COPD Foundation Blog

Find inspirational stories, tips from the COPD Coach, events, and current news on the COPD community blog. Have a question regarding COPD that you would like to share with our community? Contact our COPD Coach. Coaches Corner is aimed at providing information for individuals with COPD to take to your doctor, and is not in any way intended to be medical advice. If you would like to submit a question to the Coaches Corner email us at coachescorner@copdfoundation.org. We would love to hear your questions and comments.

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Articles for category Advocacy

Giving To Support the COPD Community

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As COPD Awareness Month comes to a close, the COPD community reflects on the successes we have achieved in 2016.

Strides in research for improved therapies, creation of the National COPD Action Plan, advocacy for improved access to life-saving treatments, and support provided to more than 25,000 members on COPD360social.org - these are just a few ways we have striven to help you and millions affected by COPD.

"COPD360social has been a life-line for me. I have found needed info and made new friends who understand. I no longer feel alone. Thank you all," COPD360social member, Bon Bon.

Take Action for COPD Giving Tuesday Help us be a life-line to others.

Give the gift of better breathing. Your financial support will help us run our research and advocacy programs that will lift this silent epidemic out of the shadows and bring us closer to a cure. Most of all, your gift will allow us to provide our free education and community outreach services to those who currently live with COPD.

Donating is easier than ever before by using our new Apple Pay option! Learn more.

If you are online, leave us a comment or tweet us @COPDFoundation using hashtag #donate on Facebook or Twitter. Once posted, you will receive an auto-reply with a 60-second form to complete the process.

On behalf of the the global COPD community, thank you for helping us create pathways to a cure for COPD. Take action today to breathe better tomorrow.

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Tags: donate Giving Tuesday
Categories: Advocacy Education, Resources and Studies

TAKE ACTION: The Centers for Medicare and Medicaid Services (CMS) Plans to Cut Reimbursement Rates for Pulmonary Rehab in 2017

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The Centers for Medicare and Medicaid Services (CMS) recently announced plans to cut pulmonary rehabilitation reimbursements rates in 2017. The COPD Foundation, along with the greater COPD community and partners in the U.S. COPD Coalition, are joining together to prevent this from happening. Pulmonary rehabilitation is vital for individuals living with COPD- and we urge everyone in the community to take action today to breathe better tomorrow. You can send a comment to CMS by clicking here now. Below find a message from the chairman of the U.S. COPD Coalition, Sam Giordano, MBA, RRT:

According to the dictionary, the definition of a coalition is, "an alliance for combined action." Between now and the year's end, the U.S. COPD Coalition (USCC) has been given a chance to prove the definition accurate.

This is a call to action is to all members of USCC, regardless of whether you are COPD patients, loved ones, healthcare professionals, or friends. As we have known for some time, pulmonary Rehabilitation works and the scientific evidence proves it.

It is not news that too many COPD patients struggle to gain access to the few programs currently available. Due to an already too low reimbursement, there simply are not enough programs to meet the demand from our community. Many programs struggle to remain in operation because of the low reimbursement rates from the Centers for Medicare and Medicaid Services (CMS). Additionally, the low rate discourages development of new programs in areas where access is non-existent.

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Tags: Centers for Medicare and Medicaid Services CMS pulmonary rehabilitation reimbursement
Categories: Advocacy

Today is World COPD Day - Take Action!

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November 16, 2016 marks World COPD Day - a time for all of the stakeholders in our community to work together to educate the world about this silent epidemic. Let’s raise our voices for the 300 million individuals living with COPD worldwide. So few understand what it is like living with COPD- here is our chance to educate and inspire.

How can we take action?

  • Take the Global Disparities Survey - a short questionnaire that will help us paint a better picture of our global community.
  • Share your #GoOrange story by uploading a photo to the COPD360social activity feed. Don’t have an orange photo? Click here to create one!
  • Take Action for World COPD Day
  • Join the COPD community on Twitter for the #COPDChat from 3-4p ET. Hosts from the National Heart, Lung, and Blood Institute, Centers for Disease Control, American Lung Association, and American Association for Respiratory Therapists will be answering questions and prompting discussion around the topic of COPD. Use hashtag #COPDChat to join the conversation.
  • Help shape one of our upcoming studies by participating in a focus group. All participants will be compensated for their time. Click here to learn more.
  • Watch and share the “COPD360: Pathways to a Cure” video that describes how we are forming a community and working together to find a cure for COPD.
  • Watch and share a pre-recorded webinar hosted by the COPD Foundation, Caregiver Action Network, and the National Heart, Lung, and Blood Institute around the importance of COPD caregivers in our community.
  • Download and share any of our COPD awareness materials at copdf.co/Go-Orange.

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Tags: awareness GoOrange World COPD Day
Categories: Advocacy

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!

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.

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Tags: National COPD Action Plan
Categories: Advocacy

Medicare Answers Now Readily Available to the COPD Community

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This blog post was written by Joe Baker, President, Medicare Rights Center.

Understanding everything about Medicare, from when you should enroll to what Medicare covers – and doesn’t, to what you will pay and how to lower your costs, just became a whole lot easier for people with COPD and their families, caregivers, and health professionals.

