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We Need Your Comments for the National COPD Action Plan

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The COPD Foundation has long advocated for the need to create a coordinated, comprehensive national plan to tackle the COPD epidemic in the U.S. Earlier in the year, the National Heart, Lung and Blood Institute (NHLBI) hosted the COPD Town Hall meeting to gather input on what should be included in the first ever National COPD Action Plan.

We are pleased to report that the first draft of the National Action Plan has been published!

National Action Plan for COPD The NHLBI team has brought together the input from all those at the Town Hall but now YOUR voice is critical. In order for the plan to address the problems faced by patients, caregivers, providers, researchers and more, they MUST hear from you directly about what those problems are and what types of solutions you would suggest.

The draft plan addresses five overall goals with specific objectives correlated to each goal:

  • Empower people with COPD, their families, and caregivers to recognize and reduce the burden of COPD;
  • Promote and sustain awareness, education, and training among health care professionals to increase COPD prevention, detection, diagnosis, treatment and management;
  • Collect, analyze, disseminate, and report COPD-related public health data that drives change and tracks progress;
  • Increase and sustain research to better understand prevention, pathogenesis, diagnosis, treatment, and management of COPD;
  • Integrate recommended national policy, educational, and program changes into the legislative, research, public health, and care delivery structures.

These goals provide the framework for public and private action that can be undertaken in the years to come to provide better care, spur more research, and implement effective policies for COPD. The opportunity presented by the National COPD Action Plan cannot be overlooked. For years we have fought for COPD to receive the attention and funding that its severe impact necessitates. While the plan itself won’t fix the disparities in funding for COPD research or the lack of public health programs to support COPD prevention, diagnosis and management, it IS the first step in the process that will open doors that have previously been closed. It IS the platform that the COPD community can rally around but in order for it to be THE COPD agenda for the future, it must be informed by all those who are affected by COPD and who can in some way impact important COPD-related outcomes.

There are three ways for you to join in the conversation.

  • Read and provide formal comments to the National Action Plan directly via the comment system set up by the NHLBI on the Learn More Breathe Better Website here.
  • Review the list of organizations who have informed the development of the National Action Plan to date and provide suggestions for other stakeholders who should be a part of the process.
  • If you are a COPD patient or caregiver and prefer to engage in conversation about the National Action Plan rather than submitting formal comments, join us on COPD360social and the COPD Foundation will ensure that your comments are compiled and provided in a formal way to NHLBI. We will be posting a series of questions over the course of the next week to encourage discussion among our community members, so check back often.

We hope that in bringing our voices together, we will ensure a plan is created that willl result in improved quality of life, and someday, a cure for COPD.

62 Comments



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  • STOP SMOKING!!!!

    Reply
    • Yes I agree, I've never smoked. But where I live they allow smoking and I have COPD/Severe. I haven't been online for awhile because I was hospitalized for pancreatitis
      Reply
    • Probably the most important factor, and then encourage family members who do smoke to do it outside the house, away from vulnerable adults and children.
      I think there could be more media education on what happens to our lungs if we abuse them. This is a British advert about the effects of smoking.. https://www.youtube.com/watch?v=AIyqcST29wQ
      I think more should be done to discourage people from taking up smoking, like perhaps offering discounts on medical insurance? Same for alcohol.

      Reply
    • I find that many public places allow smoking just outside their entrance door, so we are forced to wade through that cloud. Yuk, cough,cough.I think they should provide a smoking area if they feel they have too, but away from the general public.

