Stephen Petty, of Colchester, CT, a Navy submarine veteran and businessman, had been experiencing frequent colds, bronchitis attacks, and constant coughing. He started seeing pulmonologists when he was in his mid-30s, who diagnosed him with asthma, chronic bronchitis and post nasal drip. However, even with treatment, his symptoms didn't improve. More than 25 years later, in 2005, Stephen started seeing a new pulmonologist and received a new diagnosis—emphysema due to alpha-1 antitrypsin (AAT) deficiency, or Alpha-1.
Upon hearing his AAT deficiency diagnosis, Petty says his reaction was, "What is it?"
His pulmonologist gave him information about AAT deficiency, a hereditary condition that can cause emphysema, liver disease, and other health issues over a person's lifetime due to reduced levels or absence of AAT protein in the blood and lungs. Stephen decided to begin AAT augmentation therapy—in which a medication containing the AAT protein is infused throughout the blood stream. Today he sees a pulmonologist every six to eight months, and in addition to AAT augmentation therapy, uses inhalers, uses oxygen at night and when exerting himself, and takes steps to stay healthy, including by regularly taking walks.
Petty also stays connected and active in the Alpha-1 community. Two years after his diagnosis, he joined a local support group—the Connecticut Nutmeggers—and later served as its leader. He's also attended national conferences and education days to learn more about AAT deficiency.
"Over the years I've had a lot of support from a lot of different people, and every piece helps," he says, "The community is one big family, and helps one another stay positive. No one takes a 'woe is me' attitude."
Providing one-on-one guidance
He's recently increased his level of participation in the Alpha-1 community through his new job—that of Patient Services Coordinator with the AATmosphere iNSPIRATION program.
Through the AATmosphere iNSPIRATION program, Baxter provides AAT deficiency disease education and support services to patients through a multi-year partnership with AlphaNet, an organization that provides health management services to patients with AAT deficiency while funding research for new treatments. Through the program, Alpha-1 patients who are being treated with AAT augmentation therapy receive individualized support and comprehensive education through monthly communication with an AATmosphere iNSPIRATION AlphaNet Coordinator. Coordinators identify educational gaps, and work with each patient individually to provide support, including guidance on facilitating more effective dialogue with their physician and addressing insurance issues.
"We support other Alphas by calling regularly to check in, helping with issues they may be experiencing, or just by talking with them," explains Petty. "They know they can call me anytime they need to."
Sometimes patients who call Petty haven't received much information about the condition from their physicians, or don't know anyone else with AAT deficiency.
"Most of the time, our Coordinators are the only other Alphas these patients have spoken with," says Robert Barrett, CEO of AlphaNet. "Unless you meet other Alphas at a support group or a conference, it can be difficult to find someone else who has the condition."
"The AATmosphere iNSPIRATION Coordinators work hard to help patients remove obstacles so that ultimately the patients benefit," Barrett says.
To spread the word about the program, Baxter has information on the website, RuleItOut.org, and is supporting it through the distribution of materials directly to Alpha-1 patients, pulmonologists and primary care physicians throughout the U.S.
"This is an exciting program," says Kevin Lello, Baxter group manager, marketing, biotherapeutics. "It integrates seamless communication across our teams, partners and customers to help improve the patients' experience."
Barrett adds, "In addition to gaining knowledge from these resources, this program offers participants a regular channel to connect and gain support from a strong community of peers. This type of joint initiative can make a significant difference in the lives of Alpha-1 patients."
Petty stresses that while it's important to have the resources and support for those who know they have AAT deficiency, it's just as essential to raise awareness among people who are unfamiliar with the disease, so that patients don't go undiagnosed for as long as he did. On average, it takes seven years and three to four physicians before an Alpha-1 patient receives an accurate diagnosis, and only approximately 10 percent of those with the disease are actually correctly diagnosed.
"The test for AAT deficiency is simple and quick; it's so important for people to know it's out there," says Petty. "And once diagnosed, we want patients to know that there's a supportive, caring community that they can turn to."
Learn more about the AATmosphere Inspiration program and the testing process for AAT deficiency at www.ruleitout.org.