Thanks to a new partnership between the COPD Foundation and the Medicare Rights Center, the largest and most reliable independent source of Medicare information and assistance in the United States, a link to the new Medicare Interactive is now available on the COPD Foundation’s website.

Medicare Rights Initiative Medicare Interactive is a free online resource packed with hundreds of answers to Medicare questions to help you navigate the complexities of Medicare coverage. The site’s new design and features ensure that its users can quickly find the Medicare answers they need through smart links to relevant Medicare Interactive pages and case examples, a roll-over glossary, and other helpful resources.

You can create a free Medicare Interactive profile to bookmark your favorite pages, manage Medicare Right’s newsletter subscriptions, access free exclusive links/downloads, and receive notices about key Medicare dates. As an initial thank you for registering, you will receive a welcome e-packet from the Medicare Rights Center, complete with the exclusive New to Medicare Guide.

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Tags: COPD Medicare rights
Categories: Advocacy

The COPD Town Hall and the First-Ever National COPD Action Plan

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The National Heart, Lung, and Blood Institute (NHLBI) hosted the first-ever COPD Town Hall meeting at the National Institutes of Health on February 29-March 1, 2016. The meeting was a critical first step in the development of a National COPD Action Plan to tackle the COPD epidemic in the United States.

The COPD Foundation worked with NHLBI to bring together patients, caregivers, government representatives, medical professionals, and others to address the disparities in government funding of prevention, treatment, and research around COPD.On day one, attendees were assigned to working groups that developed objectives and tactics around one of six goals. The multi-disciplinary teams presented the results of their brainstorming sessions to the broader group on day two. The discussions were broadcasted in real-time to online viewers who contributed to the conversation from their homes.

National COPD Action Plan The following common themes arose day two of the COPD Town Hall presentations:

  • Real progress is going to take an army of individuals and groups working together;
  • Attitude change and increased engagement among the public, providers, patients, caregivers and policy makers is requirement of change;
  • Growing referrals and access to pulmonary rehabilitation is a short term win that can make a big difference;
  • Innovative ways of collecting and using data will drive progress;
  • Increased funding for research must include a greater focus on prevention, public health and translational research as well as growing what we know about how COPD progresses in each individual;
  • Growing the COPD360 patient registry is central to advancing research towards improved therapies, and ultimately, a cure for COPD.

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Tags: COPD COPDTownHall National COPD Action Plan NHLBI NIH
Categories: Advocacy

The National COPD Action Plan

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The COPD community has long advocated for the creation of a national action plan to address COPD. Thanks in part our community efforts, the National Heart, Lung, and Blood Institute (NHLBI) will convene the first ever COPD Town Hall Meeting in Bethesda, Maryland. Creating such a plan will provide states across the country with a unified and comprehensive strategy to reduce the burden of COPD. Anyone interested in participating is invited to join the COPD Town Hall Meeting on February 29 - March 1, 2016.

For more information and to participate by registering for the COPD Town Hall Meeting, visit the Event Page.

“Action Plan During the meeting, each attendee will be invited to a working group and charged with developing objectives, tactics, and benchmarks related to the needs of the COPD population. Your input is critical to shaping the specific goals that make up the COPD National Action Plan, as well as identifying the top initiatives and efforts the plan will outline.

The COPD Foundation will host a welcome event prior to the meeting on Sunday, February 28th. If you register using the link above, please send a follow-up e-mail to Jamie Sullivan, Sr. Director of Public Policy, at jsullivan@copdfoundation.org so she may provide you with additional details.

If you have further questions about the COPD National Action Plan or the upcoming COPD Town Hall Meeting and welcome event, please contact jsullivan@copdfoundation.org. We look forward to partnering with you as we continue charting the future of lung research.

Can't make it to the meeting? Connect with us on COPD360social - we'll be asking for your comments!

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Tags: National COPD Action Plan policy public
Categories: Advocacy

A Message to the COPD Community

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You may have seen our posting under the Foundation press release section that the Centers for Disease Control and Prevention (CDC) has just launched a new advertising campaign featuring people living with the results of their smoking. While we acknowledge that COPD is in many cases a result of smoking, we wish to stress that these ads deal more with the consequences of smoking than they do with COPD. While smoking cessation is the best way to prevent COPD, smoking also results in many medical risks other than COPD. Some of the interviews could be considered somewhat graphic and could be disturbing to some. We encourage our membership to exercise their best judgment as to whether these images and interviews might be too disturbing to view. The COPD Foundation is dedicated to helping people live with COPD and improve their quality of life; we also believe that the concept of “shame and blame” doesn’t have a place with those actively trying to improve their quality of life with COPD. Once again we ask you to use your discretion when deciding to view the content of these ads. Thank you.

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Tags: campaign CDC COPD Tips from Former Smokers
Categories: Advocacy

Will I Lose My Oxygen?

