Improving O2 Access: We Need Your Help

Posted on May 06, 2016 |

We need your help with a very important study! With changes to Medicare supplemental oxygen reimbursement, it has become vital that we document the importance and clinical significance of mobility for lung impaired patients. As a consequence of competitive bidding, new reimbursements for supplemental oxygen are now dictating which oxygen devices are being made available to Medicare recipients, often restricting patients to be forced to transport large e-cylinders. The result is that patients using supplemental oxygen are experiencing severe loss of mobility impacting their quality of life and health outcomes.

supplemental O2 and COPD In basic terms: we are going back to a 1970’s model of oxygen delivery that is restricting patients to the confines of their home.

The link below is a survey that aims to document the impact of transporting large cylinders of oxygen will have on our community. To date there is no research that illustrates the obvious fact that carrying or transporting weight causes desaturation in lung impaired users. This of course might seem obvious to us, but has been largely ignored by Medicare who states they require clinical data before they can accept this actually occurs.

We ask all community members to click on the link below and fill out the survey. We also ask that you share the survey on any social media you may be a part of. We NEED this information in our effort to force change in a damaged system that puts money over patient welfare. If we do not reverse the impacts of this flawed policy, the health and wellbeing of our community will suffer for many years to come!

Please click here to make your voice heard.

20 Comments

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Sammi

Although I do not yet require supplemental oxygen, I took care of my husband during his illness, & he had those large tanks at home. He used the smaller tanks for "travel", but they were still cumbersome to roll around. (Especially when he was no longer well enough to walk.)
There will come a day, I'm sure where I will require O2, but I must postpone it as long as possible because of the negative consequences in my husbands life.
I could not answer the survey for me, personally, but my aversion to Medicare's plan should be noted in your results
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valiejean

I have been carrying around C size cannisters in a backpack for a decade now. I am very severe COPD. If I have to start using the E size it will severely limit my ablility to get around outside the house as I have very severe osteoritis also and can't lift them. The backpack is a life safer as it helps me to maintain balance and frees up my hands while walking and doing pulmonary rehab. I have tried Personal Oxygen Delivery systems and they do not put out the quality/ amount of oxygen that I require. I am very concerned that Medicare has been fighting the payment to Lincare (my provider) for a decade now. This is a life or death situition and if I am forced to stay at home on my oxygen concentrator I will not last long.
I hope the powers that be can fix this unjust system. If not for the work I did when i was young wiring the machines that made computer chips we would not be using computers
Bless all with this horrific disease and pray a cure is found to help.
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grammysue1

I also am not on O2 yet but see the day coming. My partner had severe COPD and was oxygen dependant. Even though he had a concentrator we had to often carry the tanks as the other only lasted about an hour. He had to carry a bag and it was very hard for him. I really hope they do not do away with the portable systems I see today because I surely will become housebound. I could not answer the survey but surely hope many others will.
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Breathe

I think it sucks how expensive oxygen is. Really people? If you had to be on oxygen for one day ,you would find out just how awkward it is to do anything lugging around a big hudge oxygen tank. Especially,hard for oxygen deprived, as we feel weak and tired to begin with. Think. If this was your mother, sister... would you want her to have to pack that big tank around everywhere she goes? , Oh and not be able to afford food , clothing or housing because it's so expensive? People on oxygen, need it to survive.
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bunnymusic60

I wish everyone could be as lucky as I am. Because I was already on liquid O2 when they passed that ridiculous competitive bidding my provider has to continue to provide me with it. It doesn't need electricity and my portable can last 7 hours on 4 lpm on demand. It is so not fair to people on oxygen to have to deal with this. Some of those concentrators are so heavy you have to wheel them around. The competitive bidding has taken the ability to get around from those of us who use oxygen. It is so unfair. But not until the people who make these laws have relatives needing oxygen will they ever realize what they've done!
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HIcopd - Hawaii State Captain

I have been prescribed liquid oxygen but am dreading having to fight to get it. I have already been warned it will be a difficult and tiring battle that I probably will not prevail in.

IMHO, liquid O2 is the best and lightest form of O2 for most patients. There would be better mobility and more widespread use it it was more readily available. It feels we are going backwards rather than forward in treating patients. This greatly saddens and infuriates me.

