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A Coronavirus Update for the COPD Community

Posted on June 09, 2020   |   
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This article was written by Jamie Sullivan, MPH and reviewed by the COPD Foundation Medical and Scientific Advisory Committee (MASAC)


Updates from June 9, 2020

When the COVID-19 pandemic started, most non-urgent healthcare services were postponed or switched to telehealth when possible. This was done to minimize exposure to the virus and to free up healthcare capacity and personal protective equipment supplies to prepare for a COVID-19 surge. As Dr. Byron Thomashow stressed on our May 21st webinar, COVID-19 does not mean other medical problems no longer exist and importantly, calling it elective medical care does not mean there is not an underlying problem that needs to be addressed.

As the country begins to reopen, healthcare systems have followed suit, expanding the types of care they are offering in-person and restarting testing and surgical programs to some degree. As is the case with your decisions about going out in public, the considerations for whether you, as someone living with COPD, should resume non-urgent medical care are slightly different. There is no universal answer to questions about going to an in-person doctor’s visit, doing your annual pulmonary function testing, resuming evaluations for surgical procedures, and other important care.

Your answer will likely depend on a number of different factors, including if telehealth is still an option for the care you need, how severe the COVID-19 outbreak is in your community, the types of precautions the medical facility has put into place, the risks of waiting if you choose not to seek care, the preparation and recovery process associated with the care, and more. Since no organization can make this decision for you, we have outlined a few critical questions to use as you engage in your discussions with your family and healthcare team. You can access the handout, Considerations for Resuming In Person Healthcare here and we welcome your input on other resources that you would find helpful as we begin to reopen in a time when the virus is certainly still present and circulating in many communities.

Finally, please remember that the best way to prevent COVID-19 is to stay home whenever possible, wear a mask when you go out and always wash your hands frequently!

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

A Message to the COPD360social Community

Posted on June 23, 2020   |   
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This article was written by Jamie Sullivan, MPH


Hi Friends,

Earlier today I sent the below message to our State Captain Network, but I wanted to share it with you as well. I consider all of you as part of our extended family of advocates and champions for the community and I am so grateful for all that you do to support each other and for how you support the COPD Foundation team. It is very bittersweet to post this but rest assured it is not goodbye for good, I am an honorary member of this community for life and will always carry your voices forward in my work.

Dear State Captains,

Sixteen years ago I was a college student in Miami staring at a job board I saw on a walk across campus when my eye caught a listing for an off-campus work-study position for a place called the Alpha-1 Foundation. The prospect of working somewhere other than a campus office filing and answering calls was thrilling but little did I know this chance walk by the job board would shape the rest of my life in the way that it has.

Over the next decade, I was privileged to learn from the best. John Walsh, the founder of both the Alpha-1 and COPD Foundations, was one of a kind for so many reasons, including his ability to build organizations, innovative programs, and consensus where people thought it was impossible. He was also a one of a kind boss. He believed in his team and this act of having more confidence in me than I probably deserved at such a young age, taught me I could not only find creative ways to make John’s ideas a reality, but I could seek out and form ideas on my own. His commitment to the notion that if you have a role in the problem you are trying to solve, you have a role in the solution, shaped my approach to building impactful collaborations and above all, his firm belief in the role that patients and caregivers play in ALL conversations, scientific, clinical, policy and more, will ground all future work I do.

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Categories: Personal Stories

The PF Perspectives Project

Posted on June 17, 2020   |   
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The article was written by Ruth Tal-Singer, PhD

The COPD Foundation is partnering with the Three Lakes Foundation on a common mission of improving the lives of individuals living with Chronic lung diseases.

Pulmonary fibrosis (PF) is a lung disease that happens when lung tissue becomes damaged and a thickened, stiff scar tissue makes it difficult for the lungs to function. PF symptoms include persistent cough, shortness of breath and fatigue. Some individuals with PF also have a diagnosis of COPD.

We are sharing with you an important message to Patients, caregivers and healthcare professionals: Pulmonary Fibrosis (PF) innovators want to hear from YOU.

To find new innovations that will make a difference for the 3-million people living with PF worldwide, Three Lakes Foundation and MATTER have partnered to launch the PF Perspectives Project. The project aims to find and amplify stories of people in the PF community and — through the learnings of those stories — identify the types of solutions needed and work with innovators to develop them.

