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A Coronavirus Update for the COPD Community

Posted on March 24, 2020   |   
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Updates from March 27, 2020

COVID-19 Policy Issues and What the COPD Foundation is Doing

At a time of immediate crisis, policy issues might be far from the top of your mind, but nonetheless, there is important work going on here in DC that could impact how we deal with the crisis and what resources are available to support our community. With that in mind, I want to take a moment to fill you in on what the COPD Foundation has been doing to bring your voice into these conversations and what we can expect in the coming days and weeks.

Our advocacy efforts are focused first on issues that could directly impact people with COPD as a result of the COVID-19 pandemic, but we are also joining with our patient and healthcare professional partners on broader issues central to our country’s response to COVID-19. The COPD Foundation is committed to making sure your voices are heard as the nation continues to deliberate how best to respond.

Here are a few highlights of recent issues we have weighed in on with Congress and with the Centers for Medicare and Medicaid Services (CMS). Do you see issues that you feel like are not represented in this list and that are likely to have an impact on your life and community as a result of COVID-19? Please speak up, share your concerns and discuss how we can all mutually support each other so we can carry your voices to policymakers here in DC.

Waivers: In a time of emergency, CMS can issue waivers that change their rules temporarily. Sometimes these waivers are mandated by Congress through legislation. Waivers issued by CMS technically only apply to people in Medicare and sometimes Medicaid, but in many cases, they set the tone for what private commercial insurance companies will decide to do as well.

Oxygen: We joined with patient and professional groups to ask CMS to issue a waiver to remove the requirements for in-person certification and recertification visits for someone on oxygen therapy. We also asked that they clarify they will accept other proof of delivery methods rather than signature as is currently required. We do not want people on oxygen to risk exposure to COVID-19 for these routine certification appointments and would prefer fully contactless delivery of oxygen equipment.

Home Infusions: People with alpha-1 antitrypsin deficiency-related COPD rely on a weekly infusion of augmentation therapy as a vital part of their treatment regimen. Currently, Medicare only covers augmentation therapy when it is given in a healthcare setting like an infusion center or hospital clinic, even though it can be safely administered at home by trained professionals. We urged Congress to include a waiver that will allow people with Alpha-1 and others who use infused therapies in Medicare to avoid unnecessary exposure and get their treatments at home.

Telehealth and Respiratory Therapists: We joined with the U.S. COPD Coalition partners in asking for a waiver to allow respiratory therapists to provide COPD management services via telehealth during the health emergency. We also supported the policies included in the first COVID-19 related legislation to ease restrictions on where and how telehealth services are provided. The time is now to unleash the power of telehealth to allow you to keep up with your COPD management while avoiding COVID-19 exposure. Respiratory therapists are well qualified to provide many important education and management services.

Cost and Coverage Related Issues: There has been a lot of coverage in the media about making COVID-19 testing free, but there are other concerns that require CMS and Congress to act to protect people from burdensome unexpected out of pocket costs and from losing access to their routine treatments.

90-Day Medication Supply: We joined group calls for Congress to require insurance companies, including Medicare Part D plans, to authorize a one-time 90-day refill of medications to minimize trips to the pharmacy. We also hope that this is done in a way that limits out of pocket costs, especially for those who are still within their plan’s deductible.

Formulary Restrictions and the Supply Chain: The patient advocacy community is also paying close attention to any potential issues with medication supplies and urged Congress to clarify that insurance companies must waive restrictive formulary requirements and allow patients to access any available equivalent medications if shortages of particular brands arise in the coming months. We also supported closer monitoring of supply chain issues by the FDA so we can be prepared to address any issues proactively.

Coverage: A time of national health emergency is not a time to lose or be without health insurance, so we advocated for numerous coverage-related policies like special enrollment periods to allow uninsured to enroll in eligible plans, protection of Medicaid benefits and others.

