Novemberis COPD Awareness Month!

Novemberis COPD Awareness Month!

November is national Chronic Obstructive Pulmonary Disease (COPD) Awareness Month. COPD is a term used to describe progressive lung disease that includes emphysema, chronic bronchitis, and non-reversible asthma.

Facts about COPD

  • COPD is the third leading cause of death in the United States.1
  • More than 16 million people in the U.S. have been diagnosed with COPD.1
  • 700,000 hospitalizations and 1.5 million emergency department visits are due to COPD-related exacerbations annually.2
  • Roughly 25% of COPD patients have never smoked.1
  • Exposure to lung irritants, such as dust and chemicals in the workplace or other fumes, exposure to secondhand smoke, or air pollutants may contribute to COPD.3


Illinois COPD facts provided by the COPD Foundation.

Perspectives on COPD

We wanted to hear from our colleagues and patient partners why COPD care, research, and advocacy are important to them.  Keep reading to be wowed!

Perspective on Patient Advocacy from a Person with COPD

Jan Cotton is a patient research advocate and consultant for the Breathe Chicago Center©. She has had COPD since 2000, and is passionate about patient advocacy.

Why is raising awareness about COPD important to you?

Too many people are suffering and dying from this debilitating disease because there is not enough awareness about it. I would like for every person affected by this disease to learn as much as possible about how to live with it and maintain it to the best of their ability.

What advice do you have for people at risk for COPD?

I would advise anyone at risk for COPD to get tested by a pulmonologist (lung doctor) to see if their lungs have been compromised. If they are smokers, please try to quit or get into a program for smoking cessation. Also check your family history to find out if the genetic form of COPD, alpha 1 is prevalent in their family.

How can the clinical community help more people to recognize the signs and symptoms of COPD?

Make sure there is plenty of literature in their establishments that address the signs and symptoms of COPD, schedule lectures or seminars that can be attended by the community. The clinical community needs to listen to their patients concerns.

How do you stay motivated to keep up your advocacy efforts and stay involved?

It takes a firm mind set with likeminded people. You must have a great relationship with all your medical professionals, exercise, eat properly. I believe meditation and belief in a higher power is a must. You must tell yourself daily that you have a purpose, and that your purpose is to keep moving and stay connected. One cannot afford to give up or give in.

How should people with COPD and their caregivers get involved in advocacy efforts for COPD in their community?

I would hope that COPDers and caregivers have at least heard about the COPD Foundation 360 Social. This is an online community of COPDers, caregivers, respiratory therapists, and COPD administrators. Any concerns are addressed here. One must have the drive that it takes to want to advocate. If you are sick and tired of watching people’s lives along with your own waste away, then advocacy is for you. Advocacy works can begin with reading everything you can about the disease. Talk to your healthcare professional. Share your stories. Have group meeting and health fairs. It takes the voices of all affected by COPD to be heard. We want to be heard from the White House to City Hall. We need action and an action plan.

Health Care Provider Perspective

Jerry Krishnan, MD, PhD is a Professor of Medicine and Public Health, Director of the Breathe Chicago Center©, and Associate Vice Chancellor for Population Health Sciences Program in the Office of the Vice Chancellor for Health Affairs at the University of Illinois Hospital & Health Sciences System. He is passionate about developing, testing, and implementing healthcare interventions to improve care and outcomes for people with COPD.

Why is seeing a healthcare provider important for someone with COPD?

COPD can be a debilitating and scary condition. Your doctor or nurse can help not only evaluate your condition and get you on the right treatment regimen to help you breathe easier but can also connect you with trusted informational resources. COPD can cause changes in your lungs over time, so regular follow-up is important to be sure you are still on the right treatment regimen.

What questions should people with COPD ask their healthcare provider?

People with COPD usually take several medicines. It is important to know the difference between medicines made for sudden symptoms or flare-ups (often called “rescue” inhalers) and those that work long-term to control symptoms.

It is also important for people to ask if they qualify for Pulmonary Rehabilitation, an education and activity based program that helps people strengthen their lungs.

If someone uses supplemental oxygen for COPD, it is important to ask how often they should be re-checked to be sure they are taking the right dose, and have the right equipment. There are lots of types of oxygen equipment, if the equipment is not working for someone’s lifestyle, they should ask what other types are out there!

