USF Health pediatric pulmonology has met the extensive requirements to become a cystic fibrosis core center, a designation that offers funding opportunities for research and drug development and access to large data sets related to the clinical care of patients with cystic fibrosis.

“We have an extremely committed team and with the support provided by the CF Foundation and our USF institution, our patients are living happy and healthier lives,” said Marisa Couluris, DO, division chief of USF Health pediatric pulmonology and associate professor for USF Health Morsani College of Medicine. “With new programs involving transition plans for pediatric to adult centers, lung transplant research, mental health support and real time research guidelines only possible with registry data which all the centers provide, patients are living longer, and healthier lives.”

USF Health pediatric pulmonary’s Jason C. Walsh, FNP, Yanerys Colon-Cores, MD FAAP, and Marisa Couluris, DO.

The Cystic Fibrosis Foundation has accredited more than 130 CF care centers nationwide and about 15 of those are in Florida. According to the Cystic Fibrosis Foundation, “the CF Foundation’s care center network combines clinical research with medical care best practices and has been cited by the National Institutes of Health as a model of effective and efficient health care delivery for a chronic disease.”

The requirements to become a core center starts with the care inside the center itself and takes into account the number of patients seen and a review of the registry or clinical data made up of those patients. Then the CF Foundation considers the institution’s location to ensure it has supportive teaching and resources to initiate quality programs, can meet research requirements, and has the multidisciplinary team in place, including a hospital supportive program. Tampa General Hospital’s Adult Cystic Fibrosis Program is also certified and supported by the CF Foundation and TGH’s Lung Transplant Program specializes in lung transplants for adult patients with cystic fibrosis. After application review, the CF Foundation conducted a site visit with two leading experts in the field to review USF Health’s pediatric pulmonology services and support efforts to ensure that high-quality specialized care is provided to people living with CF.

The benefit of becoming accredited by the CF Foundation is the funding, which is used to support research and drug development and the capture and collection of data of the clinical care of patients. This work helps to promote individualized treatment plans and ensures high-quality, specialized care by USF Health’s multidisciplinary team. USF Health pediatric pulmonology’s team is made up of health care providers, nursing staff, registered dieticians, social workers, respiratory therapists and research and clinic coordinator support. Everyone on the team works together for the same goal, to find a cure and provide all people with this disease the opportunity to lead full productive lives, Dr. Couluris said. It was only 70 years ago that a child living with CF rarely lived long enough to attend elementary school and now, with the advancements in specialized CF care, that child can fulfill their dreams of having a career and their own families.

“I have been caring for patients with CF at USF Health for over 15 years and once I became the division chief, it was the goal of our team to become a core center,” Dr. Couluris said. “With the support of our institution both at USF and TGH, we were able to build the team to provide the degree of high-quality, specialized care needed to be a core center. Now the next goal is to advance the research in CF care to find that cure. And then I can retire.”

What is Cystic Fibrosis?

Cystic Fibrosis is a rare genetic disease that causes the mucus in organs, such as the lungs, pancreas and liver, to become thick and sticky. The mucus can clog the airways and trap germs, as well as cause malnutrition and liver disease. According to the Cystic Fibrosis Foundation Patient Registry, CF is found in more than 30,000 people in the U.S. and more than 70,000 worldwide. Thanks to the advocacy of the CF Foundation, every newborn nationwide is now tested for CF. Cystic Fibrosis is a progressive disease, so with early detection and

treatment, CF survivors have a longer life expectancy and a better quality of life. There is no cure for CF, only significant progress in the treatment of the disease.

What are the symptoms of Cystic Fibrosis?

