Tracy Conaway's Testimony Before the FDA's Blood Products Advisory Committee - May 2 2008

Anthony Castaldo's testimony
Sally Urbanek's's testimony
Janet Long's testimony
Michelle Williamson's testimony
Janet Long's testimony
Dr. Barakat's testimony
Beth Mercante's testimony
Tracy Conaway

My name is Tracy Conaway, and I am here today to share with you the spouse’s perspective of HAE and the horrendous psychological and physical burden this disease creates. Thank you very much for the opportunity to be here today to tell our story, but first it is important to note that I do not have any financial relationships to disclose.

I married Norm Conaway 22 years ago. He had a tragic history of HAE in his family, with one of his sisters dying from the disease in the early 1970’s, when she was just 26 years old. She was found at home with an epi pen in her leg, surrounded by her two infant children.

Despite what the disease had done to his family, and despite his very severe and very frequent attacks, Norm never let HAE get the best of him. He was a police officer for 24 years and was excited to be a subject in the first clinical trial for an HAE therapy many years ago.

Our family was busy and productive. We were met with relief when we were finally able to enroll Norm in Lev’s C1INH clinical trial. Having open label access to C1 inhibitor concentrate as both a prophylactic therapy and for acute treatment was nothing short of a miracle my husband.

But before he started receiving Cinryze, Norm took desperate measures to find relief from this terrible disease, driven like so many other HAE patients because C1 inhibitor is not available in the United States.

Norm, then a police officer in Tacoma, Washington, came home quite late from work one night and told me that his throat was swelling. He assured me he would be fine, that the swelling would "go down" - because it usually did.

As we settled into bed, he propped himself up with pillows to prevent his neck from bending and cutting off the little breathing space left in his airway. I begged him to go to the hospital, but men can be so stubborn. He was tired of being the "freak-show" whenever we showed up at the emergency room, forced to deal with residents and nurses who had no idea what was happening or how to treat him.

A few hours after I nervously fell asleep, I noticed that he got out of bed and placed a small knife on the nightstand. I asked him why it was there. He answered, in a gravelly voice that indicated just how swollen his throat was, that I would have to use the knife to open his airway if the swelling got much worse. He had two tracheotomies previously, so he knew what kind of relief they could provide.

Before I could explain to him, there was no way I could ever do that, his eyes rolled back in his head, and his breathing stopped.

Then, in the next moment, his eyes opened suddenly, he grabbed the knife and stuck it through his neck, into his throat.

I pulled him off the bed and began CPR – there was blood everywhere. It was difficult for me to get any air into his lungs because his throat was now almost completely shut from the HAE-induced swelling.

Miraculously, the paramedics arrived promptly, and were able to get a small tube into his crude tracheotomy. Norm was transported to the hospital alive, where they his airway was cleared, his wound was stitched up and he was given fresh frozen plasma. On its own, the swelling went down and my husband walked out of the ICU a few days later – only to have his job taken away because the department thought he couldn’t have this disease and be a cop.

I am here today telling you this story because Norm couldn’t be. He died 14 years later, just four years ago, at the age of 47 from what we are convinced were complications related to decades of extremely high doses of anabolic steroids. The toxic steroid therapy barely moderated the frequency and severity of his HAE attacks, but it remains the only treatment option available to the thousands who would give anything for the promise of relief.

We knew that having children was a risky proposition, so Norm and I waited a long time before our son, Jake, was born. Tested when he was just a few months old, Jake had HAE. He had his first swelling attack just three months after he lost his dad. He came to me one morning, showed me his swollen arm and said “Mommy, I think I have some of dad in me.”

Norm would be extremely proud that we are here today, continuing to work to bring a C1 inhibitor replacement therapy for my son and other U.S. HAE patients who desperately need it for acute and prophylactic use. We can’t bring my husband back, but you have the power to save countless other lives.