Nonprofit Relief Issues: We understand that people are facing extreme economic consequences and some of these same forces are affecting the nonprofit community now and likely into the remainder of the year. The National Health Council, an association lead by patient advocacy organizations, is leading efforts, along with other non-health related nonprofits, to ensure economic relief legislation that Congress passes incorporates the needs of nonprofits who are serving their communities in this time of need. In particular, we joined the calls to advocate that tax deductions for charitable giving be eligible for deductions even if people don’t itemize and to make nonprofits eligible to apply for small business grants and loan programs if they have faced economic hardships from COVID-19 related demands.

There are so many moving pieces of our country’s response to COVID-19, but these are just a few of the issues we felt strongly about. We will keep you posted as things evolve and do speak up if there is an issue affecting you or your community that might not be reflected yet in current COVID-19 related advocacy efforts.

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Categories: Education, Resources and Studies

Teaching with a Twist – Quitting Smoking: Why should you?

Posted on March 13, 2020   |   
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Quitting smoking. It is a subject that triggers a variety of reactions from people when you bring it up. Some people get defensive, some get argumentative, and some seem to appreciate the concern behind the question. I know this because I am one of the annoying people who will bring it up. If you have been on COPD360social a while, or if you have read other things I have posted, you might know that I am a respiratory therapist with many years of experience in caring for people in the hospital, pulmonary rehab, skilled nursing facilities, and as part of a home care team. In each of those different settings I brought up the topic of quitting smoking. And even here, on this forum, I’m doing it again.

Let’s start off by doing a little level setting. I am not going to spend time talking about the reasons you should quit – damaging your lungs, increased risk of cancer, or heart disease. If you are an adult human who has lived in proximity to the news or other media, you already know all of those things about smoking. For your own reasons, those reasons alone are not enough to motivate you to quit. So, let’s move to another level of motivation.

If you were in one of my smoking cessation classes, I would ask you why you keep trying to quit smoking. What keeps drawing you back to the notion to quit? Write that reason(s) down. Now think about why you still smoke. Think it through honestly and write it down, too. You don’t need to show these reasons to anyone – they are personal. Do you believe smoking is a habit that you can quit, or do you think it is an addiction? Several years ago, I found a simple test that can help answer that question. It is called the Fagerstrom Test and a link to it can be found here. Once you determine if you are dealing with a habit or an addiction, it can help you talk to your doctor about a plan to quit. Go ahead and take the test and score before reading on.

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Categories: Education, Resources and Studies Tips for Healthy Living

Let’s Talk About Nontuberculous Mycobacterial (NTM) Lung Disease

Posted on March 09, 2020   |   
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This article was written by Bret Denning, JD.


How much do you know about NTM lung disease – a disease that is becoming more common in the United States – and how it could affect people living with other chronic lung diseases such as COPD or bronchiectasis who are at greater risk of developing the condition? Learn this and more from the COPD Foundation’s one-hour Let’s Talk About NTM Lung Disease webinar recording. Topics include how to identify signs and symptoms of NTM lung disease and limit exposure to the bacteria that causes this condition.

We were joined by two very special panelists, Dr. Ashwin Basavaraj of Bellevue Hospital Center and NYU School of Medicine, and John Torrence, an individual living with NTM lung disease and bronchiectasis. Dr. Basavaraj provided an overview of the disease, including symptoms, risk factors, diagnosis and treatment. Mr. Torrence offered insights on his experience with NTM lung disease and provided tips on advocating for yourself and what has made for a collaborative relationship between he and his healthcare team. The webinar ended with an opportunity for attendees to ask questions of the two speakers.

Watch the Webinar Recording

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Categories: Education, Resources and Studies Events

Women and Bronchiectasis

Posted on March 04, 2020   |   
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As we celebrate International Women’s Day, we turn our attention to how bronchiectasis uniquely affects women and the impact that has on gender equality in healthcare and what can be done.

As we noted in a previous blog post, bronchiectasis is often difficult to diagnose because it can have similar symptoms to COPD, and some people have both COPD and bronchiectasis. What researchers do know is that bronchiectasis can have a more significant impact on women than on men. Studies have shown that women are more likely to develop bronchiectasis at an earlier age and may have more severe cases of it affecting health and, a poorer lung function.