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Categories: Related COPD News

Highlights from COVID-19 Survey #2: Pandemic Impact on the COPD Community

Posted on June 11, 2020   |   
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The article was written by Delia Prieto, BSEd, MSEd, Danielle Boyce, MPH, Bill Clark, and Ruth Tal-Singer, PhD


The COPD Foundation (COPDF) continues to monitor the impact of coronavirus disease 2019 (COVID-19) on the COPD and other chronic lung disease communities. We are using surveys to learn how the ongoing pandemic is affecting our community. The results will help us develop resources and programs that address the needs of our community of patients, families, caregivers, health care professionals and researchers. We keep the community informed through a dedicated webpage on COVID-19, and other regularly updated resources.

On March 29th, we launched the first of a series of global surveys to evaluate the experience of individuals affected by COPD and related lung diseases during the COVID-19 pandemic. As planned, we reported important results of Survey #1 in a COPD Digest post, which can be found here. Survey #2 was available online between April 26th and May 31st and was completed by 776 respondents. It included the same questions from Survey #1 as well as more detailed questions. Below are some highlights of the results from respondents who reported having COPD. It is important to note that not all respondents answered every question, so the percentages reported reflect only the respondents who answered that particular question.

Profile of Respondents with COPD

There was a total of 595 who answered the survey and reported they have COPD, chronic bronchitis or emphysema, equating to 77% of all who answered Survey #2. The majority (95.4%, n=564) of those with COPD were from the United States. Those not from the United States were from Europe (2.4%, n=14) or “Other” locations (2.2%, n=13): Canada, India, Pakistan, Australia and England.

Given the overlap between COPD and other lung conditions such as bronchiectasis, we also asked whether or not they had bronchiectasis, nontuberculous mycobacterial (NTM) lung disease, or alpha-1 antitrypsin deficiency. Those with COPD also reported having bronchiectasis (16.0%, n=92); NTM lung disease (1.9%, n=11); both, bronchiectasis and NTM (4.4%, n=25); or alpha-1 antitrypsin deficiency (3.5%, n=21).

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

NTM Lung Disease: Treatment and Management and What you Need to Know

Posted on June 09, 2020   |   
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This post was authored by Jane Martin, BA, CRT

This is the third in a series of four blog posts on nontuberculous mycobacterial (NTM) lung disease. Thank you to NTM lung disease patient, Diane L. Gregg, for sharing the patient perspectives in this post.

Experiences with NTM lung disease vary for each patient, and the information included in this blog post is not intended as medical advice. For more information about your specific situation, please consult your health care provider.

In the first two blog posts in this series, we learned about NTM lung disease, what it has in common with COPD, what causes it, and how it is diagnosed.

Now let’s look at how NTM lung disease can be managed and treated.

When a person has been diagnosed with NTM lung disease, it is helpful for that individual and their health care provider to sit down and talk about options for management, including if treatment is needed. They can discuss potential risks and benefits, always keeping in mind the importance of the patient’s quality of life.1

Treatment

Always check with a health care provider before making any changes to an approved treatment plan.

Treatment for NTM lung disease may include antibiotic medications. Usually, more than one antibiotic is prescribed in order to prevent the bacteria from becoming resistant.*2 It’s most helpful for health care providers and patients to work together to figure out which combination of medications will be the right option for them.

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Categories: Education, Resources and Studies

An interview with Diane Gregg, a person living with nontuberculous mycobacterial (NTM) lung disease

Posted on May 12, 2020   |   
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This article was written by Bret Denning, JD.


Diane L. Gregg is an individual living with NTM lung disease. She is a retired clinical social worker who spent her career working in various health care settings where she worked as a clinician and Director of Social Work and Human Services. Diane is currently working to complete a certificate program to become a mindfulness meditation teacher. She lives in the Chicago area with her two kitties and enjoys being a grandmother.

Thank you for talking with us today, Diane. Can you tell us more about your initial NTM lung disease symptoms?

I was diagnosed with NTM lung disease in early 2014. I began having symptoms a few months earlier. Initially I just felt extremely fatigued. I can't emphasize that enough. I had a hard time even making it home from work without falling asleep. This was very unusual for me because I'm a high energy person.

About six weeks after the fatigue started, I began coughing. It was an intermittent cough. I didn’t think too much about it until my friends and family began remarking, "Oh, you’ve been coughing a lot and it’s a really deep cough." Hearing that from them, and also getting pneumonia a few months later, made me decide to follow up with my doctor.

What tests did the doctors do to diagnose your NTM lung disease?

The first test the pulmonologist ordered was a chest X-ray. That test confirmed that I had pneumonia. I was told that the air sacs in my lungs were enlarged in what they called a “tree in bud” pattern, which indicated NTM lung disease.

