Patients, providers face similar lobbying challenges

Sunday, April 30, 2006

CHICAGO - An estimated 1 million U.S. home respiratory patients are among the strongest allies oxygen providers have in conveying their value in the healthcare continuum, but to date they have largely been underused--and it's not because they don't want to fight for the cause.
"We're trying to spread the message [of home oxygen's importance] to anyone who will listen," said Jon Tiger, president of National Home Oxygen Patients Association. "Getting the word out has been a difficult task at times, but we have more power than we have exercised to date."
Tiger--a COPD patient who has been on oxygen for 10 years--is a charter member of the patient advocacy group, founded in 1997 to improve the lives of those reliant on supplementary oxygen. But just as HME associations struggle with low membership percentages, so does NHOPA.
"Our membership is about 600, which is a small number," he said. "We should have about 10,000."
Given that providers' and patients' fates are inextricably linked to potentially devastating regulatory proposals like the 13-month oxygen rental cap, it may seem curious that both sides haven't conducted more joint lobbying campaigns to state their respective cases. No one disagrees that working together is a sound idea, but neither side is convinced that it would make a difference when the delivery system is broken and policy-makers are unsympathetic about it.
"We're dealing with a group of individuals who can't know everything and it's not a big issue on their radar screens," Tiger said.
Both Tiger and fellow COPD patient Vlady Rozenbaum point out that a basic systemic flaw in home respiratory provision is that general practitioners--of whom many are not current on the latest technology--write approximately 80% of home oxygen prescriptions. Pulmonologists should be put in charge of those decisions, they said.
"GPs aren't the best informed about portables," said Rozenbaum, a COPD patient who founded the patient advocacy group COPD-Alert five years ago. "Because they aren't informed, they aren't prescribing them for patients. They're leaving it to the providers."
Tiger is even more succinct: "I don't want to take anything away from the GPs' capabilities, but they don't have the wherewithal to do this kind of business because they don't understand it."
A key component in demonstrating the HME provider's value is to show not only how home respiratory therapists help patients understand why they're on oxygen but also how RTs prevent hospital re-admissions. A recent survey of home oxygen patients by Lake Forest, Calif.-based Apria Healthcare confirmed that many home oxygen patients never see respiratory therapists and are often left in the dark about why the therapy is even ordered.
While Rozenbaum said he has access to an RT, Tiger said he has yet to see one.
What's more, Tiger said, he's received no instructions from his physician directly.
"I had some significant problems in my breathing test and the next thing I knew, everyone was gone," he said incredulously. "A young woman came in and told me she had orders to put me on oxygen. Imagine my surprise. The doctor told me nothing."
Despite setbacks, respiratory patient groups have proven to be effective lobbyists. The FAA policy allowing portable oxygen concentrators on flights is due in part to their influence, Tiger said.