      Reply
    • I have stopped shopping at Shop Rite because they have an ashtray on both sides of the entrance. I tried reporting it but nobody is listening.
      Reply
  • I don't know where this fits in, but because of Medicare's recent rule changes, many of us find that we are not allotted enough portable oxygen tanks to allow us to be at all active outside our homes. If we may receive only 18 (at the most) tanks each quarter or for each 90 day span, the math tells me that I have oxygen enough to be outside my home only one hour each day. Isn't there something wrong with this? I realize Medicare is trying to cut costs, but this seems a bit extreme.
    Reply
    • 18 tanks for an entire quarter doesn't seem nearly enough, even for MD appointments and marketing. If you have a conserved, like the oxymizer, it could make tanks last slightly longer, but 18 tanks for a quarter doesn't sound like much.
      What does your MD say? Maybe call the COPD info line and see if they can help.
      Reply
    • Medicare (to my knowledge) does NOT limit the number of tanks you are supplied. This is ALL being done by your supplier. First you need to make sure that your doctor has listed the number of tanks you require in your letter of necessity (prescription). If not, you should have him revise and send to your oxygen company. If they still refuse to provide the you should call the 1-800 MEDICARE number, ask for a supervisor and file a complaint. If you haven't done so yet, you should also call the COPD Information Line at 866-316-2673 to document your complaint. You also should fill out the oxygen survey at: http://www.thoracic.org/patients/par/par-publications/ats-home-oxygen-patient-survey.php. This is a problem going on all over the country and we need evidence to bring to Medicare to show thinks are not working as they think they are!
      Reply
  • Maybe if an important political were affected by COPD either directly or by association thing might come into public view.
    Reply
    • Today I received my Medicare and You annual update book. I went straight to oxygen. It's part of the durable medical equipment category. All it says is that oxygen is covered , but nothing about new limits or any limits at all.
      Reply
  • Bill Clark, thank you! I am really surprised at what you said because I have heard this from 3 different suppliers and I am sure that at least one of them is very reliable. They say it all started about 4 years ago with the Medicare changes and the tank limitation began this past July along with the bidding situation. I was told if I wanted more tanks I would have to go to them (them being an hour away in an unfamiliar trafficky area. I'm 84.) and pick them up or exchange empties for full ones and I might have to pay for them which I could never do. One of them said they were allowed only one delivery every 90 days. I will take your advice now. Again, thank you!

    Reply
    • They are doing this because reimbursements are being cut by Medicare. According to Medicare rules, your oxygen supplier is required to supply what your doctor orders. Your oxygen supplier is not allowed to have you pick up your tanks, and there is now rule that says they can only deliver every 90 days (however I believe that they are required to rest your equipment every 90 days). All these suppliers have banded together to eliminate liquid oxygen, smaller compressed tanks and to limit the number of tanks they deliver. If Medicare tries to force them to follow the rules, they threaten to go out of the oxygen business. This is why it is important to fill out that survey as Medicare thinks everything is going great!
      Reply
    • Bill, did you mean there is NO rule that says they can deliver every 90 days? I'm not sure what you mean by they are required to "rest" your equipment every 90 days. So, then are they confused or am I being deliberately misled? It's very confusing! I am feeling overwhelmed.

      Reply
    • I am sorry...I meant test your equipment to make sure your concentrator is working properly. There is no rule that says they can only deliver every 90 days. They are doing this to cut their costs, not because of any Medicare rule.
      Reply
    • Bill, I have filled out the survey and fount it to be very revealing for me. I think I was able to give the picture pretty well. I have not made the calls yet because I don't know if my doctor included the number of tanks I should get. We never discussed that. With my first and only other company, I just decided how many I needed and that's what they brought me. But I will get in touch with my doctor. It's great to have support like this, thank you!

