The president and co-founder of the Alpha-1 Foundation recognizes in respiratory therapists their crucial role as partners in improving health care for people with alpha1- antitrypsin deficiency.
John W. Walsh
I must begin this editorial with a hearty thank-you for the dedication of those working in the field of respiratory therapy. Thank you for your professionalism; for helping to educate individuals with alpha1-antitrypsin (AAT) deficiency (or COPD) about the importance of pulmonary rehabilitation, exercise therapy, and health management; and for providing an interface with our family and physicians. I have a special appreciation for RTs because of my own experience with clinical research studies, pulmonary rehabilitation, hospitalizations, and, most recently, building a true collaboration with your community of professionals through the American Association for Respiratory Care (AARC). Our alpha1 community has come to realize the significant value RTs bring to our health care team. We have initiated several collaborations with the RT community, examples of what we can accomplish working together and building on the logical partnership between patients and RTs.
One of our daunting challenges is to promote early detection for individuals with alpha1. Those of us with alpha1 understand—firsthand—how critically important it is to be diagnosed as early as possible. Lifestyle choices, career and family planning, and the importance of health management can vastly change the course of the disease. Reducing exposure to environmental or occupational risk factors alone could extend life by years; aggressive treatment of infections and access to pneumococcal vaccines and flu shots can significantly affect the progression of the disease; and access to therapeutic dosing of augmentation therapy may well prove to be a bridge to future therapeutic solutions or cures. RTs see large numbers of COPD patients and would be in the best position to assist in our efforts to raise awareness of the need to test and identify alpha1 patients among that population.
RTs also can make a huge difference in implementing standards of care for alpha1 patients. After participating in the World Health Organization’s Symposium on AAT Deficiency in 1996, the Alpha-1 Foundation committed to promoting the development of new standards for the diagnosis and treatment of individuals with alpha1-antitrypsin deficiency. The Alpha-1 Foundation was a primary sponsor of the joint writing effort by the American Thoracic Society (ATS) and the European Respiratory Society to publish new standards. The standards for the diagnosis and management of individuals with alpha1-antitrypsin deficiency were published in the Blue Journal on October 1, 2003. One of the most significant findings of this evidence-based, peer-reviewed publication was the validation of a Category A recommendation for screening all individuals with COPD for alpha1.
Concurrent with the document preparation and review, which was chaired by James K. Stoller, MD, we initiated a two-phase trial to evaluate the most efficient methods of implementing an alpha1–targeted screening program in the COPD community. Mark Brantly, MD, director of our Alpha-1 Genetics Laboratory at the University of Florida College of Medicine, directed a statewide pilot screening program with funding from the state and the Alpha-1 Foundation. We tested several strategies and developed a model for the rollout of a National Targeted Detection Program (NTDP), which was launched in May at the ATS Conference in Orlando; our goal is to provide screening for alpha1 over the next 12 months for 25,000 individuals being treated for COPD. This targeted detection program will identify alphas, but it will be respiratory therapists who will help manage their care once they are diagnosed.
We are also using this document as a platform to address one of the biggest impediments we face: lack of awareness of alpha1. We developed an ATS-accredited CME course, based on the new standards. We collaborated with AARC to distribute more than 8,000 copies of the new standards to RTs by direct mail, and AARC subsequently accredited our CME course for CEU credits for RTs.
Our AlphaNet health management company, coordinating health services for more than 2,600 individuals with alpha1 in 50 states and Puerto Rico, has recently published a comprehensive Alpha-1 Disease Management and Prevention Program, which includes a 600+ page reference guide; ongoing outcome studies; and monthly communication with each “alpha” enrolled in the program. We are implementing disease management through the patient, as opposed to the classical implementation through health care providers. We clearly see the RT as a major participant in the health care team.
We are also developing educational programs that incorporate the expertise of the RTs and may expand the role of RTs in patient health management. We welcome your active participation and input.
These are but a few examples demonstrating the natural synergy between individuals with alpha1 and respiratory therapy professionals. Increased collaboration will directly support our mission to provide the leadership and resources to increase research, improve health, promote worldwide detection, and find a cure for alpha1-antitrypsin deficiency.
John W. Walsh is cofounder, president, and CEO of the Alpha-1 Foundation.
