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A Coronavirus Update for the COPD Community

Posted on December 22, 2020   |   

This article was reviewed by a member of the COPD Foundation Medical and Scientific Advisory Committee (MASAC)

Updates from December 22, 2020

A Q&A Session with Dr. David Mannino: COVID-19 Vaccines December 2020
By: David Mannino, MD and Stephanie Williams, BS RRT

Stephanie Williams had an opportunity to spend some time with Dr. David Mannino and ask a few of the most commonly asked questions about the new COVID-19 vaccines.

Stephanie: Dr. Mannino, thank you for taking time to speak with me. As you might expect, lots of people are interested in the COVID-19 vaccine and have some questions. Here are a few questions that came from the COPD community:

Question #1- I have always thought that all vaccines were the same. Now with COVID-19 I am hearing about something called an “mRNA vaccine”. What does that mean and are they effective?

Dr. Mannino: There are some vaccines contain weakened or inactive parts of a particular germ (antigen) that triggers an immune response within the body. The body sees the antigen as an intruder and tries to fight it off. This is when antibodies are created and work to fight off the intruder. Some newer vaccines contain the blueprint for producing antigens rather than the antigen itself. Regardless of whether the vaccine is made up of the antigen itself or the blueprint so that the body will try to defend itself and it will prompt their immune system to respond much as it would have on its first reaction to the actual antigen. These types of vaccines do not create the antigen and so the person cannot “catch” the sickness from the vaccine. It tricks the body into producing antibodies without having been exposed to the real germ. An "mRNA" vaccine is one of these newer types of vaccines. In this case, its focus is the spike protein that is unique to the Sars-COV-2 virus that causes COVID 19. There have been two vaccines approved recently, each of them was very effective. The reports showed that they prevented over 94% of potential infections after the second dose of vaccine was given.

Question #2 - How safe are the COVID-19 vaccines? Should I be concerned about me and my family getting these shots? It seems that they have not been tested on very many people or for very long. Does that make anyone else nervous?

Dr. Mannino: That is a good question, and I think it is important to know that most of the side effects that people have reported have been mild. Here are some of the common side effects people reported after getting one injection of the COVID-19 vaccines:

  • Pain at the injection site (84%)
  • Fatigue (63%)
  • Headache (55%)
  • Muscle pain (38%)
  • Chills (32%)
  • Joint pain (24%)
  • Fever (14%)

The pharmaceutical companies and the FDA also provided information on the severe side effects that volunteers experienced. In general, those are side effects that are so bad that they stop people from performing normal activities. Most of the severe side effects occurred after participants got the second dose, and these side effects were more common among younger participants.

Among people aged 18 to 55, 4.6% reported severe fatigue after getting their second injection, and 3.2% had severe headaches. Fevers were also common in th8at age group; about 15.8% of the volunteers had a temperature of at least 100.4 degrees Fahrenheit after their second shot. Among volunteers older than 55, 2.8% reported severe fatigue, 0.5% experienced severe headaches after the second dose, and 10.9% had a fever.

We should have more details soon about the COVID-19 vaccine and people with underlying conditions like COPD. Most of the people who are getting vaccinated right now are health care professionals and other front-line workers. The CDC is creating a plan that will give us an idea of when elderly or people with chronic conditions might be able to receive the vaccine.

Question #3 - Can I catch COVID-19 after I get vaccinated? Or does it take time to build immunity?

Dr. Mannino: The currently approved vaccines do not provide its full protection right away. We expect subsequently approved vaccines to be similar. It is important that people know that even in the vaccinated group, however, a small proportion still developed Covid-19 (about 5% relative to the placebo group, which was about 0.005% overall). Even after getting the vaccine, people continue to take precautions such as mask wearing and social distancing for at least a week after the second dose. From a public health perspective, it may be important even for vaccinated people to continue social distancing and respiratory precautions until “herd immunity” (60-70% of population having antibodies (either through vaccination or infection) is achieved.

Stephanie: Thank you for taking time to help us understand more about the COVID-19 vaccines. The COPD Foundation Team will continue to inform the community as new information is available.

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Categories: Coronavirus (COVID-19) Education, Resources and Studies

Medicare Insights Survey Results

Posted on December 14, 2020   |   

The article was written by Jamie Sullivan, MPH, Danielle Boyce MPH, Kristen Willard, MS, Ruth Tal-Singer, PhD

The type of insurance you have can play a big role in what care you have access to and how much your care and medications cost. Since there are so many different types of insurance plans and because everyone has different considerations that are important to them, how people make choices, what types of things they think are important, and what resources they use to help them decide about insurance will be different for each person. We conducted the Medicare Insights Survey on COPD360social in October 2020 to find out answers to these questions and help us plan educational programs for 2021.

