Fall 2010

A Message From Your US HAEA President

Dear HAEA friends -
I have always considered the change in seasons to be a fitting time for serious reflection on what has transpired and what can yet be done to accomplish more. I am happy to report that the US HAEA has been very busy, continually searching for ways to help each and every HAE friend lead a normal life. I thank those who have signed up to become members of the HAEA – there is strength in numbers and every member in our 7,000 person strong movement counts! The HAEA staff is passionate about being there for every HAE friend who needs our services, conducting our day to day interactions with empathy and kindness.

Our Patient Services team works around the clock to provide caring and individualized assistance. As you know, each Patient Services Representative either suffers from HAE or serves as the primary caregiver for a severely affected family member. As a result, we have great insight into the problems you may face and we have an unflagging zeal to help in any way possible.

Your Representative is ready to 1) help you with an HAE-related emergency, (2) answer questions about insurance reimbursement for current HAE medications, and (3) provide a referral to an HAE-knowledgeable physician in your area. Also, be sure to contact your Patient Services Representative to obtain all the information needed to work with your doctor to develop an HAE treatment plan (including emergencies) that fits your individual needs.

Below are highlights of on-going US HAEA projects and activities:

Research for Finding a Cure–The US HAEA’s Scientific Registry provides the opportunity for patients and their family members to supply researchers with the data needed to unlock HAE’s remaining secrets and move us toward better therapies and a cure. You can make a difference for yourself and future generations by joining in the US HAEA Scientific Registry, so go to www.haea.org for more information and to sign up today.

Regional Patient Meetings – we hope you have been able to take advantage of one of the six patient meetings we have hosted around the country this year. These regional events have provided opportunities for HAEA friends to have their questions answered by world class HAE physician/researchers and to learn about the newly available FDA-approved HAE medicines, including how to navigate the insurance processes necessary to be reimbursed for them. One Regional Meeting remains – we hope you will join us on Nov. 6, 2010 in Anaheim, CA. Please register at www.haea.org today!

Capitol Hill Day to Raise National Awareness – your US HAEA is always moving forward to better serve each and every HAE friend. In addition to everything mentioned above, our 2010 project list includes a new venture into the world of political advocacy. Your US HAEA will be there to represent you on Capitol Hill in Washington, DC. Watch our web site for more information on this crucial plan to bring HAE to the awareness of our legislators and secure federal funding for HAE research.

The US HAEA Educational Initiative – we are excited to announce that professional videos, featuring HAE patients and world class HAE researchers, will soon be available on a new,linked HAEA website. This Internet-based program is aimed to increase HAE education and awareness in the US and around the world. Watch for an email coming soon with an official announcement of this groundbreaking new program.

The bottom line is that we are a simple phone call or email away, ready to help you with any and all of your HAE-related needs. As always, we will periodically send emails and newsletters to keep you up to date on everything the US HAEA undertakes. We appreciate your support as we work every day to help our amazing patient community.

Warmest Regards to All!

Tony Castaldo
President, US HAEA

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2010 Regional Patient Meetings – All across the US

Following up on the great success of our October 2009 National Patient Conference, the US HAEA is conducting six (6) Regional Patient Meetings in 2010.

These meetings provide an opportunity for our HAEA friends to gather in a smaller and more intimate setting.

All six provide the chance to learn more about the changing landscape of HAE today, develop lasting connections with other patients in your geographical area, as well as pose questions to the top HAE physician experts in the US.

US HAEA Regional Patient Meetings 2010
Jan 23 Metro DC area
Apr 17 Cincinnati, OH
June 12 Portland, OR
Sept 11 Dallas, TX
Oct 2 New York City area
Nov 6 Anaheim, CA

Registration is now open for the very last meeting of this year.
Sign up online at www.haea.org today !

US HAEA 2010 Regional Patient Meetings – Portland, OR, Dallas, TX and NYC Area Highlights

100 HAEA friends arrived in Portland, OR on June 12, 2010 to attend the third of our US HAEA Regional Patient Meetings scheduled for 2010. And about 100 more arrived in Dallas, TX on September 11 for our fourth Meeting. On Oct. 2, a large group from the NYC area gathered in Greenwich, CT for a day packed with information and fun together.

Below are highlights from all meetings held:

Opening Remarks by US HAEA President Anthony Castaldo
Tony opened each conference, noting that the landscape of HAE has changed greatly in just the past year.

Tony said, “The HAEA is working passionately to make sure that everyone, including physicians and insurance companies, is involved in providing HAE patients a treatment CHOICE – a plan that best fits their individual needs.

