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My First Memory of Advocacy

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Advocating for COPD research and policy

Tracie Sullivan, Advocacy Coordinator at the COPD Foundation manages the COPD State Advocacy Program, a grassroots initiative that encourages everyone in the COPD community – patients, caregivers, health care providers, and students – to come together to lobby on behalf of the 30 million Americans living with the disease. Tracie talks about her experiences in community organizing and shares how you can become a COPD State Advocacy Captain.

My first memory of advocacy was going to a rally with my father when I was ten. I remember sitting on his shoulders and watching a presidential candidate speak outside the town hall on a snowy evening in October, surrounded by hundreds of people cheering and holding signs.

As a grew up, I realized how unique my experience was living in New Hampshire and my exposure to politics at a young age through the primaries. With the largest amount of local elected officials in New Hampshire, combined with national presidential attention, it was not uncommon to bump into representatives at a local restaurant and have a conversation with them about an issue you cared about.

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Tags: COPD State Advocacy Captain grassroots advocacy
Categories: Advocacy

Medicare Coverage of COPD

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Medicare is a national health insurance program that covers people aged 65 and older and people with certain disabilities. It is a different program than Medicaid, which is a program that assists people with low incomes with the costs of healthcare.

Finding Medicare with COPD It is estimated that 1 in every 9 Medicare beneficiaries suffer from COPD. Health.com reported that it is was the fourth leading cause of death in the United States. While smoking is the leading cause of COPD, a small percentage of individuals develop the condition due to other air pollution.

Original Medicare has two parts which cover hospital benefits and outpatient medical benefits. There is also a voluntary drug program to help out with the costs of outpatient prescription medications. In general, most medical care which is medically necessary will be covered by Medicare. This includes lung disorders like Chronic Obstructive Pulmonary Disease (COPD), emphysema and asthma.

Let’s look at how the different parts of Medicare cover treatment of COPD:

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Tags: Medicare Medicare with COPD
Categories: Tips for Healthy Living

What is Smart Inhaler Technology?

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A recent survey conducted by the COPD Foundation observed adoption of mobile app technology and overall digital behaviors of patients. 291 individuals shared information about mobile use as well as their interest in smart inhaler technology. A smart inhaler integrates with your mobile phone using sensors and Bluetooth technology to track you daily usage and alerts you when you have missed a dosage. The mobile app may also provide insights into your health that may be shared with your doctor. The technology is believed to increase medication adherence which in turn decreases severe flare-ups and emergency hospitalizations.

Our survey found that:

  • 58% of respondents used mobile apps on a regular basis, however nearly 70% were unfamiliar with smart inhaler technology;
  • 66% would like a tool to help track medications;
  • 71% would like information on tips for living well with COPD included in a mobile app.

Smart Inhalers to treat COPD and track manage

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Tags: app COPD mobile Smart inhaler
Categories: Tips for Healthy Living

Taking the First Step

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Tracie Sullivan for COPD advocacy

Tracie Sullivan, Advocacy Coordinator at the COPD Foundation manages the COPD State Advocacy Program, a grassroots initiative that encourages everyone in the COPD community -- patients, caregivers, health care providers, and students -- to come together to lobby on behalf of the 30 million Americans living with the disease. Tracie talks about her experiences in community organizing and shares how you can become a COPD State Advocacy Captain.

I remember in my first advocacy job, my supervisor handing me a list of 50 state representatives, “Can you call all these elected officials today and ask them if they are going to vote for the Childcare Scholarship Bill and what their opinions are on this year’s state budget?” As I looked at the list, I could feel the sweat in my palms and my heart beat faster. I had never called an elected official before. I didn’t know what to expect- Would they be polite? Would they want to talk to me? What would they say?

I started by building a script. I wrote down an introductory sentence of what I was going to say and put a few bullet points of discussion topics I wanted to remember to talk about. As I dialed that first number and continued my calls throughout the day, I started to feel at ease. All 50 state representatives were polite and interested in hearing what I had to say about the topic at hand. We had great conversations, they asked questions, and it started my relationship with engaging with my elected officials.

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Tags: grassroots COPD state captain
Categories: Advocacy

Clinical Trials – What They Are, Why They’re Important and How You Can Participate

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Clinical Trials with COPD Research is critical to learning more about disease and potential treatments. While research is important, the different types of research can be confusing and even overwhelming. In the coming months, we will be writing a series of blogs to provide you with more information about research – if you have any questions or would like us to cover a specific topic, please post in the comments section at the end of this blog.