      Reply
  • Please, if you are having this kind of difficulty with your O2 supplier, call the Medicare hotline number Bill gave you, ask for a supervisor and raise hell (not in a way that will get you hung up on, but in a way that will get their attention). Suppliers are forced to use the kinds of techniques not because they're unfeeling $%&($s, but because competitive bidding has made it nearly impossible for the to stay in business. Unless we object, NOTHIMG WILL CHANGE! Make it happen, people! Please!
    Reply
    • I will definitely do the survey and the hotline number. I know that this bidding has made it difficult for the smaller businesses and some have had to g out of business and I am really upset about that. This country was built on such businesses and I try to patronize them whenever possible. It was the larger company who I am with now but hope to switch to a smaller one who gave me this misinformation. I am stuck for now till I know whether I have been accepted by this other company. I would then work through a local, small pharmacy who is subcontracted by them. There's a lot of that going on too! I appreciate all the input and welcome any other helpful thoughts!
      Reply
  • I have two suggestions. For goal #1, An national advertising campaign informing the public about COPD. I would model it after the Mothers Against Drunk Driving campaign. For goal #2, Train COPD specialists modeling the training program of the National Asthma Educators Certification Boards' certification preparatory course. I would encourage the American Association for Respiratory Care to create an examination which upon successful completion would bestow a certification or credential for a "COPD Educator".
    Reply
    • I took it upon myself to move Dee28's reply up here where it belongs.

      Dee28
      Goal 1: First paragraph, last sentence. "...the results can set off loneliness and distress..." Please also add "and depression." Depression is common in those with chronic disease, including COPD.

      Goal 1: 2A: Important to note that other ways people can develop COPD - stigma of being a "smoker" not always the case.

      Goal 2: "...and pulmonary rehabilitation...should be offered as a fully medically reimbursable health program..." Medicare will pay for 1st 12 weeks; but maintenance (long-term / life-long) pulmonary rehabilitation is essential to maintain optimal pulmonary function, energy, activity, quality of life. Plus can help prevent social isolation. But the cost to the patient for long-term PR is not reimbursable.

      Goal 2: 5A: Pulmonary Rehabilitation Programs should be certified annually (or not reimbursed). Programs should be standardized too.
      Reply
      Reply
    • Or maybe not. But if not ere, then what goals does it refer to?
      Reply
  • 10/11/16 Started treatment (first inhaler) nine months ago. I had done some research, and had a very basic understanding of the condition. My next move, was to find a local support group. It wasn't that easy. Also, when I read the blogs posted on the net, I realize lots of people encounter many obstacles to getting proper treatment. We (patients) need to learn how to advocate for ourselves. THIS SHOULD BE THE PRIMARY MISSION OF THE PLAN.
    All the medical jargon and technical stuff is great, but teaching people how to get the best care possible, can have an immediate impact on their quality of life. It worked for me!
    Reply
    • I would say persistence is necessary. This is a follow-up to my previous remarks about problems I've had in obtaining the number of 02 portable tanks that I need to carry on as usual with my activities. And I do feel this last item is very important for us. We never should feel that we can't so things we want to do. My new supplier was telling me that Medicare was keeping them from supplying me with my requested number of tanks, and because of encouragement her, I got busy and made phone calls, first to be sure of my status with the company and then to Medicare. What I discovered was just as Bill Clark said...Companies must supply you with the number of tanks your doctor prescribes. Armed with that , I called my company back and I now have a satisfactory resolution: I will get more tanks and they will deliver every 60 days instead of every 90 days. I also got a different customer service rep who was most cooperative. She agreed that when Medicare cuts back, it's the patent who suffers.
      Reply
    • It should say "encouragement here"
      Reply
    • Buckybuck, good for you! You probably have helped many people who read this. The phones will be ringing for sure.
      I so agree with you "we carry on with our lives as usual and should never feel we can't do the things we want to do".
      Thank you!


      Reply
    • I would love to find a way to get the Pharm. Industries to lower prices of drugs to a manageable level. What we pay and what the rest of the world pays is insane....
      As one CEO put it the other day - "We are here to make our stockholders happy, not the patients".... really????
      Without us there would be no reason for the meds..... Oh, wouldn't that be wonderful.

      R&D, Please find the answer soon....