The type and severity of symptoms are different from person to person. People with CF can have a variety of the following:

• Very salty-tasting skin
• Persistent coughing, at times with phlegm
• Frequent lung infections, including pneumonia or bronchitis
• Wheezing or shortness of breath
• Poor growth or weight gain in spite of a good appetite
• Frequent greasy, bulky stools or difficulty with bowel movements
• Male infertility

For an appointment with USF Health Pediatric Pulmonology, call 813-259-8700

Dr Kapil Patel was recruited from Stanford University known for its preeminent center

Pulmonologist Kapil Patel, MD, arrived at USF Health full-time Sept. 1 with one overarching goal in mind: to help lead and strengthen the Lung Transplant Program at Tampa General Hospital while strategically working to create a Center of Excellence for Advanced Lung Disease.

He came from Stanford University Medical Center, home to one the few such specialty pulmonology centers in the United States, which is known for its exceptional patient outcomes and consistently ranked by U.S. News & World Report as one of the best in the nation.

Pulmonologist Dr. Kapil Patel was recruited to the USF Health Morsani College of Medicine from Stanford University Medical Center.

“Dr. Patel’s recruitment is significant for USF Internal Medicine, the patients of USF Health and Tampa General Hospital and the community at large. His move from Stanford University to head the lung transplantation program is a landmark, making this the first solid organ transplant program to be part of USF in 35 years,” said John Sinnott, MD, chair of the Department of Internal Medicine, USF Health Morsani College of Medicine. “Dr. Patel’s vision for a center for advanced lung disease will place USF and Tampa General at the forefront of caring for patients with lung diseases in the United States.”

A center like the one at Stanford promotes continuity of care, allowing patients to be conveniently treated in one place by physicians who subspecialize in complex lung disorders, while cohesively providing the latest advances in medical and surgical care, said Dr. Patel, assistant professor of medicine in the Morsani College of Medicine’s Division of Pulmonary, Critical Care and Sleep Medicine and medical director for lung transplant, interstitial lung disease and adult cystic fibrosis.

“As you bring academic research to the forefront, it also opens opportunities for patients to participate in clinical trials that can afford alternatives to treatment they may not otherwise receive elsewhere,” he said.

Dr. Patel most recently directed the Stanford’s Interstitial Lung Disease (ILD) Program, one of the arms of the medical school’s Center for Advanced Lung Disease. He helped build physician referrals to Stanford’s ILD program from 100 to more than 200 in just over two years.

Providing integrated subspecialty care for complex lung diseases

Dr. Patel says he was attracted to USF Health by the opportunity to serve as medical director of an academic-affiliated lung transplant program and to build upon the solid foundation laid by Tampa General’s transplant team to create what could be Florida’s first center for advanced lung disease.

He plans to work with colleagues in USF Health Internal Medicine and Tampa General over the next several years to develop a center of excellence serving as the umbrella for four interconnected programs:

• Lung Transplantation: Tampa General already has an active program accredited by the United Network of Organ Sharing – one of five in Florida – and has performed more than 480 total adult lung transplants (single and double) since 2002. The program’s one-year patient survival rate of more than 91 percent and three-year survival rate of more than 71 percent both exceed national survival rate statistics. Dr. Patel plans to selectively grow a larger program.

“Selective is the way to go to do the right thing for patients. It is critical to identify appropriate candidates in need of transplant and to understand the limitations to transplant, so you do not push the limits too far,” he said. “We want to be confident that the surgery will go well, so the patient leaves the hospital with a new life.”

Since arriving here, Dr. Patel has worked closely with USF Health-affiliated cardiothoracic surgeon Christiano Caldeira, MD, of Florida Advanced Cardiothoracic Surgery, who serves as surgical director of the heart and lung transplant programs at TGH. They take donor calls together, jointly decide which donor organs are the healthiest for recipients, and co-manage lung transplant patients in the intensive care unit (ICU).

Dr. Patel with Nicole Davis, RN, a lung transplant coordinator at Tampa General Hospital.

• Interstitial Lung Disease, or ILD (also known as pulmonary fibrosis): This new program would manage the care of patients with a group of lung disorders causing tissue deep in the lungs to progressively stiffen and scar, which affects the ability to get enough oxygen into the bloodstream. Currently, Dr. Patel said, Florida has no ILD program certified by the Pulmonary Fibrosis Foundation (PFF) Care Center Network. Dr. Patel will lead an initiative by USF and TGH to establish the first.