What are clinical trials?

Clinical trials are research studies that investigate the safety and effectiveness of a medical treatment, strategy or device. A clinical trial is often used to determine if a new medical treatment is more effective or has less dangerous side effects than the standard treatment used. The main types of clinical trials are interventional (testing the safety of a drug, device or new treatment) and observational (observing participants over time). Clinical trials also consist of different phases which first test the safety of a potential new treatment and then progress to larger scale research.

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Tags: clinical trials COPD patient recruitment
Categories: Education, Resources and Studies

Faces of COPD: Carol Rubin

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Carol Rubin is one of the newest members of the COPD Foundation’s State Advocacy Program. Learn more about life with COPD below.

Having grown up in the Bronx, New York, I was exposed to all the wonderful cultural entities that New York City has to offer. I’ve always loved the theater, museums, the NY Yankees. After I began my career with the NYC Department of Education as an educator, I moved to New Jersey, but very close to Manhattan to continue enjoying the life of a “Native New Yorker.”

Villages learn about COPD Throughout the years, I became involved in volunteer work, fundraising, and traveling. After retiring as a principal, I began a second career, part-time as an adjunct professor at a local college, going to different schools to supervise student teachers and doing consulting work. During my visits to student teachers, I went to some old school buildings that had 5 to 6 floors with no elevators. It was during these visits that I experienced shortness of breath going up the stairs. Then, I suffered shortness of breath from walking uphill and doing activities that required lifting, bending, reaching (changing bedding). At first, I justified that I was out of shape, should lose weight (as so many others with COPD rationalize).

As the shortness of breath became more frequent, I went to a cardiologist who had me take a stress test and echocardiogram. The results were good; my heart was fine. This went on for another year. Once again I went through a stress test and echocardiogram and once again, the results were good. I never connected my symptoms with respiratory problems or my history of smoking because although I was a smoker for many years, I had stopped smoking 20 years ago.

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Tags: Carol Rubin International Women's Day
Categories: Personal Stories

Faces of COPD: Jimmy Slover

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Jimmy Slover is one of the newest members of the COPD Foundation's State Advocacy Program. He has shared his experience and insights into living with COPD. Follow his story below.

On February 25, 2010 I my life turned upside down and it would never be the same again.

It was 3:00 in the morning I wanted a cigarette. I can still remember lighting it up and trying to smoke it as I coughed my head off. At that particular moment I did not care about the coughing nor the fact that I couldn’t breathe worth a darn – I just wanted that cigarette. Because I wasn’t able to be strong and tell my brain NO, the following took place and changed my life forever.

I lived in an apartment complex at my brother’s house which had a unit upstairs and two single bedroom units downstairs. Thank god I lived in one of the bottom units. I can remember smoking that last cigarette and coughing and coughing and then it happened: I began hyperventilating. I remember calling my neighbor and screaming for him to come down and help me. I then dialed 911 and that was the last thing I remembered.

The following day, I contacted my family and told them they had better come say their “goodbyes” because I didn’t I was going to make it another day. Coincidentally, the day before this major event in my life happened: I saw my first pulmonologist. He looked me straight in the face and told me that it was going to take something drastic for me to quit smoking. I still can’t get over the fact this lung doctor just knew I was headed for disaster after just one office visit.

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Tags: COPD State Advocacy Captain Jimmy Slover
Categories: Personal Stories

A Trip to the Villages

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This blog post was written by Tracie Sullivan, Grassroots Advocacy Manager at the COPD Foundation

Villages learn about COPD Last weekend I had the wonderful opportunity of traveling to The Villages in Florida with my COPD Foundation colleague, Jamie Sullivan, and a group of enthusiastic and passionate researchers, physicians, and nurses from the University of Illinois Chicago and the University of Washington.

Right when we arrived we got to work, with meetings with the Villages Regional Health Center, the local hospital, and were able to meet with staff at Buffalo Crossing, a local assisted living facility. We were joined by doctors Jerry Krishnan and David Au. We learned from staff more about the wonderful support group, Airheads, the educational programming for COPD, and some of the challenges COPD patients are facing. In the evening, we were able to meet with Airheads Support Leader, Stephen Rule for a homestyle barbeque dinner, to learn from Stephen more about the local work he is doing in the community.