We heard from 192 people with chronic lung diseases who are currently covered by Medicare, Medicaid, private plans, and others. Here is the breakdown of the types of insurance that survey respondents have. Keep in mind that one person could select multiple options.

What matters in making insurance decisions?

Survey respondents were asked to select all the factors they think are important when they are choosing insurance plans and then to select the one most important factor.

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Categories: Education, Resources and Studies

Bronchiectasis: Everyday Health with Exercise, Nutrition, and Sleep

Posted on December 09, 2020   |   

This post was written by Jane Martin, BA, CRT

In this blog post we talk more about living with bronchiectasis and taking care with three different aspects of your health (and that everybody should keep in mind): exercise, nutrition, and sleep.

This is the fifth in a series of six blog posts to bring more awareness to bronchiectasis and things you can do. Follow these links to read more:

Disclaimer: Always check with your health care provider before making any changes in exercise, activity, or diet.


Exercise training is linked to improvement in exercise ability, shortness of breath, and less fatigue (tiredness) for people with bronchiectasis. It is also shown to be effective in decreasing exacerbations (flare-ups)1. You might be thinking, "Well, that’s fine, but I can’t exercise. I get short of breath just walking to my car!"

If you feel that way, you’re not alone! You should know, though, that exercise is possible. A pulmonary rehabilitation program can help you learn to exercise safely with the guidance of a special team of health care professionals. Some are now offering remote classes. Ask your doctor about referring you to pulmonary rehab.

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Categories: Tips for Healthy Living

Treating Severe Emphysema: One Family’s Journey with Bronchoscopic Lung Volume Reduction (BLVR)

Posted on October 29, 2020   |   

This article was reviewed by Kristen Willard, MS

This post is based upon the real-life experiences of Chris, a person with COPD.

Chris and Jody

Emphysema – one of the forms of Chronic Obstructive Pulmonary Disease (COPD) – is a disease that affects the person with COPD as well as their family and caregivers who watch them deal with the frustration and fear of having difficulty breathing. Before emphysema affected Chris’s lifestyle, he enjoyed everything about the outdoors. He spent hours working in his garden and went hunting with friends. He absolutely loved fishing with his two grandsons, which involved a long walk through the woods to get to the river. As Chris’s symptoms progressed, he no longer found that long walk easy to do. He also had to pick and choose what he could do, as everyday activities became difficult for him to finish. Chris would have to form a plan to do just about anything, so that if he was out of breath, he knew there was somewhere for him to sit down and take a rest. He found this to be disruptive and embarrassing.

His wife, Jody, watched him struggle for years, which fueled her search for treatments that could help them get back some normalcy in their lives. She also felt a divide between their family and the rest of the world. Jody was devastated knowing that Chris felt that his problems became his family’s problems too. Chris was very good about using all his therapies and keeping up with the activities he learned at pulmonary rehabilitation. They wondered if there was more that could be done.

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Categories: Medications, Treatments and Therapies


Posted on October 27, 2020   |   

This article was written by Jamie Sullivan, MPH and reviewed by David Mannino, MD, Ruth Tal-Singer, PhD, Byron Thomashow, MD, Stephanie Williams, BS, RRT, and Barbara Yawn, MD

Not much about the fall of 2020 feels routine but some things go on as usual and that means the open Medicare enrollment season. You may be reading this and say "I am not on Medicare" or "I’m happy enough with my coverage," and be tempted to click on to the next article, but if you have health insurance, regardless of the type or how happy you are with your current coverage, open enrollment review of your insurance plan should still be on your to-do list!

Why should you care about open enrollment? Many details about a given insurance plan can change from year to year, so just because you are happy now, you need to review your coverages in the assigned “open enrollment” time (for Medicare that is October 15, 2020 - December 7, 2020) to make sure that the doctors in your network, the out-of-pocket costs of care and the medications covered haven’t changed for the coming year.

Most of the issues we are going to cover in this blog are about Medicare. If you have a private plan from your employer or are enrolled in a Medicaid Managed Care Organization plan make sure to check the dates of your open enrollment. If you purchased insurance from a state or federal exchange (sometimes called Obamacare Plans), or if you need to purchase insurance for next year, your open enrollment period is from November 1, 2020 - December 15, 2020.

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Categories: Community Announcements Health Policy and COPD

Bronchiectasis and COVID-19

Posted on October 09, 2020   |   

This post was written by Jane Martin, BA, CRT

Individuals with chronic lung diseases have always needed to take special precautions to stay as healthy as possible and avoid situations that could harm their health. With the global coronavirus (COVID-19) pandemic, this has become even more important as we look to safeguard our health and the health of those around us.

