I started the thread in the other portion of 360Social but decided it really needs to be here as we have heard there are increasing numbers of folks having trouble getting or keeping their desired oxygen system(s).
Jamie Sullivan of COPD Foundation (jsullivan@copdfoundation.org) is trying to collect information and the wonderful folks at 360Social are the best folks to help her. Below is the thread I copied & pasted from prior posting about how my DME is trying to take my liquid oxygen away and how we are fighting so I can keep it because that's the system my doctors and I believe are best for me.
HIcopd - Hawaii State Captain
Well, good news so far. On 7/20, received a letter from my O2 supplier that they were discontinuing my liquid O2 “in my region” and wanted me to switch to other options.
My MDs and I objected and to I notified our US Congressional Delegation for my state, sending them the letter and my MD’s certificate of medical necessity.
I received a call that day from one of our state US Reps’ staff person. He also spoke with Jamie Sullivan of COPD Foundation and others.
In less than a week, both my state’s US Reps signed letter asking my O2 supplier for a moratorium until we can convene a meeting with all stakeholders to get this resolved.
Just got my regular automated phone call from O2 supplier confirming regular delivery, so it SEEMS like I should be getting my O2 as usual on Wednesday, thanks to help from many people/orgs: my MDs, Jamie Sullivan, Sam Giordano, my US Reps Tulsi Gabbard & Ed Case & their staffers, Bill Clark, & Karen Deitemeyer. Also others have provided additional support, including many members of the American Thoracic Society.
Today, I was contacted by another staff member of Gabbard’s office. He said Medicare beneficiaries have the right to refuse to switch O2 systems unless patient and/or prescribed agree once the 5 year contract has begun. More about this will be posted on the US COPD Coalition website. (I’m not on Medicare, so that doesn’t apply to me. Not sure what the contract for me says but may track Medicare.)
12 hours ago
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Caroline,Mike Hess, RRT (State Captain, Michigan),Vinny M and 7 other people care about this
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Jamie SullivanKeep us posted Val. If any others have received notices that your liquid oxygen service was ending PLEASE let us know asap. You can email me at jsullivan@copdfoundation.org if you are willing to share your situation to help generate more support for the policy changes that are needed to stop this from happening! It is also helpful to know if your doctor has prescribed liquid oxygen but you have not been able to get it. Thanks all and thank you Val for being so proactive with outreach to Congress and others.4 hours ago
You,Caroline,Mike Hess, RRT (State Captain, Michigan) and 1 other person care about this- HIcopd - Hawaii State Captain
Yes, I've only been prescribed liquid oxygen so far by all my providers, but they did write me a prescription so I could purchase a portable oxygen concentrator so I can fly with it. The DMEs have different ways of trying to "work with" (trick) patients and providers.
My DME did say that they have other systems that I could consider (never naming brands nor models) and I thanked them but turned them down. They also called my HI pulmo and told him he can't FORCE them to deliver to me and that he HAD to change my Rx that day. I was able to convince my pulmo not to make any changes.
I sent them a letter asking them to specify precisely the brand, models, away time, weight, and other details about all the systems they propose to substitute for my current system. They have NOT made any reply to the letter.moments ago