The following websites focus on COPD, but they are full of useful information for those with ILD about oxygen equipment, traveling with oxygen and other supplemental oxygen topics.
Portable Oxygen: A User's Perspective
www.portableoxygen.org
National Home Oxygen Patients Association
www.homeoxygen.org
Emphysema Foundation for our Right to Survive
www.emphysema.net
Getting the right oxygen equipment for you takes time and effort. Find information and support from other oxygen users at a local Better Breathers group, Interstitial Lung Disease support group or pulmonary rehabilitation program.
People with special energy needs due to oxygen concentrators in the home may qualify for lower gas or electric rates. One example is PG&E's Medical Baseline Program.
Oxygen is an IRS-approved medical expense. Also, the cost of electricity used to operate your oxygen concentrator may be deductible. See IRS publication 502, Medical and Dental Expenses.
For elevations of cities throughout the world, see worldatlas.com.
The Food and Drug Branch of the California Department of Health Services regulates the quality, purity, labeling, manufacture, sale and advertising of oxygen for medical use and its delivery systems in accordance with the Sherman Food, Drug and Cosmetic Law (California Health and Safety Code Sections 26000 through 26851).
If you have concerns about unsafe or illegal practices by manufacturers or sellers of oxygen for medical use or its delivery systems, notify the following agency:
Department of Health Services
Food and Drug Branch
1220 S Street
Sacramento, CA 95814
(916) 445-6921
There are an estimated 1.5 million supplemental oxygen users in the U.S., although the exact number is unknown.
There is strong evidence that supplemental oxygen can improve overall health and quality of life. It's important that Medicare oxygen equipment guidelines reflect the needs of supplemental oxygen users. If you are unhappy with the current rules and regulations associated with supplemental oxygen equipment, you may write to your congressperson:
You can also follow and join the efforts of these advocacy groups:
Portable Oxygen: A User's Perspective
www.portableoxygen.org
National Home Oxygen Patients Association
www.homeoxygen.org
Emphysema Foundation for our Right to Survive
www.emphysema.net
The Coalition for Pulmonary Fibrosis
www.coalitionforpf.org
The Pulmonary Fibrosis Foundation
www.pulmonaryfibrosis.org
Reviewed by health care specialists at UCSF Medical Center.
This information is for educational purposes only and is not intended to replace the advice of your doctor or health care provider. We encourage you to discuss with your doctor any questions or concerns you may have.
Interstitial Lung Disease Program
400 Parnassus Ave., Fifth Floor
San Francisco, CA 94143
Phone: (415) 353-2577
Fax: (415) 353-2568