Three products to treat HAE are now FDA-approved and additional HAE treatments are expected to be approved
in the near future. The HAEA’s Patient Services team is devoted to providing each and every HAE friend and their doctor with all of the information necessary to create a treatment program that provides a healthy life.”

Tony also spoke about how much the HAE Association has achieved over the past decade as a patient services and research organization, expressing gratitude to our members and their families for playing an integral part in making the Association the formidable force it is today in the world of HAE. He closed each meeting emphasizing, “It is in our day-to-day interactions with all of you, our HAE friends, that we are able to demonstrate the HAEA’s culture of caring and kindness.”

At each meeting, Executive Vice President Janet Long pointed out the HAEA’s mission which includes doing everything humanly possible to help every HAE friend lead a normal life. She also presented a brief presentation on the US HAEA Scientific Registry. The Registry will enable scientists to explore the genetics of HAE and open doors to new treatments and, one day, a cure!

Portland’s attendees achieved the highest rate of participation – 50% of everyone who came to the meeting joined the Registry on June 12!

Portland Keynote Presentation – Dr. Bruce Zuraw and Dr. James Baker

The meeting’s keynote presentation was shared by two of our country’s most renown HAE experts – Dr. Bruce Zuraw, Professor of Medicine in Residence at the University of California, San Diego School of Medicine and Dr. James Baker, who practices pediatrics and allergy & immunology in the Portland area. Dr. Baker has a wide variety of research interests, including HAE, and many of his own HAE patients were in attendance.

Dr. Zuraw began his remarks with a brief overview of how HAE presents to a physician as a disease. He followed with the challenges of diagnosing HAE.

Dr. Zuraw examined what is commonly known as HAE Type III, saying he prefers the term “Familial Angioedema”. He noted that estrogen is believed to play a role in the symptoms of this type of swelling, but cautioned that there is still very little known about this type of angioedema – he hopes more research will focus on it in the future.

Lastly, Dr. Zuraw spoke about the history of HAE treatment options. He pointed out that in a survey produced by the US HAEA, the vast majority of patients said they would choose to stop treatment with steroids if other medicines were available – and in 2010, they are!
Dr. Zuraw reviewed both acute and prophylaxis treatment options – the medicines already FDA-approved and those seeking approval.

Dr. Zuraw closed with an impassioned plea to all HAE patients and their family members to join the US HAEA Scientific Registry – this project will provide crucial data for future HAE research. Patient participants will be the key to finding a cure.

Dr. James Baker provided a fascinating presentation entitled “How Doctors Think”. He spoke about the mistakes that doctors commonly make when faced with HAE symptoms – when is HAE not HAE, for example. Dr. Baker covered special risk factors for HAE attacks, including dental procedures or illness.

Dr. Baker went on to describe how a physician’s own particular personality traits may mesh or be at odds with his/her patient’s personality. Speaking from the physician’s point of view, he said that emotions play a role in how doctors work with their patients. He offered these practical tips of what YOU can do when meeting with your doctor:
* carry your pertinent medical records
* carry your medications
* know your physician’s direct phone number
* know your insurance information
* know which hospitals have the new HAE medicines on hand – plan ahead when traveling
Try to view your own situation from your physician’s point of view – remember that HAE patients can have other diseases that mimic HAE or co-exist with HAE. HAE is rarely simple. And, of course, always be sure to advocate for your own health.

Dallas Keynote Presentation – Dr. Bruce Zuraw and Dr. William Lumry

Dr. Zuraw presented a keynote address outlining the same important background on HAE as listed above.
Dr. Lumry, Clinical Professor of Internal Medicine at the Univ. of Texas Southwestern Medical School, presented a look at the burden HAE presents on the lives of HAE patients. Dr. Lumry cited the Burden of Illness study pioneered by the US HAEA to measure the impact of HAE on one’s finances, social life, career, and mental and physical well-being. The impact was noted to be great when the survey was undertaken in 2007-2008 and Dr. Lumry noted that with the advent of three new FDA-approved medications, we can all hope that the burden of HAE will no longer be such a challenge to leading a normal, healthy life.

Dr. Lumry covered the current need for better diagnosis and the crucial need for each HAE patient to develop an individualized treatment plan (with their HAE treating physician)as well as to have an emergency plan in place.