I put off having a bronchoscopy for about six months because I had had a bad experience with a bronchoscopy many years before in another city. It just was scary to me. But I finally had a bronchoscopy, and that confirmed my diagnosis of NTM lung disease.

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Categories: Education, Resources and Studies Personal Stories Tips for Healthy Living

COPD and COVID-19: A Report from a Rural Community

Posted on May 07, 2020   |   
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This article was written by Kandy Blankartz, a COPD Foundation State Captain for the State of South Dakota. She wanted to share with the community about how COVID-19 has impacted her small town in rural South Dakota.


Hi, I am Kandy Blankartz, State Captain of South Dakota. I wanted to give you a little glimpse of how things are going here since I do live in a rural area of North Central SD. The town I live in is very small with a population of 3,465 people and am about 100 miles away from the nearest big city.

This COVID virus outbreak is very scary for us all but with those of us with underlining conditions such as lung disease, heart problems, diabetes, and cancer make it very hard to deal with. We have to take all the precautions and more for us to prevent this virus. I keep up on the news about this COVID virus for South Dakota every day especially for my county. We had 5 cases all in one family here in town. We all know them well. They have recovered -every one of them. So far, no other outbreak in this county, which is Walworth County. There are 2 close counties with no virus and one county which has 1 case reported and they have recovered. Hope we can keep it this way. It is a big worry for all of us in this rural community.

Life here has really changed. The officials here have closed inside dining places and restaurants only have drive-up. There was no prom for the high school. There still trying to figure out how to have graduation in May. The school kids are all doing schoolwork at home via the schoolteachers. This is really putting a strain on all of the parents and teachers. My daughter had to video chat a niece to help her with schoolwork. The grocery stores and dollar stores are open, but tape is placed on floor to keep everyone 6 ft apart. We have social distancing here with keeping 6 ft apart, and only 10 in a crowd, but I see no one in crowds. Now more people are wearing masks in public. My daughter is attempting to make some for family members. For me it’s very hard to wear a mask and breathe.

I think our medical clinic here is prepared and ready as best they can for this. I am worried the most about a big pandemic here. I think we only have a 25-bed hospital. You are to call before coming if you think you have the COVID virus. They come out and test you at your car. We got the new rapid testing machine from the state this last week.

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Categories: Personal Stories

Staying Active During Safer-at-Home

Posted on April 27, 2020   |   
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This article was written by Richard Casaburi, MD, PhD and Harry Rossiter, PhD


People who have participated in COPD360social cannot have escaped the message that maintaining activity is important in maintaining health. Pulmonary rehabilitation, one of the best therapies we have to offer for COPD, aims to encourage higher levels of activity in everyday life. We are now in the middle of a crisis in which one of the unintended and underappreciated consequences will be to reduce the level of daily activities in millions of people.

What are the consequences likely to be? We have clues from studies conducted years ago in which researchers studied the effects of 20 days of voluntary strict bed rest in young healthy subjects. Tests conducted before and after this 20-day period revealed that exercise capacity (the ability to perform high levels of activity) was reduced by about 30%. These subjects then went back to their normal lives, and normal activities. Interestingly, these same people had their exercise capacity determined 30 years later…when they were in their 50s. Their exercise capacity was about the same as it had been after 20 days of bed rest. The startling implication: 20 days of bed rest had the same detrimental effects as 30 years of ageing!

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

Exploring the COPD Patient and Caregivers Experience with COVID-19 through Surveys: Highlights from Survey #1

Posted on April 22, 2020   |   
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The article was written by Ruth Tal-Singer, PhD, Delia Prieto, BSEd, MSEd, Vincent Malanga, BS, MCP, Bill Clark and Danielle Boyce, MPH


COVID-19 Survey Results | COPD360

The COPD Foundation “COPD360” approach mobilizes partnerships between patients, caregivers, healthcare professionals, researchers, academic institutions, government agencies and industry leaders with a common mission of preventing COPD disease progression, and improving the lives of those affected. The COVID-19 pandemic has put individuals with COPD and other comorbidities at a high risk for poor outcomes, so the COPD Foundation is focused on keeping the community informed on emerging developments. COPD360social is serving a critically important role in our communications with the COPD community about COVID-19 and the specific needs and risks that may be faced by the individual with COPD.

Between March 29th and April 13th, we launched the first of a series of global surveys that aim to evaluate the experience of COPD patients during the COVID-19 pandemic. The survey was promoted via COPD360social and other COPD Foundation resources. Below is a first look at some of the data.