So, what about those of you with bronchiectasis? How can you manage it effectively in this pandemic?

What is bronchiectasis?

Before we go on, let’s have a quick review of bronchiectasis. Bronchiectasis is a chronic lung disease where the tubes that carry air in and out of the lungs become widened, scarred, and inflamed.1 Cilia are tiny hair-like structures lining these airways. Their job is to move mucus up and out of the lungs. In bronchiectasis, the cilia don’t work as well as they should, and in some cases, they do not work at all. This can cause mucus to build up, triggering a chronic cough, encouraging germs to grow, and leading to more lung infections.

Some people who have bronchiectasis may have another chronic lung disease like COPD or asthma and may experience additional or stronger symptoms. For more on this, and other aspects of bronchiectasis, follow these links to our previous blog posts.

Now let’s talk about ways to stay well with bronchiectasis while living in the time of a respiratory pandemic.

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Categories: Coronavirus (COVID-19) Tips for Healthy Living

COVID-19 and the Chronic Lung Conditions Community – How are we doing after 6 months?

Posted on October 06, 2020   |   

This article was written by Delia Prieto, BSEd, MSEd, Danielle Boyce, MPH, Bill Clark, and Ruth Tal-Singer, PhD

It has been over six months since the COPD Foundation’s first international community survey that helped us understand the impact of the global COVID-19 pandemic on individuals with chronic lung conditions. We have been using the results to provide resources and programs to our community members in addition to developing new research and advocacy efforts. We previously reported highlights from Survey #1 and Survey #2 and are now analyzing the data from Survey #3, which was live for approximately one month, from mid-August to mid-September 2020. The survey was promoted through several COPD Foundation channels including our online communities, e-newsletters, social media and other advocacy groups.

Profile of Survey Respondents

Not all respondents answered every question, so the percentages reported in this article reflect only the respondents who answered the particular content being reported, unless otherwise specified. Approximately one quarter (26%) of the respondents indicated that they had completed at least one of the previous COPD Foundation’s COVID-19 surveys, which will help us understand what changed over 6 months.

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Categories: Coronavirus (COVID-19) Education, Resources and Studies

An Interview with Janice Cotton, State Captain Illinois and IMPACT 2020 Advocate

Posted on September 29, 2020   |   

This article was written by Christina Kononenko, BA, MSEd and Janice Cotton, State Captain Illinois

The COPD Foundation recently had a virtual chat with Janice Cotton, State Captain for Illinois for the last 10 years and IMPACT 2020 participant/advocate. Read on to learn more about Jan and her advocacy work.

Tell us about yourself.

I am an individual living with COPD, diagnosed in 2000. The impact of my diagnosis was devastating, to say the least.

What prompted you to advocate in the first place, and what continues to drive you to this day?

Listening to other people living with COPD who are in pain because of not getting answers to questions about their condition, their medicines, Medicare, and disability prompted me to start working for others. I had been through the process. Although I was still learning and searching for answers, I could certainly share what I had learned.

What types of advocacy work have you done to date?

I have held health fairs, spoken at pharmaceutical conferences and worked on panels giving the patient perspective on what our needs are and how clinicians can best help us.

Why did you decide to participate in IMPACT 2020?

Having worked on Lobby Day on Capitol Hill, I have knowledge of the process and what it takes to get our voices heard.

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Categories: Advocacy Community Announcements Personal Stories

COPD Foundation launches a Digital Health and Therapeutics Accelerator Network, COPD360Net

Posted on September 22, 2020   |   

This article was written by Cara B. Pasquale, MPH, Senior Director of Research and Project Lead for COPD360Net

The COPD Foundation, a not-for-profit organization focused on improving the lives of those affected by and stopping the progression of COPD, is delighted to announce the launch of the COPD360Net initiative.

COPD360Net Logo

COPD360Net has been created to deliver the following:

  • Allow clinical trials in COPD and related chronic lung conditions to progress more quickly and easily;
  • Increase the availability of telehealth, digital health tools and medicines that treat COPD; and
  • Prevent disease progression and improve lives of patients with COPD and related chronic lung conditions at all stages of the disease

The last approved new class of medicines for COPD was in 2011 and patient research has demonstrated the need for new and better medicines. COPD360Net will speed innovation by putting the patient at the heart of the initiative, as well as moving to improve uptake of new treatments in clinics.