Why does bronchiectasis affect women more than men?

Some of the reasons are simply physical. Women generally have smaller lungs and therefore smaller airways, which could have an impact on mucus production and ability to clear mucus from the airways. Additionally, some research has shown that certain female hormones affect airway disease activity, although the exact reason is still not known.

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Categories: Advocacy Community Announcements Education, Resources and Studies

Lung Research at 50: A Q and A with Dr. James Kiley on the 50th year of the National Heart, Lung, and Blood Institute and what lies ahead

Posted on February 26, 2020   |   
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The National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health, is responsible for funding the majority of COPD-related government-supported research. Without the research that NHLBI funds, it would be nearly impossible for other stakeholders to develop new treatments and deliver care that improves health and quality of life. While we will never stop advocating for the NHLBI to invest more in COPD research, their accomplishments and their commitment to meeting the needs of people with COPD is without question.

Throughout 2019, the pulmonary community celebrated a milestone in medical research, the 50th anniversary of the NHLBI. What does the 50th anniversary mean for the COPD community? What does the dedicated team at the NHLBI hope for the future of COPD research? To explore these questions and more, Dr. James Kiley, the Director of NHLBI’s Division of Lung Diseases and was kind enough to participate in our Q and A.

Dr. Kiley touches on the mission of the NHLBI, how research has contributed to the differences in patient’s lives today compared to 50 years ago and more.

We also asked leaders of the COPD Foundation Scientific and Medical team: Dr. Barbara Yawn, Dr. Ruth Tal-Singer and Dr. Byron Thomashow what they are most excited about as we enter the next decade of partnerships with the NHLBI and the research community.

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Categories: Advocacy Education, Resources and Studies Health Policy and COPD

Bronchiectasis: Symptoms and Diagnosis

Posted on February 26, 2020   |   
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In our previous post, we talked about what bronchiectasis is and who can get it. Now we will review some of the symptoms and how it can be diagnosed.

Symptoms

Symptoms of bronchiectasis may include frequent coughing, sputum (mucus) production, fatigue, repeated chest infections, shortness of breath, unexplained fever, chills, sweats, weight loss and in extreme cases, coughing up blood (hemoptysis). There is often no cure for bronchiectasis, but it can be treated.

Diagnosis

Bronchiectasis is often confused with COPD or asthma. In many cases, symptoms are similar, leading to misdiagnosis and ineffective treatment. When a patient is experiencing respiratory infections that are Severe, Persistent, Unusual or Recurrent (frequent) or “SPUR” (as a reminder tip), healthcare providers should consider if it may be bronchiectasis. The provider can identify additional factors, such as family history, that would suggest added testing, and if a patient should be referred to a pulmonary specialist to help diagnose the issue.

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Categories: Education, Resources and Studies

NTM Lung Disease: How it is Diagnosed and What you Need to Know

Posted on February 24, 2020   |   
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In our first blog post we learned about nontuberculous mycobacteria (NTM) and the disease it causes, NTM lung disease. Like COPD, NTM lung disease is a chronic, progressive disease that makes it hard to breathe. Common symptoms of NTM lung disease are shortness of breath, fever, weight loss, chronic cough, fatigue, and chest pain.i Some of these symptoms can also be found in COPD, bronchiectasis, and asthma, the very conditions that increase the risk for getting NTM lung disease.ii This increased risk exists because damage from these conditions can make it easier for NTM bacteria to infect the lungs. All of this can make diagnosing NTM lung disease complex.

Sometimes this challenge may cause a delay in diagnosis and treatment. Untreated symptoms can get worse and cause more damage to the lungs. This means that a delay in the diagnosis of NTM lung disease can make the condition worse.iii Even so, the good news is that NTM lung disease can be successfully diagnosed and that treatment options are available.

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Categories: Education, Resources and Studies Health Policy and COPD Tips for Healthy Living

Why is it important to use your COPD inhalers correctly and regularly?