  • A total of 566 COPD360social members responded, including 513 COPD patients (332 former smokers, 67 current smokers and 37 never smokers), 12 caregivers, 18 healthcare providers, and 14 family members or individuals with asthma).
  • Bronchiectasis was reported by 98 of the participants (2 without COPD)
  • 177 COPD participants experienced an exacerbation in 2020
  • 16 participants (3%) were told they had COVID-19 by a healthcare provider. Of these 16 participants, 6 of them were actually tested for COVID-19 and only 2 of them received positive test results confirming the COVID-19 presence. Additionally, 2 of them were hospitalized for over a week.
    This number is consistent with other data showing that the incidence of COVID-19 is not higher in people with COPD, but the outcome (hospitalization) is worse. The results suggest that testing is underutilized in this at-risk population.

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

COPD and COVID-19: A View from Florida’s Retirement Communities

Posted on April 18, 2020   |   
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This article was written by Pam DeNardo, a COPD patient advocate and part of our COPD Foundation team. If you are interested in sharing your stories about living with COPD during the COVID-19 pandemic, please email us at statecaptains@copdfoundation.org.


I am a semi-retired single woman living in a 55 and over retirement community of over one thousand units in a village like setting in Fort Myers, Florida. The social activities here are many and well attended. Golf Course, six pools, tennis courts and gym to name a few. We even have our own restaurant. So, you can imagine it's pretty lively here. Until recently. I look out my windows now and see no one. In the early mornings and just before the sun goes down you will see people walking and keeping safe distances. It's a little comical as everyone wants to talk but they have to holler at each other in order to be heard.

Usually at this time of year the snowbirds leave, and the community slows down. This year however, the northerners don't want to go home. Especially if they come from a "hot spot". Now that Florida's numbers are climbing that may change.

As a COPD patient of 20 years I am pretty resilient and I am used to some isolation. And working with the COPD community I have been pretty much oblivious of how others with different physical problems cope. Since the pandemic I have seen some incredible acts of humanity and kindness and am amazed at how we can make this work socially. On my birthday some of my neighbors put a cake by my front door and sang happy birthday from the street. I will be in the next group for the next birthday.

I have had to adjust how I shop. Drug stores are no problem as I order online (or doc calls it in) they tell me when to pick up and I use drive up. Grocery stores are a little more difficult. At first, I tried to shop in person as usual. Waiting to get in, trying to keep 6 feet of distance, (especially while others were not), wiping things down before I picked them up, checking out and finally going home only to have to wipe everything down again before putting away. I found all this exhausting and needed a nap.

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Categories: Coronavirus (COVID-19) Personal Stories

Ted Koppel Talks Nightline, COVID-19 and Its Impact on Those with COPD

Posted on April 17, 2020   |   
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Forty years ago, Ted Koppel was chosen to host Nightline, a television show focusing on a growing international story: the Iran hostage crisis that gripped the nation for 444 days. As he recently looked back on that time in an interview with ABC News, Koppel compared it to the current COVID-19 crisis and how the virus is affecting the COPD community. His wife, Grace Anne Dorney Koppel, has lived with COPD for nearly 20 years. She previously served as the Interim President and Board Member of the COPD Foundation and she and her husband remain fierce advocates for individuals with COPD and their families.

COPD is an umbrella term that includes emphysema and chronic bronchitis. In the interview, Koppel emphasized the need for more attention to COPD and connected for viewers how COVID-19 is particularly relevant to those living with COPD. COPD is a respiratory illness that kills more than 155,000 Americans every year and COVID-19 is a disease with substantial impact on the lungs. Koppel states that there may be no group more vulnerable to COVID-19 than those people affected by COPD.

He noted that many people only begin to take a public health threat like COVID-19 seriously when it affects someone close to them and that people will, as the weeks and months pass and more people are impacted, “wake up” and attend to the evolving threat. He stated that more people will be directly affected as the virus spreads; he hopes that the country will understand how serious and how damaging this virus is and take steps to prepare and act accordingly.

Koppel pointed out that unlike the Iranian hostage crisis, the crisis of COVID-19 more directly impacts the daily lives of the American people. He also focused on the importance of individuals seeking out high-quality, trusted information regarding COVID-19 and the necessity for journalists to do be able to provide factual information to the population. Too much false information is being spread, Koppel states, particularly over the internet. Now is the time to not only respect but to reinforce the legitimacy of the media and the important role they play in our society.

