FYI from the NHLBI Index

September 2003: Vol. 4, Issue 2
Constituents' Corner

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Coalition for Pulmonary Fibrosis Receives $60,000 to Advance Education Initiatives

Coalition for Pulmonary Fibrosis

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.
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American Thoracic Society (ATS) Public Advisory Roundtable (PAR) Members Discuss Barriers Faced by Patients Requiring Supplemental Oxygen During Air Travel

American Thoracic Society

At a recent meeting with the American Thoracic Society (ATS) Research Advocacy Committee, ATS-PAR representatives from the Alpha-1 Foundation, American Lung Association, American Sleep Apnea Association, LAM Foundation, 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

Making Arrangements

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.
Plan ahead. Most airlines request 2 weeks notice that supplemental oxygen will be needed although some will accommodate requests made only 48 hours in advance.
Get answers. If the ticket agent cannot answer all of your questions, speak to someone in the airline’s medical or special services department.

Traveling

Bring your nasal cannula. Some airlines provide only masks.
Confirm all arrangements 48 hours before your flight.
Arrive early. 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.

Article and tips contributed by: Dr. Vlady Rozenbaum, Moderator, COPD-Alert and
Ms. Sue Byrnes, Director, LAM Foundation.



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