Posted on January 29, 2020   |   
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Regular and correct use of inhaled medicines helps control symptoms of chronic obstructive pulmonary disease (COPD). However, your medicines will only work if you use your inhaler properly. Correct inhaler use makes sure that the right amount of medicine reaches your lungs. However, many different types of inhalers are available, and each requires a different technique. It is helpful if your doctor or a medical professional shows you how to use the inhaler prescribed to you.

What is meant by proper inhaler technique?

Your ability to use your inhaler properly, with the correct breathing technique, can affect your lung health.1 This is referred to as “inhaler technique” and can differ from inhaler to inhaler. Using the wrong inhaler technique means that less medicine reaches your lungs.1,2 This can make you feel worse and put you at a greater risk of hospitalization.1 There are two main ways to take your inhaled medicine—using an inhaler or a nebulizer. Inhalers are small devices that can be held in your hand and are easy to carry.3 Three basic types of inhalers are available—a pressurized metered-dose inhaler (pMDI), a dry-powder inhaler (DPI), and a slow-/soft-mist inhaler (SMI).3 Nebulizers are machines that are usually larger than inhalers. Many nebulizers are not easy to carry around,3 but some new ones have been made to carry with you.3,4 You probably use one or more of these inhalers or nebulizers to take your COPD medicines. This piece will focus on the non-nebulized inhalers.

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Categories: Education, Resources and Studies Tips for Healthy Living

Bronchiectasis: The Phantom Menace

Posted on January 13, 2020   |   
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You may know that COPD is an “umbrella term” describing progressive lung diseases including emphysema, chronic bronchitis, and refractory (non-reversible) asthma and chronic bronchitis.* But there is another lung condition that is often overlooked because of its similarity to COPD: Bronchiectasis (brong-ke-EK-ta-sis). To help raise more awareness of this condition and who it may be impacting, we’ll be sharing six posts over the upcoming year.

What is bronchiectasis?

Bronchiectasis is a disease of the small airways that leads to damage of the airway walls. This makes it difficult for people to clear out mucus from the lungs by coughing. One of the key differences from chronic bronchitis is that in bronchiectasis, the inner diameter of the airway can actually get wider. That may seem like a good thing but it isn’t. With scarring and thickening of the airway walls, widening of the airways is what makes it harder to clear out mucus. When mucus is not cleared out bacteria can start growing, which can lead to severe and repeated infections.

How severe?

Some people live with both COPD and bronchiectasis and don’t know it. One study found that in one year alone, 93% of these people had at least two health events (or exacerbations) like needing antibiotics, or a hospitalization relating to respiratory infections. Frequent events often result in major flare-ups in symptoms, and can lead to permanent loss of lung function, increase in additional symptoms, higher rates of disability or even loss of life. Even in those who did not experience frequent flare-ups, 90% of those who had pneumonia were found to have some bronchiectasis.

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Categories: Education, Resources and Studies

Diagnostic decisions: what is spirometry and why is it important?

Posted on January 09, 2020   |   
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What is spirometry?

Spirometry is a common breathing test that assesses how well your lungs work. The test measures how quickly and how much air you can breathe in and out.1 It is part of the testing done with full pulmonary function testing which may include other assessments (see below). During normal breathing, air flows in and out of your lungs freely. However, people with chronic obstructive pulmonary disease (COPD) have a hard time breathing out, and therefore too much air stays in their lungs.2 This is known as “air trapping” and is one of the causes of feeling short of breath.2 Spirometry is an important test that should be done in addition to asking about your symptoms and medical history when COPD is diagnosed.2 Spirometry can help decide what medicines you will take and it can be used to follow your lung health over time.2

What happens during spirometry?

On the day of your test, your doctor may ask that you do not take your COPD medicine, do not wear tight clothing, and do not eat a large meal for two to four hours before your test. When you arrive, a person in your doctor’s office will explain the test and what you need to do. The test takes about 30 to 45 minutes to complete.1 Here is what to expect during your spirometry test1,3:

  • You will be seated upright in a chair, and a clip will be placed on your nose to keep you from breathing through your nose.
  • With a mouthpiece connected to the spirometer, you will be asked to take a deep breath in, so that your lungs are completely filled with air, and then to breathe out as hard and fast as you can for six to eight seconds—until your lungs are emptied as much as possible.
  • You will be asked to repeat these steps at least three times to make sure a that the test result is right.

