HAEA TODAY              Spring 2009                Newsletter

Your HAE Association is growing with you in mind !

 

Here are some highlights of our  2009 activities:

 

-- Serving our Patient Community since 1999 --

The HAEA is committed to helping each and every HAE friend with all HAE-related questions and needs. To accomplish this goal, we continue to expand our Patient Services staff, and now have five trained fellow HAE friends who are ready to serve you.  The names and contact information for the HAEA's Patient Services Representatives are listed at the end of this newsletter. 

-- Towards A Cure!  Research provides the path towards finding a cure, so the HAEA and our medical advisors have designed a scientifically-based Patient Registry that will provide the research community with an incentive to focus on our rare disease.  You will be hearing more about the Registry in the coming months.

 

-- The HAEA webpage -- your authoritative source for news and all things HAE!  Be sure to check the HAE webpage often -  we are always upgrading the site and adding more HAE-related information. 

 

-- Wallet-sized HAE Patient Cards -- we are in the process of creating wallet-sized HAE Patient Cards.  See the HAEA Homepage to sign up now! 

www.haea.org

 

HAEA Accomplishes Largest Study Ever Attempted

 

Your HAEA Patient Services Representatives by Region

      HAEA Accomplishes Largest HAE Study Ever Attempted !

     The HAE Association has completed the largest scale study of      
     HAE patients ever conducted. 731 HAE friends participated in
     our recent study that will provide the scientific community with
     scientifically valid data regarding the safety, effectiveness, and
     side effects of HAE medicines.  

     Below are a few early "topline" study highlights:

 

 -- 367 of the 731 HAE patient respondents (49.5%) reported that they were currently taking an anabolic androgen for their HAE.  Of these, 73% indicated that the therapy was moderately or completely effective.  However, 87% indicated that they would reduce their androgen dose if another effective therapy was available.  Almost half of the patients currently taking androgens (48%) reported that side effects outweighed the medicine's benefit to a moderate or absolute degree.

-- 197 of the 731 respondents (26.5%) reported that they had previously taken androgens but discontinued the medicine.  80 percent of these patients cited ineffectiveness or significant side effects as the reason for stopping androgens.

-- The 167 HAE patients (22.5%) who indicated that they had never taken androgens appear to represent a noteworthy unmet medical need.  75 percent said they have been to the emergency room for acute attacks.  In addition, 46 percent said that they regularly use narcotics to relieve pain associated with attacks for an average of 33 days a year.

 

We are in the process of preparing manuscripts that will be submitted to a variety of medical journals.

If your doctor has prescribed Cinryze (TM), the HAEA Patient Services team is ready to help! 

Here is what you can do to make sure you are getting the most out of your Cinryze therapy: 

1) Contact the HAEA Patient Services Representative for your region of the country (see list below).  
2) Your HAE Patient Services Representative will provide you with the name and phone number for a Cinryze Solutions case worker.  
3) When you call your Cinryze Solutions case worker, he/she will ask for two bits of information: (1) the physician who will be setting up your treatment plan and (2) your insurance company.
4) Your Cinrzye Solution Case worker will then take it from there and begin the process that will ultimately result in you getting access to the medicine.
 
There are are far too many steps in the process to mention here, but suffice it to say that Cinryze Solutions and your HAE Association Patient Services Representative will be advocating on your behalf and will keep in close contact during every step.
 
 
PLEASE LOCATE YOUR HAEA PATIENT SERVICES REPRESENTATIVE FROM THE
 
LIST AT THE BOTTOM OF THIS PAGE!

On Feb. 4, 2009 the U.S. Food and Drug Administration's (FDA) Pulmonary-Allergy Advisory Committee voted (6 yes, 5 no, 2 abstentions) in favor of approval of DX-88 (ecallantide) for the treatment of acute attacks of hereditary angioedema (HAE).

      and Texas)   

Region-2  Lois Perry         (559) 259-0572       
loisperry@haea.org
(Region 2 includes-California, Iowa, Illinois, Indiana, New Hampshire, Oregon, Tennessee,  Utah, Louisiana and West Virginia)
 
Region-3  Donna Davis      (808) 216-1029      
donna-davis@haea.org
(Region 3 included-Alaska, Hawaii, Idaho, Minnesota, Missouri, Montana, Rhode Island, Wisconsin and Wyoming)
 
Region-4  Sally Urbaniak   (904) 826-6700      
surbaniak@haea.org
(Region 4 includes-Connecticut, Delaware, Florida, Massachusetts, New Jersey, New York, North Dakota , Ohio, Pennsylvania, Vermont and Washington)
 
Region-5   Jenny Barnes    (252) 585-0763      
jennybarnes@haea.org
(Region 5 includes-Alabama, Arkansas, Georgia, Virginia, Maryland, Michigan, Mississippi, North Carolina, Oklahoma, South Carolina and South Dakota)