Wayne Life After Alpha-1 Diagnosis Melodie Getting the Right Support

Life After Alpha-1 Diagnosis

Wayne Vicknair

As a self-employed compensation consultant in New Orleans, Wayne Vicknair has enjoyed the freedom to truly appreciate where he lives. In fact, he once served as King of one of the city’s famous Mardi Gras parades. Vicknair is also an avid traveler, and it was a mild hiking excursion in Aruba several years ago that eventually led him to be diagnosed with alpha-1 antitrypsin deficiency (AATD) and emphysema.

Although he had been treated for asthma for a number of years, Vicknair was surprised at the breathing difficulties that came over him while walking up a hill on the island. “I actually had to stop and catch my breath,” he recalls. “I saw that a lot of the people passing me on the trail were elderly and wondered why I was having so much trouble.”

When he returned from his trip, Vicknair was referred to a pulmonologist who administered a breathing test. “He put me on a heavy dose of medication for ten days, as though I had suffered a severe asthma attack,” Vicknair explains.

“When my breathing didn’t improve, he recommended testing for something I had never heard of before, AATD. Ironically, I learned later that a representative from Baxter Healthcare had been at my pulmonologist’s office earlier that day encouraging him to test certain patients for AATD even though it was considered a rare disease.”

“When my breathing didn’t improve, he recommended testing for something I had never heard of before – alpha-1 antitrypsin deficiency, or AATD.”

Three weeks after taking the simple blood test, Vicknair received a letter from his pulmonologist confirming that he did indeed have AATD. “I was also diagnosed with emphysema. I met with him and learned much more about this deficiency of a naturally occurring protein that protects the lungs,” he says. “I also learned that any current damage to my lungs could not be reversed, but that through what is called ‘AAT augmentation’ I could receive a weekly infusion that would augment the protein that my body isn’t producing naturally.”

After consulting with his primary care physician, Vicknair began AAT augmentation about six weeks after being diagnosed. “Before beginning the infusions, I called my insurance company and was asked a lot of questions regarding the illness to see whether or not I qualified for AAT augmentation. The people from the Alpha-1 AATmosphere program were extremely helpful in providing information and, ultimately, getting approval for me to receive the AAT augmentation infusions. Since then, they have continued to help coordinate with my home health care agency to get my infusions done at home.”

Vicknair says he has also benefited from the resources found on the Alpha-1 AATmosphere program’s website at www.aatmosphere.com. “You can even listen in to conference calls on various topics related to AATD,” he says. “And I really like that they have a nurse available to talk with if you have any problems with your infusion or anything at all related to the illness.”

It’s this type of support that Vicknair says inspires him to tell anyone diagnosed with AATD that there is help and hope. “AAT augmentation has become a routine part of my life. I continue to do many of the things I’ve done before. I still try to go on at least two vacations a year, and I say thank goodness that my doctor tested me for AATD that day.”

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GLASSIA [Alpha1-Proteinase Inhibitor (Human)]

GLASSIA is indicated for chronic augmentation and maintenance therapy in individuals with emphysema due to congenital deficiency of alpha1-proteinase inhibitor (Alpha1-PI), also known as alpha1-antitrypsin (AAT) deficiency.

  • The effect of augmentation therapy with GLASSIA or any Alpha1-PI product on pulmonary exacerbations and on the progression of emphysema in Alpha1-PI deficiency has not been demonstrated in randomized, controlled clinical trials.
  • Clinical data demonstrating the long term effects of chronic augmentation and maintenance therapy of individuals with GLASSIA are not available.
  • GLASSIA is not indicated as therapy for lung disease in patients in whom severe Alpha1-PI deficiency has not been established.

Detailed Important Risk Information for GLASSIA

  • GLASSIA is contraindicated in IgA deficient patients with antibodies against IgA. GLASSIA is contraindicated in individuals with a history of severe immediate hypersensitivity reactions, including anaphylaxis, to Alpha1-PI products.
  • GLASSIA is made from human plasma. It may carry a risk of transmitting infectious agents, such as viruses, and theoretically, the Creutzfeldt-Jakob disease (CJD) agent.
  • Administer GLASSIA at room temperature at a rate not greater than 0.04 mL/kg body weight per minute. If anaphylactic or severe anaphylactoid reactions occur, discontinue the infusion immediately.
  • Administer GLASSIA within 3 hours of entering the vials.
  • Safety and effectiveness in patients over 65 years of age have not been established.
  • Two serious adverse reactions observed on two separate occasions during clinical studies with GLASSIA were cholangitis and exacerbation of chronic obstructive pulmonary disease (COPD).
  • The most common product-related adverse reactions in clinical studies were headache and dizziness.

Please see GLASSIA Full Prescribing Information for full prescribing details.

ARALAST NP [Alpha1-Proteinase Inhibitor (Human)]

ARALAST NP is indicated for chronic augmentation therapy in patients having congenital deficiency of A1-PI with clinically evident emphysema.

  • The effect of augmentation therapy with ARALAST NP on pulmonary exacerbations and on the progression of emphysema in alpha1-antitrypsin deficiency has not been demonstrated in randomized, controlled clinical trials.
  • Clinical data demonstrating the long-term effects of chronic augmentation or replacement therapy of individuals with ARALAST NP or ARALAST are not available.
  • ARALAST NP is not indicated as therapy for lung disease patients in whom congenital A1-PI deficiency has not been established.

Detailed Important Risk Information for ARALAST NP

  • ARALAST NP is contraindicated in IgA deficient patients with antibodies against IgA, due to the risk of severe hypersensitivity.
  • ARALAST NP is derived from pooled human plasma. It may carry a risk of transmitting infectious agents, e.g., viruses and theoretically, the Creutzfeldt-Jakob disease (CJD) agent.
  • The recommended rate of administration (≤0.08 mL/kg/min) should be closely followed and vital signs monitored continuously. If anaphylactic or severe anaphylactoid reactions occur, the infusion should be discontinued immediately.
  • Safety and effectiveness in patients over age 65 years of age have not been established.
  • ARALAST NP should be administered at room temperature within three (3) hours after reconstitution and should be administered alone, without mixing with other agents or diluting solutions.
  • The safety of ARALAST NP was evaluated with ARALAST in a crossover clinical PK comparability study. The most common adverse events deemed related to ARALAST NP included headache and musculoskeletal discomfort. No serious adverse reactions or deaths were reported in the study. In the ARALAST pivotal study, the most common adverse events were headache and somnolence.

Please see ARALAST NP Full Prescribing Information for full prescribing details.