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Categories: Education, Resources and Studies Tips for Healthy Living

What does it mean when COPD symptoms are controlled? Part 2

Posted on December 17, 2019   |   
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As a person living with and being treated for COPD you have your own “normal” (or baseline) symptoms, which can change in type and severity over time as your lungs age.1,2 Knowing your baseline symptom level using the COPD Foundation patient app3 allows you and your clinician to understand when the symptoms are getting worse or becoming uncontrolled (See: What does it mean when COPD symptoms are “controlled”? Part 1 for more information). Following your symptoms and what you can do daily may also encourage you to try and improve your ‘normal,’ giving you a better quality of life.

How are you affected over time with the changes in COPD symptoms?

Many of us cut down on our activity level, whether we realize it or not, to avoid certain COPD symptoms like feeling short of breath.4 Cutting down on physical activity like avoiding stairs or even avoid getting up to get a glass of water can actually work against you - decreased activity can lower your ability to do the things you want to do. It can also increase the chances of having a COPD exacerbation or even being hospitalized.5 Exacerbations or COPD “attacks” lead to more decrease in activity, more shortness of breath and then to greater difficulty doing daily activities, and loss of fitness.6

What is the impact of an exacerbation of COPD?

During a COPD flare up or an acute exacerbation, symptoms worsen, and breathing becomes even more difficult. Exacerbations decrease your overall health, comfort, and happiness (also known as quality of life) and can speed up lung function decline.7 Also, exacerbations can increase your risk of future exacerbation or hospitalizations, and can even be life threatening.7 So, all possible steps should be taken to prevent symptoms from becoming uncontrolled (Suggested reading: Avoiding exacerbations and pneumonia; Staying healthy and avoiding exacerbations; Staying healthy and avoiding Pneumonia).

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Categories: Education, Resources and Studies Tips for Healthy Living

The COPD National Action Plan: Where are we now and where are we headed?

Posted on December 16, 2019   |   
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The COPD National Action Plan, released in 2017, is a guide to how we can improve COPD outcomes in the United States. On November 13th, the community came together to share the progress that has been made against the Plan’s goals and to discuss how we collaborate and track progress moving into the next decade.

The COPD Foundation team was joined by five advocates who ensured the perspectives of those most affected by COPD were heard throughout the discussions. The day was broken into two parts, a morning session full of informative presentations from federal partners, advocacy organizations and health systems, and afternoon discussion sessions to brainstorm on how to effectively collaborate and track progress moving forward.

The day started with Dr. Tony Punturieri from the National Heart, Lung and Blood Institute’s (NHLBI) overview of their priorities and areas of progress such as the groundbreaking results coming from the COPDGene Study. Dr. Punturieri also discussed progress in understanding the role of smoking in COPD development, in dispelling the notion that COPD treatment is a one-size-fits-all approach, and in pushing early-stage disease-modifying research. He noted that they feel “the future and the present for COPD is bright.”

The next panel of speakers from federal agencies highlighted the progress made possible by the National Action Plan and your advocacy efforts. The Centers for Disease Control and Prevention (CDC) presented new data on the burden of COPD and how they are using the Behavioral Risk Factor Surveillance System (BRFSS) data to understand factors that may be associated with COPD outcomes in different areas of the country.

We dedicated much of the first years of our advocacy efforts to getting COPD questions on the BRFSS. Hundreds of patients contacted their state officials to make this happen. The results have yielded treasure troves of data about the burden of COPD in different geographic areas, but that isn’t all it can do. As more attention is focused on COPD in the public health space, the BRFSS COPD questions can now be layered with other data that show patterns of smoking history, comorbid diseases, and other health risk factors. The more we make COPD a part of the conversation in other health priority areas, the greater likelihood it lands on the radar of state and federal agency partners and the greater likelihood we can reach affected individuals.

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Categories: Advocacy Health Policy and COPD

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