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Categories: Advocacy Community Announcements Education, Resources and Studies

Sheltering in Place While Living with COPD

Posted on April 06, 2020   |   
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This article was written by John Linnell. John is a COPD Patient diagnosed in 2005 and left the workforce in 2011. After being involved in an internet awareness film and sharing his story, John decided his efforts would be best spent doing advocacy work for the COPD community. John is a member of the Board of Directors for the US COPD Coalition and is a COPD Foundation State Captain for Wisconsin. He also serves on the Executive Board of Directors for EFFORTS (an international support group for COPD) as well as on the Governing Board for the COPD PPRN (Patient Powered Research Network) for PCORI.

As a COPD patient and patient advocate, the current COVID-19 pandemic brings to mind so many thoughts, tips for fellow patients, and yet hope for us all.

My initial thought, a few weeks ago, was “Well, welcome to my world”. The COPD patient has always had to be cautious and protect against respiratory infections. It’s how we live. Now, the entire world is having to. Then, I realized that this was an incredibly selfish thought. Why would I want to “welcome” anyone to this type of life? So, it became a moment of teaching and sharing! Here are some tips to help us get through this most unusual time - tips for all of us, not just those with respiratory issues such as COPD:

  • Stay home - Just stay home whenever possible. I am finding it a good time to catch up on the many “to-do’s” that keep getting put on the back burner. It’s a great time to work on a hobby. For myself, I like to cook and have made a wonderful Chocolate Ganache Tart, a loaf of Amish Sweet Bread, a new recipe for Chicken Fettuccine Alfredo, and some Coconut Shrimp. It also was the perfect occasion to clean out the freezer (you do not want to know what all was found).
  • Arrange in advance (now) for friends/family to be able to run errands for you should need be. This will get worse, and it may be unsafe to leave your home...period. While not wanting to put others at risk, it may be safe for them but not for you. Nonetheless, it is a conversation best had now and not later.
  • When possible, order refills of medications you may be taking, especially inhaled medications. Pharmacies might be willing to refill a little time before the refill is technically due. (I say this with hope, not with foreknowledge.) Check on your levels of other needed supplies. Don’t buy the shelves bare but do have enough for a month or so. The supply chain is still working. Toilet paper is still being manufactured.
  • Stay active!! You can still go for walks, take the dog out, get some fresh air. Do so only when not in densely populated areas and be sure to maintain distance from others that are hopefully outdoors doing the same. This “sheltering in place” should surely not be taken as a directive to just sit on the couch and watch every single rerun of I Love Lucy (although, I do love Lucy). This is especially directed at those of us with respiratory diseases. Inactivity is a slippery slope, indeed. “The Less We Do, The Less We Are Able to Do” No treadmill? Then walk in place if you can’t or shouldn’t go outside. There are also many online pulmonary exercise options that are currently being provided at no cost in order to help us through this!!
  • Practice “physical distancing”. I personally do not like the phrase “social distancing”. We need to be social; we need each other now more than ever! We simply need to be physically apart…...but we must be social to maintain our sanity. Be a friend! Maybe this is a good time to make a phone call to that old buddy or friend that you had been thinking about. Don’t text,,,call them!! Reconnect. Be social. You can take the lead and make this first step. I did, and it was so fun reconnecting and sharing memories.
  • Consider practicing Mindful Awareness, meditation, yoga, or getting lost in a good book. Whether you like it or not, you certainly now have the time to do just that.
  • Keep somewhat of a schedule, lest you get lost in the day and wind up accomplishing nothing. Have set mealtimes. Set aside times to read, meditate, or just relax. Hold yourself accountable for getting your daily goals accomplished so as not to fritter away the day. Even for those of us that already are homebound due to our COPD or other respiratory condition, this can be an awakening - Do we really make the best use of our time? For myself, I have learned a lot and changed my pattern. I get more done, yet I somehow seem to have more “me” time.
  • Get and/or stay involved with peer support groups on social media. You need the ongoing support as well as the other members are needing you as well. They worry about you and welcome your participation. You count, so be present for them. One excellent group is the COPD Foundation’s COPD360Social
  • Advocate!! You still have a voice, and now you certainly have the time. Write to your legislators, both local and Federal, asking for their support in: - asking CMS to waive formulary restrictions on inhaled medications; - ask CMS and Congress to allow at least a temporarily allowing RRTs (respiratory therapists) to be able to practice via telehealth, home visits, and relaxing the supervisory requirements under Plan B. (You can access the full request from the US COPD Coalition)

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Categories: Coronavirus (COVID-19) Personal Stories

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