1/10,000 may be the small prevalence of HAE, but it was the big thinking at this year’s AAAAI

Hereditary Angioedema (HAE), a very rare and potentially life threatening genetic condition, stole the thunder at the AAAAI this year.  One of our brand engagement managers, Layne Shapiro, attended the conference to represent the Stinson Brand Innovation team.  She shares these observations.

HAE is a rare disease that occurs in only about 1/10,000 to 1/50,000 people. Symptoms include episodes of swelling (edema) in various body parts including the hands, feet, face, and airway.  Until this past year, there were no approved treatments of HAE in the US.


The buzz at AAAAI was regarding the 3 recently approved treatment options for HAE:

• CINRYZE™ (C1 esterase inhibitor (human): Approved for patient self administration, CINRYZE™ is a C1 esterase inhibitor indicated for the routine prophylaxis against angioedema attacks in adolescent and adult patients with HAE.
• KALBITOR^® (ecallantide): The first approved for subcutaneous treatment for all acute HAE attack locations, Kalbitor must be given by a doctor or nurse in a healthcare setting. KALBITOR^® is an inhibitor of the protein kallikrein used for HAE. 
• BERINERT^® (C1 Esterase Inhibitor, Human): Approved for treatment of acute abdominal or facial attacks of HAD in adult and adolescent patients, BERINERT^® is a plasma-derived concentrate of C1 esterase inhibitor (human).

 The US Hereditary Angioedema Association (HAEA) had a table in the exhibit hall, as well as a postcard insert in the registrants’ bag which described the condition, the association, and the US HAEA Scientific Registry.

Through educational grants, CSL Behring, Dyax Corp, and ViroPharma funded a dinner symposium entitled "Hereditary Angioedema: Diagnosis and Management Options for the 21st Century." Speakers from around the world included Bruce L. Zuraw, MD, Marco Cicardi, MD, and Konrad Bork, MD. They discussed topics such as identifying appropriate diagnostic tests, proper interpretation and limitation for each assay, acute treatement options, and the selection, dosage and monitoring of therapeutic agents used in controlling HAE.

Typically it takes about 10 years before a person will be diagnosed with HAE. Marc Riedl, MD, MS, has put together a CME course with ReachMD for allergists and healthcare professionals on overcoming the many obstacles in HAE with regard to diagnosis and treatment.

With new treatment options available, diagnosis has become increasingly important.

Pharmaceutical and biologic companies leverage advocacy groups

These thoughts were shared by Layne Shapiro, one of our brand engagement managers, as she prepares to attend the AAAAI conference in New Orleans this weekend.

Millions of sufferers of autoimmune and other rare diseases have stories of diagnosis difficulty and often actively search to learn more about their condition and treatment options online.  With the massive amount of information available on the Web, patients are seeking out information on their own.  Advocacy groups and sites like WebMD publish information that consumers soak up.  As a result, pharmaceutical marketers are proactively reaching out to help patients understand their condition. 

We engage with advocacy groups including the Immune Deficiency Foundation, Hereditary Angiodema Association, and the Magic Foundation.  These groups can be helpful in understanding the language used by patients and physicians, making sure that the brand message is in line with what the advocacy group, and recruiting patients to participate in market research groups.

When developing a brand story to set biologic brands apart, it is our job to discover a brand’s unique story beneath all the safety and efficacy data, and determine the target Customer and indication among the numerous audiences. The key to a successful brand story is to share what makes this brand different, not necessarily better, more effective, or cheaper.  The benefit-driven strategies seem to be the only kind that work to truly differentiate a biologic product that exists in a market place crowded with other brands that have common features.

Looking ahead to the upcoming AAAAI Annual Meeting, where pharmaceutical and biologic companies will gather with allergy and immunology experts to exchange ideas on new therapies and treatments, I am excited to see the innovation. Each pharmaceutical and biologic company tries to distinguish their solution as the best, however no one can make that claim and every brand has its own story. 

Watch for my next blog which will be on the brand stories seen at this year’s AAAAI.