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Tags: COPD education The Villages
Categories: Advocacy

Generic Drugs: What You Should Know

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Generic drugs for COPD Eighty-nine percent of prescriptions distributed in the United States are for generic drugs as they cost 80-85 percent less than the originator brand-name products. You may ask: why does such a difference in price exist if generic drugs contain the same active ingredient to their brand-name counterparts? New drugs are protected by patents and can only be sold for a period of time by the company that made them. When these patents expire, other companies are then allowed to seek approval from the U.S. Food and Drug Administration (FDA) to develop and sell a generic version. The competitors do not have to perform the initial clinical trials, making generic drugs cheaper to produce.

The COPD Foundation has teamed up with the CHEST Foundation to dispel common myths around generic drugs.

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Tags: COPD Generic drugs
Categories: Tips for Healthy Living

Honeymoon Walk for Charity – A Million Steps with Love

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Has a movie ever motivated you to take a bold move in your own personal life? Nan O’Brien and David Webb are inspired to make a difference in the lives of others just as they are beginning to start their lives together. Nan and David are set to wed in the Canary Islands on Sunday, February 25, 2018 and will spend their honeymoon walking to raise funds for five worthy charities. The couple is preparing to walk 515 miles along the northern coast of Spain for their Honeymoon Walk for Charity.

Honeymoon Walk for Charity COPD

They were inspired to start their philanthropic journey after watching the movie ‘The Way’. The film, starring Martin Sheen and written and directed by his son Emilio Estevez, tells the story of a man who decides to walk The Camino de Santiago, also known as The Way of Saint James, in honor of his late son who was not able to complete the journey. The couple chose five charities that hold personal meaning and connection to them. They both have loved ones who live with chronic obstructive pulmonary disease, and are therefore aware of the issues and challenges patients and caregivers undertake. With this realization in the forefront of their minds, they approached the COPD Foundation with the idea of being one of their five charities and we very graciously accepted.

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Tags: COPD Honeymoon Walk for Charity Nan O'Brien
Categories: Personal Stories

Hugh Traulsen on Manifesting Your Future

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Hugh Traulsen and COPD “Every day is a new life to a wise man.” Hugh Traulsen of Virginia uses these words as a guiding principle. Nearly a decade ago, Hugh experienced a lung attack was told by a pulmonologist he only had six months to live. The shocking news made him re-evaluate his purpose and mission in life.

“When I was diagnosed I saw it as a blessing because I was forced to leave the workforce and I had to decide what I was going to do with my life,” says Hugh. From that moment on, Hugh committed himself to sharing his message of positivity and, “…changing the world from my dining room table.” So how does he achieve his goal? Hugh’s says he does so by encouraging individuals to find and share their own personal gifts.

“I am a senior citizen, I’m disabled, I’m in the veteran’s healthcare system, I’m pretty much homebound, but that does not limit me as long as I have a telephone. I don’t even own a computer. It’s again, not about me, but about me empowering you, to help you to find your own strengths and to bring them forth and in a way that will bless others.”

When asked about the personal tools he has used to manage COPD, Hugh told us that the first step was dropping fear. “People are afraid of stepping into the unknown, but that is where the breakthroughs happen. That’s where, when you let go and let God, the miracles happen.” He went on to explain that what one fears, one will attract, so it is important for everyone to focus on what they want to manifest in their lives.

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Tags: COPD Hugh Traulsen Law of Attraction
Categories: Personal Stories

How Are CT Scans Used in Detecting COPD?

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CT scans detect COPD To diagnose an individual with COPD, a potential patient must undergo a simple breathing test called spirometry. However, in some cases, one’s healthcare provider will perform medical imaging, a form of testing that result in a visual depiction of the patient’s lungs. In such cases, an imaging test, such as chest x-ray, CT scan, or an ECG may be used to identify other potential causes of COPD symptoms and confirm one’s diagnosis.

Computerized tomography scan, or CT scan, is a form of imaging that takes detailed pictures of the lungs. Though similar in function to an X-ray, a CT scan can take a number of smaller pictures whereas an X-ray can only take larger photos. Consequently, the CT scan is the most sensitive and accurate option in detecting and measuring emphysema. A CT scan can pick up characteristics that a normal X-ray can miss like specific damage to the lungs directly caused by emphysema, small lung nodules, or even small lung cancers. Additionally, a high resolution CT scan is also excellent at detecting and determining the severity of bronchiectasis. another lung disease that falls under the scope of COPD. In bronchiectasis, the lung’s bronchial tubes are damaged and expanded. Thickening of the bronchial walls can also be seen with the CT scan. This helps determine how much chronic bronchitis is present in the lungs.

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Tags: CT scans Identifying COPD
Categories: Education, Resources and Studies

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