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 Related COPD News

A Look at COPD from a Child's Eye

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We are all aware of the impact COPD has on the patient- the shortness of breath, fatigue, exacerbations, social isolation, and daily struggles are ever-present. But how does COPD affect those who bear witness to their loved one’s hardship? What are some of the challenges that caregivers, friends, and families experience? 300 million individuals live with COPD worldwide, but millions more lives are touched in one way or another by the disease.

The COPD Foundation worked with storytelling agency Make Believe UK and Novartis to create an new animated short called, “A Child’s Eye” to give viewers a glimpse into life with COPD from a loved one’s perspective. The story follows a young child in who slowly comes to grips with the reality of his grandfather’s COPD diagnosis. Activities they once enjoyed were no longer shared, with every missed event marked by a note from his grandfather wishing he were there. The story takes a positive turn when the child’s grandfather receives the education, community support, and treatment he needs. COPD is not a death sentence- early diagnosis, pulmonary rehabilitation, education, and support are all factors that can lend a new lease on life.

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Tags: A Child's Eye animation caregiving Make Believe UK
Categories: Related COPD News

Accessing Treatments in 2016 - What You Should Know

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This blog entry was written by Jamie Sullivan, Sr. Director of Public Policy and Advocacy at the COPD Foundation

The new year can often mean new policies on the medications that are covered for COPD patients, even when you are not switching insurance plans. As we approach January 1, the COPD Foundation wants to make sure you are prepared for any potential changes to what are referred to as formularies, the lists of drugs covered by your insurance company, and the costs you have to pay each month for those drugs. High copays, the set amount you pay at the pharmacy for each prescription you fill, have always been an issue patients struggle to keep up with. In the past, a new year would often mean higher copays for patients. Unfortunately in the last few years, some large insurance companies have excluded certain drugs from the formulary altogether. A few patients in our community have experienced this switch, so we suggest everyone take adequate measures to prepare. It is unlikely you will be affected, but it is important to plan just in case.

Here is what you can do today:

Drug Access
  • Call, email, or go online and ask your insurance company if there have been any major changes to the 2016 formulary. You can specifically tell them your medication and ask whether it will continue to be covered in 2016. Ask if there are any changes in your co-pays so you can budget accordingly.
  • If you are told that your medication will no longer be covered in 2016, ask whether they have an appeals process and send this information directly to your physician for help.
  • Tell us about your experience. Your insurance company is not your doctor and there should be no reason for what we call "non-medical switching", i.e. you and your doctor determine the best treatment, but the insurance company switches you for no medical reason at all. Fill out a quick survey and learn more about the issues today.

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Tags: Copay Drug Access Formularies Insurance Non-medical switch
Categories: Related COPD News

Shame and Blame

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The dreaded question for individuals living with COPD is, “Did you smoke?” So much is insinuated in three simple words, and so many in our community have to withstand the stigma associated with the disease. All too often, individuals living with COPD are afraid to reach out for help or seek treatment - let alone raise awareness - because they believe in the end they will be shamed and blamed for smoking.

While smoking is a primary cause of COPD, 25% of COPD patients have never smoked. Environmental, occupational, and genetic factors are also causes of respiratory disease. If you did or do smoke, however, you should know you are not alone. What is important now is not to look at the past with regret and shame, but to the future with strength and hope. No one has the right to take that away from you.

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Tags: blame COPD shame stigma
Categories: Related COPD News

COPD Global: 1st Latin American COPD Patient Leadership Summit

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On December 5, 2015, the 1st Latin American COPD Patient Leadership Summit, organized by the COPD Foundation and COPD Global, was held in Buenos Aires, Argentina. The Summit was attended by representatives of patient organizations, patients, caregivers, and leading physicians from 10 Latin American (LATAM) countries, all working in the area of COPD.

Exacerbation Presentations focused on progress of scientific research and advising patients in matters of treatment, rehabilitation and practical aspects of everyday life. Speakers included: Drs. Alejandra Rey (Uruguay), Gabriel García (Argentina), Maria Montes de Oca (Venezuela) and José Jardim (Brazil). Patients Raul Arbiza (Uruguay) and Carlos Cambon (Argentina) gave personal testimonies, and John Walsh, president of the COPD Foundation in the USA, spoke about the importance and benefits of global cooperation in the areas of communication, resource sharing and COPD research. Attendees had opportunities to break out in groups and exchange experiences and discuss suggestions for COPD awareness in their countries.

The following meeting objectives were addressed:

  • Specific COPD patient needs
  • Firsthand progress and the main avenues of research that are being developed
  • Creating awareness to require public and private policies for prevention, research and treatment
  • Benefits, organization and active participation of the patient community at the local, regional and global levels

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Tags: advocacy COPD Global Latin America
Categories: Related COPD News

COPD in Tennessee

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In a recent piece published by the Knoxville News Sentinel, COPD Suffocating Tennessee’s Health, Mike Leventhal, executive director of Tennessee’s Men’s Health Network and Stephanie Williams of the COPD Foundation, described the high prevalence rates of COPD in Tennessee. Nearly 9 percent of Tennesseans live with this progressive lung disease, causing the state to have the third highest rate nationwide. Of the 500,000 individuals in Tennessee living with COPD, most will not seek treatment or even realize they have the disease until they have lost more than half of their lung function.

