Cynthia Brown, MD.
Director, IU Adult Cystic Fibrosis Program
Today is an exciting time to participate in the care of all patients with cystic fibrosis. I recall recently reading older medical textbooks that describe CF as the most common “lethal” genetic disease in the United States, and when I see my patients flourishing in their adult lives, I find it amazing to see how the disease has changed just a few decades. I completed both my residency and fellowship training at Johns Hopkins University. At that time, Adult CF Programs were still rather rare entities as the program was only established in 1999, the same year I began my residency. I credit the adult CF director there with inspiring me to consider CF care as part of my career. At the University of Virginia, I became co-director of the Adult CF Clinic in 2011. Care of adults with CF has become a true passion of mine. There is no more rewarding field in which to practice pulmonary medicine, and now is such an exciting time to practice as clinical research is altering the face of CF in so many ways. The main reason I love CF is the teamwork involved in being a good CF provider that starts with the patient at the center of care. No CF provider can work in a vacuum, and I love the multidisciplinary approach to CF care where we all partner with the patients to help them lead fulfilling and active adult lives. There is a long history of strong CF care at Riley Children’s Hospital and Indiana University, and I look forward to strengthening these relationships and our relationships to the CF community at large to be the primary source of care for all adult patients with CF throughout the state of Indiana.
Strenthening the Adult Cystic Fibrosis Program
Adults living with cystic fibrosis will soon outnumber children with the disease as median survival continues to rise. Best outcomes are achieved when patients receive multidisciplinary guidelines-based care in a Cystic Fibrosis Foundation-accredited program. We are privileged to be recognized as one of these programs, and we will be working closely with our colleagues at Riley to ensure an easy transition from pediatric care to the adult program. We are proud to have an adult CF program with a broad-based expertise to meet the challenge of caring for all aspects of health in patients with CF from diagnosis to advanced lung disease, including lung transplant. We will offer two full day clinics each week in order to meet the needs of our patients and are privileged to have access within Indiana University to experts in the care of CF patients with manifestations of the disease outside the lungs such as diabetes mellitus and liver disease.
Building the CF Team
Patients who receive care in our CF center should expect to have access to a multidisciplinary team with experience in the care of adult CF patients. A successful CF team includes close partnerships with nutrition, respiratory therapy, and social work. In addition, we are privileged to have outstanding pharmacists and a physical therapist with a special interest in CF. As those of you know who have been with the adult CF center at IU, I count myself very lucky to have the support of Jana Yeley, NP. She has been a stalwart of the program for the past decade and is the first point of contact for most of our patients. She brings a depth of knowledge and warmth to the team, and I look forward to continuing my partnership with her over the coming years. When I think about my ideal CF clinic, I see a team that functions well as one unit to ensure that our patients are meeting their health goals, and I will engage our institutional leadership to ensure that the needs of the CF patients are being met.
Partnering with Patients
Living with CF requires a strong commitment by the patient to his or her care, and finding ways for the treatments required for the disease to fit into daily life is an important part of care. Open communication between patients and their care team about what works and doesn’t work in their care plan keeps everyone working together for the common goal of preserving health and quality of life in CF. We partner with our patients in a variety of ways including Family Education Days and an Advisory Council. We hope to improve our communication and better serve the needs of our patients by improving access to information through web resources. Part of this process will be ensuring transparency about how well our center is performing in accordance to the standards set forth by the CF Foundation, and we plan to share this data with patients at Family Education events and appropriate web resources.
Advancing Care Through Research
Innovations in CF care have been occurring at a rapid pace the past decades with landmark studies involving ivacaftor for patients with the G551D mutation. These advances are bringing hope for a new day in CF care as many more medications are in development that will attempt to alter the basic protein defect of the disease. Indiana University is a partner of the CF Foundation in the Therapeutic Development Network, and I believe it is our responsibility as an academically-affiliated institution to offer our patients access to opportunities to participate in research trials. I plan to work closely with our colleagues in the Pediatric CF Center to ensure that all patients can contribute to this important endeavor. Without the participation of dedicated volunteers with CF, we will not be able to further advance our knowledge of the disease.
As I hope you can see, I am dedicated to providing adult CF patients with excellence in clinical care in all aspects of the disease and also to bringing innovative research to Indiana University. I look forward to the challenges of working within this busy program and welcome your comments on how to improve our service to our patients.
Cynthia Brown, MD