      Reply
    • That's what I thought. Thanks, Holly7
      Reply
  • Thank you to the Foundation for the opportunity to vent, albeit somewhat in vain. We must find a way to get the basic support that is vital to everyday living for people with COPD. I have been in contact with members of Congress and SMC and have found that I have been wasting my breath. The system is so complex that we patients are simple lost in the fog. The providers have patients right where they want them, telling us anything they want, providing us with whatever they want and no one stands beside us to fix the issue. It is so sad.
    Earlene

    Reply
  • Liquid O2 is the biggest problem of all. Competitive Bidding took it away from so many patients, unless you had been on it before that law. I am one of the lucky ones. But I used to travel to DC to be with others who were advocating and can no longer do it because there are no suppliers anywhere near DC who provide liquid to anyone. It is one of the easiest, longest lasting, and lightest to carry oxygens. Now I heard there is another Competitive Bidding going on where they want to take more durable medical equipment away from us. Do they not understand that we cannot live without oxygen? And how can we fight this?
    Reply
    • I don't understand. How would liquid oxygen be used?
      Reply
    • I have 2 large tanks of liquid that are refilled once a week. I can load my portable right from the tanks and it is pure oxygen. POCs are not pure oxygen. They are only a percentage of it.
      Reply
    • I can't find any information online about it. Can you steer me in the right direction please?
      Reply
    • Just go to Google and type in Liquid Oxygen Tanks.
      Reply
    • Using a search engine was the first thing I did. I just couldn't get the information I was looking for, that is why haven't I known about liquid oxygen as a therapy for the last 7 years that I have been on oxygen.
      Reply
    • It isn't really in liquid form when it gets to my nose. It is oxygen (air). Haven't you found anything about it on the internet? There is plenty of information. Look up liquid oxygen cylinders maybe.
      Reply
    • Yes, I have found it now. I am just surprised that i was not informed by doctors and others about this. Too late now, I guess.
      Reply
  • Furious I went to my doctor for my lungs, it is extremely bad. Neighbor isn't helping and so isn't the Police they came the other day to prove that she had no machines, I told him she wasn't home, and might not get back until 4 p.m. or later. Manager must of told her to keep it off, because she was quiet for a day. But this morning started at 5:30 a.m. and hasn't stopped. When I called the police they knew who I was I guess and wouldn't come. I said last time I call them. Was supposed to see an apartment building, but two drivers came at the same time I forgot about the Pulmonary Dr. I'm furious never smoked, nor had an ash tray. I asked the doctor to send me the report so I can find a lawyer to sue this place. I know one good thing is I heard the old fart of a manager is leaving, maybe the lawyers and big shots thought with the death a month ago it was time for her to go. Yippee.

    Reply
    • Nancydun, are you saying a neighbor who was on oxygen died and you are happy about that? If I read that right then you are an insensitive jerk.

      Reply
    • I would like to see specific information through public announcements on TV and FB with pictures of damaged lungs and graphic descriptions of how COPD and Emphysema really look. It should show people attached to an oxygen tube day and night, the inability to get a deep breath or walk across a room. This would be much more of a deterrent than what they have been doing for years. Also, the commercials for COPD Medication with a long list of side effects that include death, are not conducive to making people stop smoking.

      There has been some progress in stem cell treatments, but we need more research to accelerate the treatments safely and effectively. I believe that one day stem cells will be able to cure COPD and Emphysema, but it takes dollars to make that happen.

      Reply
  • I smoked tobacco for 56 years, I knew it was bad for me but justified my reasoning with the adage that their are people who smoked for 80 or 90 years, so why not me. Also I worked in a large boiler plant for 7 Years about 40 years ago, and was heavily exposed to asbestos. The doctors have seen asbestos on my chest x-ray and I also have emphysema from smoking.
    I wished there was a way to educate the public about these hazards to the lungs that would scare them more than some warning labels that say MAY be harmful. It is harmful !!!

    Reply
    • Exactly, pepere! I smoked and had no clue what was silently happening to my lungs. I know, sounds ridiculous. But I had no symptoms whatsoever in all that time. I did not cough or have shortness of breath. Then suddenly I became quite ill and was hospitalized. I was stunned to find that I had stage 4 Emphysema. There should be better education to save the younger generations, and there should be more research for a cure.

