growing community.

Let’s be #TogetherApart!

Click Here To Watch

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

If your young child has experienced an HAE attack recently and could use a little encouragement, the HAE Attack Support Kit can deliver joy and put a smile on his or her face. All HAE Attack Support Kits are specially crafted with the special needs or interests of your child.

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 lisa@haea.org with your mailing address, plus a little information about your child. We will send something special directly to your child in the mail.

#BeyondHAE Podcast
#BeyondHAE Podcast - June's Episode

The HAEA Youth Podcast Producers have been hard at work over the last couple of weeks and have 3 new podcast episodes now available on our channel!

In episode 9 Jasmeen talks about her experience navigating friendships as she opened up about her HAE.

Episode 10 is hosted by Carlie as she talks about her relationship with her mom, who also has HAE, and how they have supported each other over the years.

Bonus Episode! This month we are releasing a special bonus episode in collaboration with the HAEi Youngsters Community. This roundtable discussion is all about the impact that COVID-19 (Coronavirus) has had on the lives of young people with HAE around the world. Listen to young adults living in South Africa, Greece, and the US as they reflect on how their lives have been impacted by this unprecedented international crisis.

Listen to the Podcast here!

Patient Spotlight - Richard
Patient Spotlight

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

"My name is Richard and I live in Warwick, RI, with my wife Sue and two daughters, Natalie and Lauren. Living with HAE has certainly been a lifelong struggle. I am using prophylactic medication now once every two weeks and acute treatment for breakthrough attacks.

I was diagnosed at age 18 when I had my first known swelling and both arms looked like Popeye’s. I went to Boston Children’s Hospital and was attended by Dr. Rosen, who was among the first doctors to work on developing clinical trials for C1-INH therapy. I had to arrive within 4 hours of a major attack and spent long hours getting bloodwork to finally get an infusion, of which some were placebo. Today, I am participating in another study. I am grateful for all the work HAE association and representatives have done for us.

Having access to the medication has changed my life. Now, I hardly get an attack and it has been years since I have had to go to the hospital. I am able to infuse myself and require no office trips."

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 40 active trial sites across the US with more sites continually coming on board including new sites in Colorado and Arkansas. 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 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.

Summer Virtual Meet and Greet Events

Summer Virtual Meet & Greet Events

There are many ways to stay connected during the COVID-19 outbreak! The HAEA Virtual Meet and Greet Events are a perfect venue to reach out and meet with fellow HAE families. Last month, we held a fun event for the community in New Mexico. Next up, we are hosting events for the Inland Northwest area and Nashville, Tennessee. 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 these events, you and your family members or caregiver can:

Upcoming HAEA Virtual Meet & Greet Events

Wednesday, June 3rd: HAEA Virtual Meet & Greet Inland Northwest - 6:00 PM P.T.
Please join us for team jersey night!

Register Here

Wednesday, June 17th: HAEA Virtual Meet & Greet Nashville Neighbors - 6:00 PM C.T.
Please join us and share your favorite recipe!

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.

Treatment Education Series Webinar

Webinar Link: https://haea.zoom.us/j/91976449687  
Phone: (646) 558-8656 (Webinar ID: 919 7644 9687)

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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