• Cystic Fibrosis: Cystic fibrosis is an inherited disease that causes thick mucus to build up in the lungs, leading to repeated, serious lung infections. The Cystic Fibrosis Program at TGH is the largest adult program in the state certified and supported by the Cystic Fibrosis Foundation.

• Pulmonary Hypertension: USF Health pulmonologist Ricardo Restrepo-Jaramillo,MD, assistant professor of medicine, specializes in pulmonary hypertension – high blood pressure that occurs in the arteries that go from the heart to the lungs and may eventually lead to heart failure. He will become director of the new USF pulmonary hypertension program at TGH, Dr. Patel said.

Lung transplants are typically performed for people likely to die from lung disease within one to two years, when other treatments like medications or breathing devices no longer work, according to the National Heart, Lung and Blood Institute. ILD and cystic fibrosis are both conditions accounting for the most lung transplants nationwide, Dr. Patel said, with pulmonary hypertension affecting a smaller population of patients needing transplants.

Collaborating with community physicians

To create an integrated center, Dr. Patel plans to bring several pulmonologists with research as well as clinical expertise into the lung transplant program he directs, as well as recruit subspecialty directors for the ILD and cystic fibrosis programs. He will also add nurse practitioners to a team already supported by TGH nurse coordinators, respiratory therapists, social workers, dietitians and a pharmacist.

“When you manage patients with advanced lung disease, it takes a multidisciplinary team of professionals skilled in pre and post-transplant,” he said. “These are patients with complex conditions who need a lot of support and coordination,”

Dr. Patel sees patients at the Cardiac and Lung Transplant Clinic based at Harbourside Medical Tower.

More immediately, though, he is focusing on selectively increasing the referral base of patients by meeting with community physicians across the Tampa Bay region and seeing established pre-transplant patients in the clinic at Harbourside Medical Tower, Tampa General campus.

“I want doctors in the community to know that we are here to collaborate in the care of patients with advanced lung diseases,” Dr. Patel said. “Our availability is a priority, and ensuring the shortening of turn-around times for initial clinic visits is crucial, so that patients referred to the USF-TGH program are evaluated for medical care or transplant within weeks, not months. When someone needs a transplant, they need to be seen yesterday, and we work to intervene early.”

Advances in pulmonary transplant treatment

Over the last decade, advances in surgical techniques and significant improvements in post-operative care have contributed to improved survival of pulmonary transplant patients.

“We’ve gotten better at understanding what it takes to get these patients through transplants with fewer complications,” Dr. Patel said. “Once you get patients through the ICU following transplant, their chances of recovery and surviving a year or more out are much better.”

Medical therapy has also improved. For example, in 2014 the FDA approved the first medications (pirfenidone and nintedanib) to treat the most common type of pulmonary fibrosis, known as idiopathic pulmonary fibrosis (IPF). Until then, lung transplant was the only option for these patients, said Dr. Patel, who at Stanford led several site clinical trials testing the effectiveness of drugs for IPF.

Dr. Patel received his MD degree from the Medical University of Lublin in Poland. He completed a fellowship in pulmonary and critical care medicine at the University of Vermont and a dual heart-lung and lung fellowship at Stanford University Medical Center. He worked in private practice in Baltimore as well as holding faculty positions at the University of Vermont College of Medicine, the University of Maryland Medical Center, and Stanford.

Dr. Patel is a member of the American College of Chest Physicians and the International Society for Heart and Lung Transplantation.

A USF-TGH Center for Advanced Lung Disease won’t happen overnight. But Dr. Patel is confident that the vision can become a reality one purposeful step at a time.

“That’s why I came here,” he said. “We have a strong foundation and the pieces to grow.”

Photos by Eric Younghans, USF Health Communications and Marketing