FYI from the NHLBI Index
September 2003: Vol. 4, Issue 2
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Coalition for Pulmonary Fibrosis Receives $60,000 to Advance Education Initiatives
In May, the Coalition for Pulmonary Fibrosis (CPF) received a $60,000 contribution toward its efforts to educate patients and professionals about idiopathic pulmonary fibrosis (IPF).
Now, only four months later, they are conducting a national survey of patients who have IPF to increase
understanding of individual differences in detection, diagnosis, and treatment. Survey data will be
examined to identify delays between symptom onset, diagnosis, and management and to characterize IPF
patient needs. By quantifying patient experiences, the CPF expects to enhance its ability to convey
the IPF community’s concerns to healthcare professionals and others who can improve patient care.
Survey results will be announced in December.
As part of the survey, the CPF also is creating one of the largest registries of IPF patients
in the United States. The CPF has enrolled more than 600 patients and expects to enroll another
700-900 before the project is complete. The CPF also plans to partner with other organizations in
the IPF community to compile a single, national registry of IPF patients in the hope that access
to patients will advance research efforts to find a cure.
IPF is a disease of inflammation that results in scarring of the lungs. It affects
more than 80,000 Americans and is difficult to diagnose. For more information on
IPF or on CPF programs, visit the CPF Web site.
Article contributed by:
Mr. Mark Shreve, Chief Operating Officer, Coalition for Pulmonary Fibrosis.
American Thoracic Society (ATS) Public Advisory Roundtable (PAR) Members Discuss Barriers Faced by Patients
Requiring Supplemental Oxygen During Air Travel
At a recent meeting with the American Thoracic Society (ATS) Research Advocacy Committee,
ATS-PAR representatives from the
American Lung Association,
American Sleep Apnea Association,
Pulmonary Fibrosis Foundation,
Pulmonary Hypertension Association, and
Sarcoidosis Research Institute
provided insights into the barriers and challenges faced by travelers who need supplemental
oxygen when they fly. Discussion focused on changes that the airline industry, or
individual companies, could make to ease travelers’ burdens.
Whereas the major issues for patients who travel by car, train, or bus are having
enough oxygen containers available for the trip and arranging for a commercial oxygen
provider to deliver oxygen to their destinations, air travel is much more complicated.
Airlines prohibit passengers from using their own oxygen equipment on planes and charge
a fee for in-flight supplemental oxygen, which is covered by few private insurance
companies and not at all by Medicare. They also require that patients make separate
arrangements, which entail additional costs, for supplemental oxygen during layovers
if patients are not traveling on direct flights. Overall added expenses can range from $50 to $1500.
An additional problem encountered by many patients is the risk that a flight may not be equipped
to provide supplemental oxygen even though the traveler provided the required documentation and
gave the airline sufficient notice. Because flying without supplemental oxygen is not an option,
such an oversight can jeopardize a person’s entire business trip or vacation.
The ATS-PAR provides the society with a patient perspective on pulmonary and critical care medicine,
education and advocacy opportunities, and research needs. It serves as the bridge between
the ATS and organizations that represent people affected by lung diseases and breathing
disorders. For more information on the ATS-PAR,
visit the American Thoracic Society's Web site.
Tips for air travelers requiring supplemental oxygen
|Travel on non-stop or direct flights.
Because many airlines base their oxygen
charges on the number of segments in a trip, using non-stop or direct flights
may save money. If you need oxygen service on the ground but have a direct flight,
you may be able to stay on the plane during stops in order to receive a continuous
supply of oxygen.|
|Find out what equipment is available.
Equipment varies, even among
planes in the same airline. Verify that your prescribed flow rate can be provided.
On most airplanes, supplemental oxygen can be used only in certain seats. |
|Arrange for oxygen on the ground.
Airlines do not provide supplemental oxygen
service in airport terminals.|
|Shop around for the best total price.
Charges for supplemental oxygen vary by
airline and by oxygen supply companies that service airports. If an oxygen company
representative needs to meet your plane, you may be charged more if you travel outside
of normal business hours.|
Most airlines request 2 weeks notice that supplemental oxygen will be needed although
some will accommodate requests made only 48 hours in advance.|
If the ticket agent cannot answer all of your questions, speak to someone in the
airline’s medical or special services department.|
|Bring your nasal cannula. Some airlines provide only masks.|
|Confirm all arrangements 48 hours before your flight.|
Unfortunately, mistakes happen. If last-minute arrangements have to
be made because of miscommunications among the reservations agent, the medical office, and the
ground crew, arriving 90 minutes or more before your flight is scheduled to leave can give the
airline a chance to obtain and install the oxygen tank so you can travel as planned. |
|Carry extra copies of your doctor’s letter.
The airport First Aid Station may have
oxygen available if you have an unexpected layover
or get stranded, but you will need to
provide your doctor’s instructions.|
|Get help. Travel is tiring;
just because you can walk the length of the terminal, doesn’t mean
you should. Don’t hesitate to use the airport's wheelchair services,
baggage assistance, and mobile carts. Carry small bills to tip service providers.
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