August-September, 2001 

Julie Feldman MPH RD, Clinical Dietitian

Protocol Drive Healthcare, Inc. (PDHI) announced on 7/11/01 that Solvay Pharmaceuticals has provided an unrestricted grant to support mycysticfibrosis.com, an interactive personalized care Web site devoted to helping people better manage CF.  This is the first interactive web site that focuses specifically on CF while providing patients with monitoring tools, information, and online access to healthcare professionals.  The web page will have everything from Diaries, Graphs and Reports on personalized information, Education, and a Reference Library.  We are looking forward to its launch and enhancement of self management that it may bring.

New Drugs

Polydex Pharmaceuticals Ltd. announces a breakthrough in development of Usherdex, a carbohydrate technology that is expected to be used in alleviating breathing difficulties in patients with CF, COPD and other lung disorders.

The mechanism of this product has not yet been released.  In animal studies, an aerosol mist of Usherdex was administered to rats and dogs with favorable results.  

Clinical Trials 

An independent Data and Safety Monitoring Committee has recommended the continuation of Targeted Genetics US phase II trial to assess aerosolized tgAAV-CF in CF patients.  Until now, no serious adverse events have been related to this form of gene therapy targeting the transmembrane conductance regulator.  More work is also being done on creating an adeno-associated vector to deliver the CFTR gene into the body.  WOW!

Gene Screening

Screening for single gene defects has been achieved by Australian researchers who have developed a reliable DNA fingerprinting test that can be used to detect incidences of Down's syndrome in embryos before they are transplanted in the womb during IV fertilization.  This technique far surpasses existing technology when screening for single-gene mutations including cystic fibrosis.

Lung Transplant Data

Information copied from News You Can Use: America's Best Hospitals 2001 U.S. News and World Report 7/23/01

Lung transplant only  now becoming common, can buy years of life for people suffering from emphysema, CF or pulmonary fibroids.

The Numbers:

People on waiting List on 1/1/00 = 3,429

People added to waiting list in 2000 = 1,977

People who got transplanted in 2000 = 962

Busiest Hospital in 2000

Duke University Medical Center

Barnes-Jewish Hospital

Cleveland Clinic

U of Michigan

U of Alabama Hospital at Birmingham

U of Pittsburgh Med Center

F.G. McGaw Hospital at Loyola University

Clarian Health Partners, Indianapolis

Fairview-University Med Center, Minneapolis

Hospital of the University of Pennsylvania

Although I haven't heard many complaints from most of you, I always want to take a moment and remind you how important your diet is to your lungs!

A new concept to think about when you think about diet (which I know you all think about) is how colorful is your plate.  The American Institute for Cancer Research has a new campaign entitled: Sample The Spectrum.  By making sure that your plate is colorful (and not just brown), you guarantee that you are filling your body with plenty of fiber and antioxidants found in fruits and veggies.  So next time you sit down to eat, notice the color of your plate.  When in doubt add some color!  (and I am not talking about maraschino cherries or slurpies!)