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Dear COPD Coach,
I am a “snowbird” in that I live in Florida during the winter and in New England the remainder of the year. I was informed by my oxygen supplier in New England that they will no longer supply me with liquid oxygen, and want to arrange for me to return my tanks when I return (I am still getting liquid in Florida from the same company). Since I live in New England most of the year, the thought of losing my liquid really upsets me. What can I do?

-Liquid User

Dear Liquid User,
You are facing a problem many others across the country share. Presently the COPD Foundation is looking into this issue along with several related problems such as cutbacks on the delivery of compressed tanks and problems involving traveling with oxygen. Liquid oxygen is often a preferred delivery system and can often provide these people far more mobility than they could obtain with compressed oxygen.

The first thing that should be done is to file a Medicare complaint. The easiest way to do this is by calling our C.O.P.D. Information Line at 1-866-316-2673 to reach a trained associate. It is VERY IMPORTANT that anyone who receives a notice of a change in their delivery system file this complaint. The only way the situation will change is to make our voices heard! We will use this information to access what actions we need and can take to make sure that our community is properly served.

When you begin oxygen therapy, your doctor writes a prescription.The oxygen supplier you select then works with your doctor to develop a service plan that addresses the type of delivery system you require, your liter flow both during activity, as well as what you will need for mobility and emergencies. This service plan is required by law and is effectively a contract between you and your supplier, and cannot be changed or altered without your and your doctor’s approval.The provider must also notify you in writing of any “proposed changes” to your service plan.If they are no longer able to provide you your prescribed therapy, they are obligated to work with you to find another supplier who can continue the services specified for you.What they cannot do is to simply show up and announce that the service plan has been changed. This is very important: if you simply allow them to change your equipment you will in essence be allowing them to change the service plan.

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Tags: access doctor Insurance O2 oxygen prescription supplier
Categories: Advocacy

Staying Healthy with COPD

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Dear COPD Coach,
Having lived with COPD for some time, I do my best to avoid colds and other infections that can aggravate my COPD. Do you have any suggestions for me?

–Staying Healthy

Dear Staying Healthy,
Because COPD often affects our immune system, as well as our ability to recover from common illnesses, you are very right to be vigilant. Avoiding sick people is certainly a good start! However that is certainly not all you can do to remain healthy. Here are some tips to safeguard your health and avoid exacerbations (times when your symptoms become worse):

  • Washing your hands regularly is considered to be a good first line defense! Germs are often transmitted through things we touch. Something as simple as a shopping cart handle, or even a doorknob, can harbor germs. These germs are then entered into our respiratory tract when we touch our face. Washing your hands regularly will reduce the likelihood of catching an illness.
  • As you mentioned, avoid people who are sick. Consider wearing a surgical masks when you are around large groups of people during peak cold and flu seasons. Learn to spot the signs of an exacerbation. Key signs include: difficulty breathing for a longer period of time, a change in the color of mucus (please keep in mind, early morning mucus tends to be darker than later in the day and is normal), increased congestion, or more coughing than normal. If any of these signs are present, contact your doctor.
  • Diet is very important in COPD management. Because a person with COPD uses a large amount of calories just to breathe, it is important that you get enough “healthy” calories each day to offset this deficit. You should be eating balanced meals. Your meals should also be smaller and more frequent throughout the day. Large meals can actually cause breathlessness (if you use oxygen, wear it while you eat) and digesting large meals actually consumes a large amount of calories that you need to breathe.
  • Get into a regular exercise routine. The best tool here is respiratory therapy but if you don’t qualify or cannot afford it, you can always exercise on your own. Speak with your doctor or a respiratory therapist about an exercise routine that is safe, comfortable and effective for you.

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Tags: exercise flu health prevention season shot staying healthy
Categories: Advocacy

One week to go until COPD Crowdshaped!

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With COPD Crowdshaped taking place in just one week from now, the excitement and activities are really gathering pace! Joining us and Novartis in San Francisco will be an eclectic mix of Crowdshapers representing industries, businesses and exciting disciplines from around the world.

The Crowdshapers know their challenge and we’re hearing how much they are looking forward to the opportunity to potentially make a difference to the lives of millions of people affected by COPD.

We’re so passionate about doing more for the COPD community and we look forward to seeing what the crowd comes up with and sharing these ideas with you.

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Tags: crowshaped cure ideas innovation treatment
Categories: Advocacy Community Announcements Health Policy and COPD

National Women's Health Week

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In honor of National Women's Health Week, we want to celebrate all of the women in our lives, and encourage them to assess their health.

The Department of Health and Human Services says, “We know that women are often the ones who make sure everyone – everyone else, that is – in our families are cared for. But too often, we put our own health last. But the reality is unless you take care of yourself, you cannot really take care of your family. That means eating right, exercising, quitting smoking, and getting the care necessary to stay healthy.”

COPD is the third leading cause of death in the U.S. More than 30 million Americans are living with the disease, and over half of these people don’t even know they have it. As people grow older, they mistake symptoms of COPD for regular signs of aging.

What are the symptoms? Increased breathlessness, frequent coughing (with and without sputum), wheezing, and tightness in your chest.

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Tags: COPD Education health health National Week Women's
Categories: Advocacy Community Announcements

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