CFPG Adult Cystic Fibrosis Center
CFPG ADULT CF PROGRAM
Welcome to the Adult Cystic Fibrosis (CF) Program at Central Florida Pulmonary Group. Our CF program provides comprehensive care for adults (ages 18 and over) with cystic fibrosis. Our CF clinic has been accredited by the Cystic Fibrosis Foundation since 1999. We are dedicated to providing you with excellent care by following the current Cystic Fibrosis Foundation’s treatment guidelines. Our main focus is providing you with the highest quality health care while preserving your lung function and quality of life.
Our Adult CF Program provides personalized care and supports our patients and families through a multi-disciplinary team approach. Our program brings together medical specialists to address your unique needs. Our entire staff has extensive experience working with adults with CF. Our healthcare team is recognized on a national level and participates in many committees, mentor programs, and conferences to improve the medical care of people with Cystic Fibrosis. We are committed to quality improvement and work on ongoing improvement initiatives with the Cystic Fibrosis Foundation and the Dartmouth Institute. The adult CF team includes:
CF Pulmonologists & Providers
Board Certified in Pulmonary Medicine and Critical Care Medicine
• Dr. Daniel T. Layish
• Dr. Francisco Calimano
• Dr. Hadi Chohan
• Aymara Del Pino, APRN
Clinical Director of Research and CF
• Kathleen Summo, RN, MSN, CNS, CCP
407.841.1100 Ext. 225
CF Clinical Coordinator
• Desiree Serr, RMA
407.841.1100 Ext. 158
• Candace Chemtob, RD
407.841.1100 Ext. 224
Social Worker/Mental Health Coordinator
• Heather Shaver, LCSW
407.841.1100 Ext. 224
CF Medical Assistant
• Elande Tulme, MA
407.841.1100 Ext. 107
CF Research Coordinators
• Kenneth “Bert” Kesser, RRT
407.841.1100 Ext. 118
• Troy Koenig, LPN
407.841.1100 Ext. 209
Our multi-disciplinary team meets no less than weekly to discuss our CF patients and share their assessments and concerns. For any questions, please call the Adult CF Clinic Coordinator at 407.841.1100 Ext. 158. Please remember that we require at least 48 hours to address prescription refills. CF clinic phones are forwarded to our Triage nurses phone lines 407.841.1100 Ext 123 on CF clinic days. Please allow the Triage nurses to assist you while we are caring for others during their clinic visits. We require at least 72 hours to return emails.
Our Adult CF Program provides comprehensive care, including, but not limited to:
• Chest x-rays
• Education: Patient, family, friends
• Scans: DEXA & CT
• Cultures: throat & sputum
• Pulmonary Function Testing
• Airway clearance techniques
• Close monitoring of nutritional status
• Emotional support and social services
• Pediatric to Adult transition management
• Access to patient support groups, assistance programs, waiver programs and CF community organizations
The CFPG Research Department is a leader in the field of CF clinical research. Working with the Cystic Fibrosis Foundation’s Therapeutic and Diagnostic Network we have conducted over 50 studies to advance the care of CF patients. Most recently, we conducted the ground breaking Trikafta research trials.
Your appointment will be held during our CF clinic. On that day you will meet the CF Clinic Coordinator, Registered Dietician, Social Worker, Respiratory Therapist, Medical Assistants, Research Coordinator (if applicable) as well as your CF Pulmonologist.
Your CF Clinic Coordinator will discuss your treatments and fully review your medication to determine the availability of patient assistance and support programs. Your Respiratory Therapist will have you perform complete pulmonary function testing and review your airway clearance techniques. Once you have completed your diagnostics testing your Registered Dietician will assess your diet and determine the need for dietary changes, enzyme dosing adjustment and supplements. Your Social Worker will help you resolve insurance issues, enroll you for the Florida Medicaid Waiver program and assist with referrals to other specialty practices as needed. Your dedicated CF Pulmonologist will spend as much time as you need to assess and discuss your health status and care plan.
*Please notify the CF Coordinator at 407.841.1100 Ext. 158 if you have MRSA or Cepacia.
PATIENT ASSISTANCE PROGRAMS
Click here for Cystic Fibrosis Links
Click here for Cystic Fibrosis Adult Care: Consensus Conference Report
OPPORTUNITIES TO DONATE
Cystic Fibrosis Foundation
The Salt Room- Salt therapy is the therapeutic use of natural salt in a simulated microclimate where pulverized salt is blown into the room for occupants to passively breathe in.