      Reply
    • I think there has been quite a bit of education put forth to the public. But just as with anything else, people will do what they choose to do anyway. Besides, tobacco smoking is addictive, one of the strongest addictions there is. I am a victim. Perhaps more readily available help with treating the addiction would cut down the numbers of COPD sufferers.
      Reply
    • There are plenty of ads on TV and in magazines. People I run into I always let them know that this is what they are heading for. They always say I know and continue their habit. It is because they are ignorant and don't think it will happen to them. There is plenty to let them know how bad it is.

      Reply
    • I agree that people will do what they want to do, but I can't emphasize enough about addiction! And especially tobacco addiction. That's where we need the help and education. But it's very hard! Until one is actually dealing with this addicton, they can't really "get it"!
      Reply
  • I have severe COPD but I do not need O2 except when I am exerting myself...walking over 100 yards or using the treadmill. I do have shortness of breath but I try to limit the things I can do around the house or do these things slowly to off set the SOB. In addition I do these chores when my meds. are working/have kicked in. I use Sprivia and Symbicort daily. But what I think quite a lot of us might need is improved medications...fasting acting that really open you up with a duration of about 1-2 hours. Sabumatol does not work for me probably because I am taking Symbicort. However I do not have SOB when I am just moving around the house and breathing properly. But I do need help when I go shopping, go to church or
    simply going upstairs to shower.
    Perhaps newer medications like I am looking for would also be helpful to the folks that need 02 on a regular basis, meaning they might not need as much 02 and are less subjected to these "restrictions" placed on them by the suppliers/government.
    Reply
  • This is my third comment on here but I thought of one more thing.
    I am presently using a portable ventilation system and I have to say it has been a life saver. There are new and brilliant machines out there that can help so many patients of COPD at certain stages. I'm hoping it is given a real good look and a lot of support when this type of equipement is introduced and support it as much as possible. This means the Pulmonologists, therapists, for sure. They are the ones that see us as patients and know us. They are the ones that know what the new machines are doing for us. T

    Obviously getting it passed by Washington is where we need people fighting in our corner. Patients that have used them will help you with that!

    Thank you.



    Reply
    • What is the name of the portable ventilation system? How can they help more than regular oxygen in small portable tanks?
      Reply
  • I am a healthcare provider that runs the Pulmonary Rehabilitation program at our facility. I get very angry with the pharmaceutical companies for charging outrageous prices for inhalers and the insurance companies that
    keep changing medication coverage on patients. For instance, you may have a patient that has been using ProAir and Symbicort and these medications have been working great. Then suddenly your insurance will no longer cover these medications and they want to change you to something else. I have seen this happen time and time again, and the new medication that they will cover may not work as well for this patient. There has to be a way to stop this. The insurance companies need to quit messing with patient's medications and leave them on what works for them. The pharmaceutical companies need to stop taking millions of dollars away from the patients by charging ridiculous prices. If you can't afford your COPD medications, you're not going to fill your prescriptions, therefore, COPD exacerbations will just continue, hospital readmissions will just continue.
    Reply
    • Amen Brelee -- if only we could talk some sense into someone.