Dr. Lumry concluded with what HAE patients need to do:
*Get an accurate diagnosis
*Get your family members tested
*Construct your HAE Action Plan – for treatment and any emergency
*Join and support your US HAEA and the US HAEA Scientific Registry

Greenwich Keynote Presentation – Dr. Paula Busse and Dr. Mark Davis-Lorton

Dr. Paula Busse, Asst. Professor of Medicine, Mt. Sinai Hospital, discussed the history of HAE as a disease, HAE diagnosis and HAE treatment. She urged every HAE patient to take advantage of the new FDA-approved HAE therapies and be sure to have both a treatment and emergency plan in place.

Dr. Mark Davis-Lorton, Director of Clinical Immunology, Winthrop-University Hospital, looked in depth at all HAE therapies. Dr. Davis-Lorton noted that new research will bring even more HAE therapies in the future.

He urged HAE patients to change their HAE mindset:
*Know your triggers
*Know your treatment options and have a treatment plan in place
*Don’t suffer silently – treat attacks early and aggressively
*Work with your physician to make your HAE therapy work for you
*Educate yourself – educate your family – educate the world!

Representatives from each of the five drug companies provided updates

ViroPharma’s (Cinryze brand of C1 inhibitor) was approved last year by the FDA as an attack prevention therapy. ViroPharma has put together an infrastructure, Cinryze Solutions, to make their product available to every HAE friend that could benefit from the medicine. ViroPharma has put together an infrastructure, Cinryze Solutions, to make their product available to every HAE frined that could benefit from the medicine.

CSL Behring (Berinert brand of C1 inhibitor) received FDA approval for their C1 inhibitor infusion for treating acute HAE attacks (attacks that have already begun) on October 12, 2009. CSL has put together an infrastructure, B.E.N., to make their product available to every HAE friend that could benefit from the medicine.

Dyax (Kalbitor) is a recombinant product that inhibits kallikrein – an enzyme that plays a key role in the biochemical processes that lead to HAE-related swelling. The product received FDA approval in early December 2009. Dyax has put together an infrastructure, Kalbitor Access, to make their product available to every HAE friend that could benefit from the medicine.

The US HAEA is ready to (1) provide you with a direct referral into each of the infrastructures listed above, and (2) act as your advocate and help you work with your doctor, the specialty pharmacy who will ship your medicine, drug company representatives, and insurance providers. Please contact the HAEA’s Patient Services group for more information– Donna Davis donna-davis@haea.org or Michelle Williamson michellewilliamson@haea.org.

Shire (Firazyr) is an acute attack therapy that is administered by a subcutaneous (under the skin) injection. The product has already been approved in Europe. If you would like more information about this product, please contact your US HAEA Patient Services Representative.

Pharming NV (Rhucin brand of recombinant C1 inhibitor) cited successful clinical trial results for their product, Rhucin – a recombinant human C1 inhibitor protein that is derived from the milk of genetically altered rabbits. The company is still in the process of obtaining a US license for their product. If you would like more information about this product , please contact your US HAEA Patient Services Representative.

US HAE Association Scientific Registry
Dr. Bruce Zuraw and the HAEA, working together, designed a state-of-the-art patient registry that will produce high quality “scientific grade” data.
Read the full article on the US HAEA Scientfic Registry below and then go to www.haea.org to sign up today!

Physician Question and Answer Panel
Dr. Zuraw, Dr. Baker, Dr. Lumry, Dr. Busse and Dr. Mark Davis-Lorton answered a great variety of questions from attendees. Unfortunately, there is not enough space
to post the detailed questions and answers in this summary. The US HAEA is happy to personally answer questions from each and every member of our community – simply contact your Patient Services Representative or submit a question through our website link: http://www.haea.org/contactus.php

The US HAE Association 2010-2011
Some of the many on-going programs and plans that will benefit all HAE patients were highlighted at the end of each meeting -
* A relaunch of our web site with new features and to ensure it remains the most authoritative, unbiased Internet source for HAE-related information.
* A newly launched political advocacy campaign – stay tuned for more information on this grass roots effort
* An online HAE video resource – one section dedicated to physician research and one section dedicated to empowering HAE patients

We were glad to see so many HAE friends at all of our Regional Patient Meetings. We look forward to seeing everyone at our very last meeting in Anaheim, CA! Please be sure to register at www.haea.org !
Announcing the new HAE Image Repository

Announcing an undertaking that you, as a member of the US
HAEA, can personally support – the new HAE Image Repository.

Very few actual images exist of the symptoms of HAE that
physicians may encounter in their office or emergency room.
The HAE Image Repository will help us fulfill our mission to
educate both medical professionals and the general public
about HAE.