COPD360Net consists of a network of COPD Foundation-accredited care centers as well as experts in the field of COPD and related lung diseases. It is overseen by a Steering Committee from the participating centers, plus members of the patient and caregiver community.

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Categories: Community Announcements COPD Foundation Initiatives and Activities Related COPD News

Q&A on the influenza vaccine (flu vaccine)

Posted on September 09, 2020   |   

This article was written by Kristen Willard, MS

An Interview with Dr. Barbara Yawn, COPD Foundation Chief Clinical Officer

We recently spoke with Dr. Barbara Yawn about questions related to the flu vaccine and people with COPD. Here are some of her answers.

I am 70 years old and have COPD. What kind of flu vaccine should I get?

Anyone 65 or older will want to ask for the high-dose quadrivalent influenza or flu vaccine. This type is given to older adults, because as we age, our immune systems are not as responsive. It has four times as much of the antigen or material that produces the immune or protective response. We want to give more antigen to our bodies (which is what prompts our immune response) so our bodies have a better chance of responding.

While the type of vaccine that is just sprayed into the nose sounds like a great idea, you will need to get the injected vaccine rather than the intranasal version. The intranasal version does not work well in adults, especially older adults and is not approved for or paid for use in adults over 40 years of age.

When should I get the flu vaccine?

The best time to get the flu vaccine is in September or October. You do not need to get the vaccine as early as July or August. We want you to wait so the protection lasts throughout the entire flu season which in recent years has extended into the early spring.

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Categories: Tips for Healthy Living

An Interview with Carol Rubin, New Jersey State Captain and IMPACT 2020 Advocate

Posted on September 01, 2020   |   

This article was written by Bret Denning, JD and Carol Rubin, MEd, MS.

The COPD Foundation recently had a virtual chat with Carol Rubin, New Jersey State Captain and IMPACT 2020 participant/advocate. Read on to learn more about Carol and her advocacy work.

How long ago were you diagnosed with COPD?

I was diagnosed with emphysema in 2014. Like so many others, I had COPD several years before I was diagnosed. I attributed my shortness of breath to being out of shape, needing more exercise and did not connect it to a lung disease until I finally saw a pulmonologist.

How long have you been a State Captain?

I became a State Captain for New Jersey a year ago. Prior to that, for two years I participated in the Foundation’s Advocacy Ambassador program, which provided participants with training, mentoring and important skills in grassroots advocacy.

What motivates you to advocate for the COPD community?

Raising public awareness of all aspects of COPD is my cause. Although COPD is the fourth leading cause of death, so many people are not familiar with it; they do not know what it is like living with COPD. Funding is critical to seeking a cure. I want to use my voice and my personal story to advocate and make an IMPACT!

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Categories: Advocacy Community Announcements Personal Stories

How Can You Become a COPD Advocate?

Posted on August 20, 2020   |   

This article was written by Bret Denning, JD.

What does it mean to be an advocate? That’s an interesting question that can have several different answers. For some, it means working to help others through education and outreach. Advocacy is not something out of reach – it simply means to make people aware. The COPD Foundation wants to help you recognize that as someone living with COPD, you have a voice that needs to be heard in whatever way is most comfortable for you.

In this video, Become a COPD Advocate and Make and IMPACT!, Stephanie Williams, Senior Director of Community Education Programs at the COPD Foundation, had the opportunity to speak with John Linnell, a state captain from Wisconsin. As a state captain, John is one of our most passionate advocates and is always willing to lend his voice in any efforts to help the COPD community. He believes that it is critical for the patient voice to always be heard. John wanted to share his story of how he became a COPD advocate and what it means to him. After being forced to leave the workforce due to COPD, John realized he had two options: sit home and "be that old man with a hose in your nose" or get involved and help educate others through their journey. He knew how challenging his own journey was and helping others overcome barriers like the ones he faced was an enlightening experience for him. It was a desire to speak on behalf of others that brought him together with the COPD Foundation and our State Captains program. John wanted people to know that even if there is no cure for COPD right now, the disease is not a death sentence and that there is so much that can be done. How anyone deals with their COPD is completely up to them. John rejected the "woe is me" approach and decided to not only live with it but work every day to help others. To him, that is the point of advocacy—let your voice be heard!

As a COPD advocate, John wants others to become involved! He emphasized that there is not a "one size fits all" approach to advocacy and that people can find what makes them the most comfortable, from handing out literature at a health fair or participating in a conference to speaking with pharmaceutical representatives or members of Congress. John gave an example of a friend who was not comfortable with public speaking but was a powerful advocate through social media. The question thus becomes, how does one become a powerful advocate? This is where IMPACT comes in.

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Categories: Advocacy Community Announcements Personal Stories

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