I have completed the survey and at the SF American Thoracic Society meeting, Jean and I met with COPD Foundation, AARC, Medicare contractors, nursing, and other folks about the challenges of patients getting supplemental oxygen.
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- Good luck to all of you on LOX. It is my understanding some areas are dropping it all together as of July 1.
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- bunnymusic60
  
  My very best wishes on getting your liquid. We should ALL be able to have it.
  
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- Ken W
  
  I hope you are successful, no question it is the best alternative. If nothing else it should continue to be offered even if it has a higher co-pay. To simply eliminate it is crazy.
  
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- bunnymusic60
  
  If you are in the NJ, NY, Pa, or OH area Community Surgical and Pharmacy carries liquid. They have a few patients who use it, including me. Otherwise I wish you the best luck getting it. You are right that it is the best and lightest form and lasts the longest. We really need some fighters for this. I used to go to DC to advocate but can't go there anymore because nobody anywhere near there carries liquid. I wish every senator and every congressman would have someone in their family needing oxygen because they just might learn about the differences between the different kinds. Somehow we have to let the government people know how much of a difference there is!
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LUANNSPIRIT

I was put on liquid oxygen about 6 months because I need 6 Lpm. The green tanks I call "scud missles" dont last long enough. Even my companion T at that level only lasts an hour and a half when filled with the liquid oxygen. 3 of those portables though, allows me enough time to go the 70 miles each way to see my mom, or go to a movie. I even was able to get a car unit to take on a road trip to fill my portables crom and use my concentrator in hotels. Most of the companies I called recently to inquire about having my car unit refilled (at my own expense where my oxygen company does not have branches) have said they are doing away with liquid oxygen because of the affordable care acts bidding process and lack of ability to make any profit. At this rate, I soon may never be able to leave my house. There are no portable concentrators that can do 6+ Lpm of continuous oxygen. I rarely go anywhere for long, but I may not have an option to go at all soon. I det I smoked and maybe this is just part of the priceI pay, but at 57 years old with no spouse I am very isolated as it is. I had to pass on the upcoming invatation to drive from Colorado to Wisconsin. Apria has liquid oxygen but wont help me unless I dump my current carrir. They also told ne my 2 ft tall "R2D2' liquid oxygen tank to refill my portables is illegal to transport. They are full of it, and are poorly rated. But when we get blackmailed by companies, its no wonder we begin to give up.
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- bunnymusic60
  
  Are you anywhere near NJ, NY, PA, or OH? I use Community Surgical from Toms River, NJ, and they still have to give me liquid.
  
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LUANNSPIRIT

I have been on liquid for 6 months and will continut to be until it ceases to be available at all from anyone.
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- HIcopd - Hawaii State Captain
  
  I am grateful my provider helped advocate with me so I was able to get liquid O2, as its so much more portable and quieter than other forms of O2. We really expected to have to fight even longer than the 3 weeks to get it. They only had huge 8 pound companion 1000 tanks, but a friend helped me get a lighter, more portable Helios h300 unit and dual lumen cannulas, so I can more readily transport and use my supplemental oxygen. Yeah!
  
  It really shouldn't be this tough for patients to get what they need to stay healthy and active. We are going backwards in healthcare!
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AlinPerry

Why is the survey not active now..that's what it said to me..im on oxygen here in Colorado Springs...but im moving Monday to Las Vegas and I don't need oxygen there...here they Gabe me the big ones to carry and I hurt my neck..they won't allow the small ones unless you have certain insurance..but sorry could not get to do the survive
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- Karen Deitemeyer - Florida State Captain
  
  I don't know for certain, but I think this survey is completed? I just want to wish you the very best with your move. I hope that all goes well.
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- Karen Deitemeyer - Florida State Captain
  
  Hi AlinPerry - I think this is a survey from a few weeks ago and is complete. Hoping someone else will know for sure.
  
  I just want to wish you the very best with your move. I hope that all goes well.
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- Ken Benson-California Lung Health Advocate and State Captain
  
  The survey is no longer active.
  
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Val715

I am thankful my insurance provider will cover my liquid oxygen in what I call the portables. I guess I really need to look into more about COPD, but I a k so had the dreaded lung cancer, which resulted in a lung lobectomy. I continue to try to walk and stay active even when my breathing is not good.
I guess I am guilty of not using my portable oxygen because I try to make the longer.
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