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Cystic Fibrosis Care Center
doctor and nurses Check here regularly for news from the North Shore-LIJ/Cohen Children's Medical Center Cystic Fibrosis Center team.

Get Your Flu Vaccine

It's flu vaccine time again - see your primary doctor, or make your quarterly appointment with your team at the CF Center, and get vaccinated immediately.

Allergy Alert Reminder

It is spring again- finally - patients with allergies should make sure they resume their prescribed allergy meds and check their Epi-Pen supply to make sure they are not expired & remember to use sunscreen

New Infection Control Guidelines

As of November 1, 2014, both the adult and pediatric CF Centers at North Shore-LIJ will be following the new infection control guidelines. Please watch your mail - you will be receiving a letter outlining the changes implemented. You can learn more about the new guidelines at cff.org.

D68 Rhinovirus Update - Stay Protected

The D68 rhinovirus has been seen in the Long Island area and many patients have noted an increase in their pulmonary symptoms if they get the virus. The nasal swab that is used at Cohen Children's Medical Center and North Shore-LIJ tests for this virus as part of the enterovirus/ rhinovirus group but not for this specific virus. The Dept. of Health of NY State and the Centers for Disease Control are able to subtype if necessary. Patients can expect to increase their respiratory care: nebulizer treatments, airway clearance and possibly antibiotics. Prevention is the best rule of thumb! Patients and parents are reminded to use good hand hygiene especially before meals, try to avoid obviously sick people/ exposures, and wear a mask in the Center. Get your flu vaccine, hydrate, eat well and get plenty of rest, and be adherent with your treatment to help to avoid illness.

Team Announcements

Your CF Team is Going to Washington, D.C.
Dr. Joan Germana, Li Chen, NP, Susan Galvin, RN and Terri Mizerak of the North Shore-LIJ/Cohen Children's Medical Center Cystic Fibrosis Center are attending the CF Therapeutics Development Network Spring meeting in Washington D.C. The Cystic Fibrosis Therapeutics Development Network (TDN) is the largest cystic fibrosis clinical trials network in the world. The TDN brings together experts from across the United States to evaluate the safety and effectiveness of new CF therapies through clinical studies. There are many new trials that are occurring in CF: Some are gene mutation-specific medications, new anti-inflammatory medications, new pancreatic enzyme replacement therapy, and new anti-infectives. The North Shore-LIJ/Cohen Children's Medical Center is a TDN designated research site. When enrollment opens, some trials will be held here at NS-LIJ and others at TDN sites in the US and Europe. Call or ask us at your next appointment about the studies, or check the CFF and TDN websites.

Susan Galvin, RN & Dr. Germana will once again participate as part of the CF Cycle for Life team representing NS-LIJ CF Centers at the 5Boro Bike Tour, May 3rd — 40 mile bike ride starting in Manhattan & moving through the Bronx, Queens, Brooklyn & over the Verrazano Bridge, finishing in SI. Hope to see you along the way!

Great Strides: May 31 at the Holtsville Ecology Center or June 7 at NYIT in Old Westbury
Join our team, create your own, or donate to support this great cause. Walk day is a fun, family-oriented event with a healthy 5K walk, children's activities, food and festivities. Learn more and register at CFF.org.

Cycle for Life: October 3 Splish Splash, Calverton
Come ride with us! CF Cycle for Life is a fully-supported ride with route options of 32, 62 & 100 miles. From breakfast to our cycle post party, you can enjoy fully stocked rest stops every 10-12 miles, bike mechanics for bicycle maintenance and repair, ride marshals to cheer you along the way and plenty of support vehicles to help you complete the ride. This unique event empowers participants to take action and demonstrate their fight in finding a cure for cystic fibrosis in a tangible, emotional and powerful way. For riders 16 and older. Learn more or register at CFF.org.

The CF center will hold MEET and GREET nights for parents of people with CF who are 16 to 17 years old and presently being followed by pediatric CF. These meetings will take place throughout the upcoming year and are a chance for parents to meet with the adult and pediatric teams before transferring care to the adult side. The next meet and greet will be held on Thursday, September 25, 2014 at the Adult Center, 410 Lakeville Rd, Suite 104, New Hyde Park, NY 11040. Look for more announcements.