Lyndsey’s TLC Foundation The Florida Department of Health
Adult CF Waiver Brochure Boomer Esiason Transplant Grant
Health Well Grant Live 2 Thrive
Care Toward LTC Medicaid
The Cystic Fibrosis Scholarship Foundation
CF CareForward Scholarship
The Elizabeth Nash Foundation Scholarship Program
Boomer Esiason Foundation Scholarships
Cystic Fibrosis Foundation: Outstanding Partnership Award: Adult CF Program: 2014
Cystic Fibrosis Foundation: Outstanding Partnership Award: Adult CF Program: 2015
INC: Clinical Research Award: 2016
Cystic Fibrosis Foundation: North Central Florida Chapter Appreciation Award: 2018
Pediatric Pulmonary, Supplement 45, 2016:
QUALITY IMPROVEMENT PROJECT TO IMPROVE SCREENING PROCESSES FOR CYSTIC FIBROSIS RELATED DIABETES:
Chemtob, C. H., Layish, D., Calimano, F., Summo, K., Serr, D.
CF Center: Central Florida Pulmonary Group, Orlando, FL USA
Pediatric Pulmonology, Supplement 45, 2016: POPULATION PHARMACODYNAMIC MODELING OF DISEASE PROGRESSION IN CYSTIC FIBROSIS SUBJECTS: Hartman, S., Layish, D., Prately, R.E., Bredberg, U., Haseltine, E., Beusmans, J., Lesko, L. J., Trame, M.N.,
1. Pharmaceutics, University of Florida, Orlando, FL, USA
2. Central Florida Pulmonary Group, Orlando, FL, USA
3. Translational Research Institute for Metabolism and Diabetes, Orlando, FL, USA
4. Vertex Pharmaceuticals, Boston, MA, USA
Pediatric Pulmonology, Supplement 45, 2016:
PHASE 1 INITIAL RESULTS EVALUATING SAFETY, TOLERABILITY, PK AND BIOMARKER DATA USING PTI-428, A NOVEL CFTR MODULATOR, IN PATIENTS WITH CYSTIC FIBROSIS:
Mouded, M., Layish, D., Sawicki, G. S., Milla, C., Flume, P.A, Tolle, J., Vansaghi, L., Watson, C., Munoz, B., Bhalla, A., Ivarsson, M., Lee, P.
1. Proteostasis Therapeutics Inc. Cambridge, MA, USA
2. Boston Childrens, Boston, MA, USA
3. The Stanford Cystic Fibrosis Center, Stanford, CA, USA
4. Medical University of South Carolina, Charleston, SC, USA
5. Vanderbilt University Med Center, Nashville, TN, USA
6. Central Florida Pulmonary Group, Orlando, FL USA
7. Quintiles, Overland Park, KS, USA
Trikafta Information for our CF patients
Dear CF Patients:
The FDA has recently approved their new triple combination therapy for CF patients aged 12 years and older, with at least one F508del mutation. CFPG is excited to have a new therapy available to help more than 90% of people living with CF. We will work towards providing this medication as quickly as possible.
Please be aware that Trikafta is currently approved for patients having at least one ^F508 genotype along with any other second genotype. We certainly expect most people will want to start this exciting new medication, but the decision is up to you. If you have any questions or concerns, please speak with your CF provider at your next clinic visit.
CFPG is already working to help our CF patients who may qualify for this exciting new medication. Please see the situations below to see which applies to you.
- Had an office visit within the past four months.
- Had a Liver Function test within the past eleven months.
- Are already enrolled in Vertex GPS
CFPG will process your prescription. You do not need to come into the office. You only need to notify us if you are not interested.
- Had an office visit within the past four months.
- Have NOT had Liver Function tests within the past eleven months. &/or
- Are NOT enrolled in Vertex GPS
CFPG will send you the necessary paperwork to obtain your lab work &/or apply to GPS. Once these are complete, we will process your prescription.
- Have not had an office visit within the past four months.
You must have an office visit and complete any missing lab tests &/or Vertex GPS paperwork in order to complete the enrollment process
- You meet all of the above criteria BUT are satisfied with your current treatment regimen.
- Let CFPG know you are not interested.
- We are processing requests in alphabetical order and date of request.
- If you are not currently participating in the CF Registry Database, it will take us MUCH longer to access your missing information. Please consider participation in this valuable database as it helps CFPG help you quickly and efficiently.
- We currently have six CF clinics in January 2020 and available openings are filling up quickly.
- Unless you can afford to self-pay, please understand EVERY CF pt in the US will be applying to Vertex GSP (unless they are already approved) and we have no control on how long it will take Vertex to process your request for financial assistance.
- Pharmacies DO NOT have Trikafta in their formularies yet. This will contribute to wait time.
- Your insurance company MUST approve you to receive Trikafta. It is YOUR responsibility to follow up with your insurance carrier.
- More information is available at the websites listed below.
TRIKAFTA PATIENT BROCHURE
Click for Trikafta Brochure
TRIKAFTA GENERAL INFORMATION
FDA TRIKAFTA INFORMATION
VERTEX GUIDANCE & PATIENT SUPPORT (GPS) ENROLLMENT