      Reply
    • Thanks Brelee. Maybe you can write to your Senators and Congressmen. I find that sometimes I can get someone's ear that way. So glad you are able to see what is happening.
      Reply
    • Thanks, Brelee for being an advocate for us. I am one of those who doesn't always refill prescriptions when I should. I guess a god start might be writing to our congressmen. Anybody have any other ideas?
      Reply
    • Agree AMEN. If the insurance companies would realize that proper treatment will cost less in the long run, as long as they can keep the pharm. companies in check on prices. Correct meds. Good rehab and follow through will work wonders to keep us healthier. But we all know profit comes before people's lives.
      Reply
    • When I first started using Ventolin and Advair for asthma, it was relatively affordable. When it reached 100 dollars per month per canister I applied for the pharma help plans. You have to qualify, but that is not hard. I get mine for free shipped to my home now. Just Google your medication and find out what company makes it. Contact the company and they will tell you what you need to do to qualify. I think most seniors would qualify since most of us live on fixed incomes. Big Pharma is way out of control as are the insurance companies.
      Reply
    • But will the pharmaceutical companies qualify you if you have insurance?
      Reply
    • Buckybuck, only if the insurance you have does not cover their product.
      Reply
    • That's what I thought. Thanks, Holly7
      Reply
    • Brelee, I have been through the medication change time and time again. The insurance companies not only charge so much for the medications that we need, not to mention there are no generic equivalents available to lower our cost, the insurance companies decided when we can have what type of medications. I have suffered from COPD since the age of 24, and I am now 47. I was recently hospitalized this year because the insurance company decided that It would not cover my medication any more and I could not afford the nearly $800 that it would cost to get them so I went without. I had filled out the forms for assistance but every time I tried to pick it up it was never there. Needless, to say I was had a very hard time trying to get my medications. I have my medications now but at the expense of two infections of which I am still recovering from now.
      I hope that this plan addresses the issue of availability of medication for those who do not receive Medicare or Do not have Insurance. I have been and dealing with it on a regular basis.
      Reply
  • Goal 1: First paragraph, last sentence. "...the results can set off loneliness and distress..." Please also add "and depression." Depression is common in those with chronic disease, including COPD.

    Goal 1: 2A: Important to note that other ways people can develop COPD - stigma of being a "smoker" not always the case.

    Goal 2: "...and pulmonary rehabilitation...should be offered as a fully medically reimbursable health program..." Medicare will pay for 1st 12 weeks; but maintenance (long-term / life-long) pulmonary rehabilitation is essential to maintain optimal pulmonary function, energy, activity, quality of life. Plus can help prevent social isolation. But the cost to the patient for long-term PR is not reimbursable.

    Goal 2: 5A: Pulmonary Rehabilitation Programs should be certified annually (or not reimbursed). Programs should be standardized too.
    Reply
  • There's still time to submit comments. I submitted mine today, both online at http://www.nhlbi.nih.gov/health/educational/copd/get-involved/town-hall.htm and via email at COPDActionPlan@porternovelli.com.

    It's really important for the policymakers to hear patient voices so they know what parts are missing from the action plan and what parts are good. Take some time to weigh in today, as comments are due by close of business tomorrow, Friday, October 28. Don't miss out on this very important opportunity to be heard. This is something that patients have been wanting for a very long time--at least the decade since I've been involved in COPD patient advocacy and long before then.


    Reply
    • Thank you to everyone who has joined in this discussion. Your voice is so important as Val mentions and you still have time to comment directly. We have made sure to echo the comments you have made here within our own and will post them shortly as soon as they are finalized. I hope you will all continue the conversation and get involved as the Plan nears a formal launch and advocacy efforts kick off next year.
      Reply
  • I am VERY concerned by the LOTT study that was published today I am worried that Medicare and Medicaid and insurers will use this flawed study to deny oxygen for folks who might otherwise benefit from it.

    The headlines and press releases read: Long-Term Oxygen for COPD with Moderate Desaturation Does Not Benefit Patients

    Here was the full article that was published in NEJM http://www.nejm.org/doi/full/10.1056/NEJMoa1604344#t=articleTop

    Here is info that is not making it into the press releases
    http://www.nejm.org/doi/suppl/10.1056/NEJMoa1604344/suppl_file/nejmoa1604344_appendix.pdf

    The average BMI was 28.6 with NO ONE having a BMI under 22,
    17% of no o2, and 13% using o2, were stage 4,
    and only 11% of no o2, and 9% using o2, had a BODE score of 7 or greater.

    all this info is on p26-29 of the appendix (2nd link)

    This study seems skewed - the phenotype most likely to benefit from oxygen was under represented and not evenly divided between the groups.


    Reply
    • Was this for stage 4 COPD/Emphysema? I cannot breathe at all without oxygen.
      Reply
    • I can't breathe without it either. Have been on oxygen 24/7 for 14 years now. I sent my comment directly to the link provided. Hope it serves its purpose.
      Reply

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