FDA approves TOBI Podhaler to treat a type of bacterial lung infection in cystic fibrosis patients
The U.S. Food and Drug Administration today approved TOBI Podhaler (tobramycin inhalation powder) for the management of cystic fibrosis patients with Pseudomonas aeruginosa, a bacterium that causes lung infections.

Cystic fibrosis is a genetic disease that affects about 30,000 pediatric and adult patients in the United States. Cystic fibrosis causes the body to produce thick, sticky mucus that builds up in the lungs and blocks airways. The buildup of mucus makes it easy for bacteria like P. aeruginosa to grow and cause a chronic lung infection that, over time, can severely damage the lungs. Many patients with cystic fibrosis are treated with antibiotics using a nebulizer machine.

TOBI Podhaler, a plastic, handheld inhaler device, contains a dry powder formulation of tobramycin, an antibiotic used to treat P. aeruginosa infection. The powder is inhaled twice daily using the Podhaler device for 28 days. Patients should then stop TOBI Podhaler therapy for 28 days before resuming again.

"Today's approval broadens the available delivery mechanism options for patients with cystic fibrosis who require treatment for P. aeruginosa," said Edward Cox, M.D., M.P.H, director of the Office of Antimicrobial Products in the FDA's Center for Drug Evaluation and Research. "This product is the first dry powder antibacterial drug delivered with a handheld dry powder inhaler."

TOBI Podhaler's effectiveness was established in a study of 95 pediatric and adult patients with cystic fibrosis. All patients were 6 years of age or older and infected with P. aeruginosa. Patients were randomly assigned to receive TOBI Podhaler or a placebo for the first 28 days of the study. All patients then received treatment with TOBI Podhaler for the remainder of the study.

The study was designed to determine the improvement in lung function by measuring the change in forced expiratory volume in one second (FEV1). Patients treated with TOBI Podhaler experienced a statistically significant increase of 12.5 percent in FEV1 compared to 0.09 percent in patients treated with placebo. Additional data supporting safety and effectiveness were available from other studies enrolling 487 patients.

Common side effects reported in patients treated with TOBI Podhaler during the clinical studies included cough, including a cough that produces phlegm or mucus; coughing up of blood (hemoptysis); lung disorder; shortness of breath; fever; mouth and throat pain; changes in voice volume or quality (dysphonia); and headache.

TOBI Podhaler is marketed by East Hanover, N.J.-based Novartis.

For more information:

FDA Approved Drugs: Questions and Answers

NIH: Cystic Fibrosis

Listen to Dr. Germana on
Dr. Joan Germana was interviewed on Island Outlook for the Long Island Radio Group. The interview aired on WHLI, WKJY, WBZO and WIGZ on April 29, 2012.

Steven and Alexandra Cohen Children's Center/Long Island Jewish Medical Center honored at the North American Cystic Fibrosis Conference.
Steven and Alexandra Cohen Children's Center/Long Island Jewish Medical Center was honored at the North American Cystic Fibrosis Conference, being named one of eleven centers to earn the 2010-2011 Quality Care Award. These awards honor centers that excel at the following quality improvement performance standards: Award
  • Actively uses clinical outcomes data to identify opportunities for improvement and documents results of improvement efforts.
  • Aligns improvement efforts to result in measurable improvement in important clinical outcomes.
  • Consistently and actively involves patients and families in identifying, designing and/or implementing improvement efforts.
  • Employs innovative strategies to improve care processes and outcomes.
  • Implements system changes that result in high reliability of care processes.
Learn more at the News and Events section on the CF Foundation's website. You can read the full article in the CFF Winter Highlights newsletter, here.

Patient Assistance Resource Library

To help you navigate the complex world of health insurance and healthcare coverage, the CFF Patient Assistance Resource Library (https://www.cff.org/Assistance-Services/Insurance/Your-Insurance-Plan/Find-Resources-CF-Foundation-Compass/) offers a range of useful information, including:
  • Sample letters of medical necessity and prior authorization;
  • How-to guides to navigating common insurance obstacles;
  • Templates for insurance appeals, exceptions and reconsiderations;
  • CF care guidelines;
  • Evidence-based medical journal articles; and
  • White papers for medical professionals.

Mother of CF Patient Receives Prestigious Recognition
Maryann O'Mahony is the recipient of 2010 Long Island MVP award from the Greater New York Chapter of the Cystic Fibrosis Foundation. Many thanks to Maryann for her tremendous work in CF, and congratulations on this well-deserved recognition.

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