The Repository is an on-line database of photos of patients in various stages of an HAE attack that can be purchased for use in a variety of settings.

We hope you will support this new US HAEA endeavor by providing your own photos that capture features of an HAE attack you have experienced.

NOTE: to submit an image, you must be a member of the US HAE Association.
Please email your photos to images@haeimages.com

EACH image must be listed and described individually on a consent form to protect your privacy. Under NO circumstances will any personal information be disclosed to anyone outside of the US HAEA or those acting under its authority.
Consent forms may be requested at images@haea.org

They say a picture is worth a thousand words – your photos or medical images (x-rays, etc.) will help educate healthcare professionals as well as the general public about HAE. Your HAE images may be used for:
* publications by academicians and clinicians in peer reviewed journals
* educational presentations for continuing education of Healthcare Practitioners
* advertising and promotional materials used by pharmaceutical companies.

As a non-profit organization, all proceeds obtained from the HAEA Image Repository will be used to support the core services and mission of the US HAEA.

We hope you will donate your photos for the HAE Image Repository – together we can make a better future for all HAE patients and families.

US HAEA Scientific Registry – Join Today!

Patient Driven Research for a Cure!
If you check our website counter, you will see that
we are nearing our goal of 750 registrants by the end of the year!

We are looking for every person who has been diagnosed with
HAE and all those who are a blood relative of someone with HAE to join the Registry.

So if you have not already joined, please go to www.haea.org , read about how to participate in the Registry by clicking on the Scientific Registry icon. And please encourage your family members to join too!

Sign up today and be part of this great undertaking to improve the life of every HAE patient! You can make a difference!

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The US HAEA is now on Facebook!

As you may already know, your HAEA is now on Facebook! Please join your HAEA friends and family on Facebook by going to http://www.facebook.com/group.php?gid=340733657767 .

This Facebook page is provided for our HAEA members in response to your requests for more social networking opportunities. We value the struggles and triumphs of all of our HAEA friends and hope you will make use of this page to share your HAE stories.

It is important for you to remember this is a public forum – it is not HIPAA compliant and although we will try our best, we cannot guarantee your privacy.

Any questions regarding medical difficulties, physician referrals, medicines, etc. should be posted on our privacy-protected HAEA Listserv (http://mailman.listserve.com/listmanager/listinfo/discusshae).

Members of the US HAEA may be confirmed as Facebook friends for this site – if you are not yet a US HAEA member, please go to www.haea.org and sign up today!

We are excited about providing this Facebook page for our HAEA community and look forward to all the great HAE connections that will be made here!

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Your Patient Services Representatives by Region

Donna Davis, Assistant Vice President for Patient
Services and Clinical Programs
(808) 216-1029
donna-davis@haea.org
(Supervises All Regions)

Region -1 Michelle Williamson, Director for Patient Services and Clinical Programs
(972) 814-5205
michellewilliamson@haea.org
(Region 1 includes – Alaska, Colorado, Hawaii, Illinois, Kentucky, Missouri, Nevada, New Mexico, South Dakota, Utah and Washington DC)

Region – 2 Lois Perry, Assistant Director for Patient Services and Clinical Programs
(559) 259-0572
loisperry@haea.org
(Region 2 includes – California, Iowa, Maine, Mississippi, Montana, Oregon, Vermont, Virginia and West Virginia)

Region – 3 John Williamson, Patient Services Representative
(972) 984-0621
john@haea.org
(Region 3 Includes – Arizona, Idaho, North Dakota, Pennsylvania, South Carolina, Texas and Wyoming)

Region – 4 Sally Urbaniak, Patient Services Representative
(904) 826-6700
surbaniak@haea.org
(Region 4 includes – Connecticut, Delaware, Florida, Massachusetts, New Hampshire, New York, and Rhode Island)

Region – 5 Jenny Barnes, Patient Services Representative
(252) 585-0763
jennybarnes@haea.org
(Region 5 includes – Alabama, Arkansas, Georgia, Louisiana, Michigan, Minnesota, North Carolina and Oklahoma)

Region – 6 Candi Fuqua, Patient Services Representative
(308) 627-4586
candifuqua@haea.org
(Region 6 includes – Indiana, Kansas, Maryland, Nebraska, New Jersey, Ohio, Tennessee, Washington and Wisconsin)

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For Clinical Trial Referrals, Contact Patient Services/Clinical Programs Representative, John Williamson
(972) 984-0621
john@haea.org