Leventhal and Williams explained that many Tennesseans ignore the warning signs - breathlessness and coughing - as many associate those symptoms with aging. Medical professionals also experience challenges in identifying COPD in symptomatic individuals. They pointed out that treatments do exist to slow the decline in lung function and improve patients’ quality of life. Medication, pulmonary rehabilitation, and supplemental oxygen are just some of the ways individuals can prevent their symptoms from getting worse. While there is no cure for COPD, there were more than 40 new medications in development to treat the disease as recently as last summer.

The authors stressed the importance of getting screened for COPD early, and noted that the Men’s Health Network has partnered with the COPD Foundation in its outreach efforts, as men are less likely than women to visit a physician. They explained that the top three risk factors for developing the disease include smoking, environmental factors, and genetics. COPD most often occurs in people 40 years of age and older who have a history of smoking.

While not everyone who smokes will develop COPD, and not everyone with COPD is a smoker, many of the individuals diagnosed with the disease have smoked in their lifetime. Individuals who have had long-term contact with harmful pollutants in the workplace including certain chemicals, dust, or fumes can also develop COPD. Even if an individual has never smoked or been exposed to environmental toxins, they can still develop the disease through genetic factors.

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Tags: COPD prevalence screening symptoms Tennessee treatment
Categories: Related COPD News

Introducing the StopCOPD App!

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It is estimated that 30 million Americans have COPD - so why isn’t there more research around finding better treatments or a cure? As you probably know, COPD is a severely under-studied disease. Despite being the third leading cause of death, there are only 780 ongoing trials for COPD - which pales in comparison to the over 41,000 trials taking place in cancer research. The COPD Foundation is dedicated to changing this statistic. As a result, we have been tirelessly recruiting patients to the COPD Patient-Powered Research Network (COPD PPRN) to provide doctors and scientists with the information they need. Thousands of patients have already joined us by completing a simple survey at www.copdpprn.org www.copdpprn.org.

StopCOPD app Have an iPhone? Joining the network just got easier. The COPD Foundation has developed the StopCOPD app that is specifically designed to help medical researchers gather data more frequently and accurately from participants. World-class research institutions have already developed similar apps for studies on asthma, breast cancer, diabetes, and Parkinson’s disease. Now we can do the same to support COPD research for a cure! Click here to download the app .

Features of the StopCOPD app StopCOPD app include:

  • Informed consent: users are able to read the informed consent document which is displayed in a clear and easily maneuverable fashion
  • Surveys: participants are able to complete COPD PPRN surveys through the app as well as access additional educational information
  • Active tasks: participants are also able to share additional information about themselves by performing activities that generate data using iPhone’s advanced sensors. Initial tasks include motor activities, fitness, cognition and voice
  • Comparative data: future features of the app will allow participants to see how their personal data compares to others in an aggregate fashion

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Tags: health research solutions survey Technology trials
Categories: Related COPD News

World COPD Day is November 18!

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Tomorrow is World COPD Day! Over 300 million individuals live with COPD worldwide and we are joining with COPD advocates everywhere to honor the lives touched by this disease.

Get involved to promote awareness online!

Chat

  • Join U.S. News and World Report, the National Heart, Lung, and Blood Institute (NHLBI), the Centers for Disease Control and Prevention (CDC), and the COPD Foundation for the #Voices4COPD Twitter chat on November 18 at 2 p.m. EST.
  • Download the COPD Foundation's social media toolkit here and share infographics, messages, and your #MeAndCOPD story with your social networks.
  • Make Twitter #COUGH by joining the awareness Thunderclap. Sign up here.
  • Take the #DareToStair challenge. Show your support and generate awareness by taking the stairs - the more floors the better! After a couple of flights, you'll start to get a sense of what a person with COPD goes through every day. Post pictures using the hashtag #DareToStair on your social pages.

As always don't forget to connect with our social community at COPD360social!

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Tags: awareness COPD Month World COPD Day
Categories: Related COPD News

A COPD Story Comes Full Circle

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Joe Morrison has a unique COPD story that has come full circle. His father Chuck was diagnosed with COPD in 2006, prompting Morrison to become an advocate for greater awareness around the disease. His advocacy efforts for the COPD Foundation brought him to our Annual Awards & Recognition Benefit in December 2011 in New York City, where he met Dr. Forrest M. Bird, inventor of the first practical mass-produced medical respirator and “Babybird” respirator—a pediatric respirator that saved the life of one of Morrison’s children, Brendan.

“I don’t know if there are words to describe how I felt. I am grateful beyond anything I can even say. The fact that I almost lost my son and he survived, and survived without have any kind of after-affects, there are no words to describe that,” Morrison says. “I would rate being able to thank Dr. Bird in person one of the top 10 things in my life. That’s big—I’m married and have four kids, so those are my top five right there. I can’t really accurately describe how great it felt to go to the person responsible for such an amazing device that has saved so many children, including my own.”

Brendan was born June 19th, 2005, and because of complications during birth, had to be rushed to another hospital and was put on the Babybird respirator.

“How well it functioned was reason enough to not have to put him on a bypass machine, and otherwise, he would have been kept in the hospital much longer with a much harder road for recovery,” Morrison says. “Today, Brendan has no affects from the lack of oxygen [at birth].”

“I’ve been very lucky to have been able to meet a lot of amazing people in my life, but to shake his [Dr. Bird’s] hand and look into his eyes, you can just tell he is someone with an enormous heart and incredible intellect. Within five seconds it was apparent what kind of an amazing person he is.”

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Categories: Caregivers and Caregiving Personal Stories Related COPD News

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