And lastly, if someone has been in the hospital for their COPD, they should ask what other types of medicines may be right for them to help prevent flare-ups and future hospitalizations.

Perspective on Research from a Person with COPD

John Linnell is a patient research advocate and consultant for the Breathe Chicago Center©. He has had COPD since 2005, and is passionate about what he describes as being an “involved patient”.

What topics should be highlighted in future COPD research?

Future COPD research should concentrate on how patients can be treated based on their specific COPD, meaning both the underlying cause as well as the phenotype. COPD is no longer simply COPD and the lung biome has much need for further research and explanation. Another very important area of research that we have only begun to scratch the surface of is “tech”. No longer is digital tech a dream…the future has arrived and researchers are embracing it at a furious pace. Imagine a “wearable” that can actually predict, with accuracy, an exacerbation before the symptoms are noticeable to the patient!! Imagine a wearable sensor that communicates with a portable oxygen concentrator to increase/decrease the liter flow automatically based on blood oxygen readings!! Research today is more than just at the molecular level. Research today needs to and will address Quality of Life. A cure is still in the distant future, and I may die WITH COPD but I do NOT have to die FROM COPD.

What is your motivation for participating in COPD research?

I am motivated to be involved in COPD research because it’s mine. I have COPD and I chose to “own it”, to understand it, to learn how to best live with it. I am motivated because at it’s very core, COPD research is all about ME. So, I owe it to myself to be involved. There is a saying I often use that I attribute to the late John Walsh, founder of the COPD Foundation: “If it’s without us, it’s not about us!” The main ingredient in COPD research is the patient and all good recipes need key ingredients…which means ME!

Do you think it is important for people to participate in research? Why?

I feel it is important for many people to participate in research. As I interact with other COPDers on social media and in forums, I am always encouraging them to become involved. Some feel lost, lonely, or scared. For many, being involved can provide a sense of purpose. It is a wonderful feeling for a patient to feel appreciated, needed, and to be contributing to something that helps not only themselves but the millions of other COPDers. It is also important to get involved as COPD is the 3rd leading cause of death and close to 155th in funding. So, even if it is simply writing or calling your elected officials to support further funding, that IS helping with research.

How should researchers include people with COPD in research?

There are many ways that those with COPD can be involved in research. The obvious would be to participate in a clinical trial. There are, however, other ways of being included such as:
– Review and critique Informed Consent Forms so they are understandable to the lay participant
– Edit and help revise Lay Language Summaries once studies are completed so it is written to be easily understood while at the same time not appearing to talk down to the reader
– Be a Patient Co-investigator. Researchers often need the “patient perspective” as protocols are designed, weekly calls are held, appropriate benchmarks are determined, and overall study design as to how it affects the patient.
– Be on an institution or pharma/industry company Patient Advisory Panel.
I have done all of the above and found it to be very rewarding experiences.

How should people with COPD or caregivers for people with COPD get involved in their research community?

To become involved in their research community. I would suggest by starting with the COPD Foundation. They have wonderful resources and patients enjoy the cameraderie of interacting with other COPDers on the Foundation’s COPD360Social social media platform. Sometimes, one has to go look to find what one seeks. For myself, my work over the years with the COPD Foundation led to connections that blossomed into what almost seems like a full job. For fun, I googled ‘Patient Advisory Boards’ and 172,000,000 (yes 172 Million) hits came up in .52 seconds. So, based on that alone, I would think that those truly want to be involved certainly can!!
It is more than just a feeling of contribution…it is rewarding and often fun.
Life is Like a Bowl of Ice Cream…Enjoy It Before It Melts!!

Interested in getting involved?

ClinicalTrials.gov is database of privately and publicly funded clinical studies conducted around the world. By clicking here, you will be taken to the ClinicalTrials.gov page that has already been filtered for COPD studies that are currently recruiting for participants.

For information about COPD studies at the Breathe Chicago Center©, call us at 1-855-I-WHEEZE (1-855-494-3393) or email us at breathe@uic.edu.


References:
1. American Thoracic Society, 2017 2. Willard, Chronic Obstructive Pulmonary Disease, 2016 3. National Heart, Lung, and Blood Institute, 2018