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Respiratory Resource Center

Standing Up for the Needs and Interests of People with COPD: The Vital Work of COPD Advocates

Mar 9, 2020 9:13:00 AM / by Devon Slavens

Standing Up for the Needs and Interests of People with COPD: The Vital Work of COPD Advocates

Despite the fact that COPD is the fourth leading cause of death in America, it is, unfortunately, a condition that the average person knows next to nothing about. Many people have never even heard of COPD, let alone how it's caused or how common, serious, and deadly it can be.

 

Among the uninformed are thousands of at-risk people who will develop the disease later in life, people who don't have the knowledge to recognize the symptoms or get treatment when they appear. In fact, many people who are diagnosed with COPD never even knew the disease existed before their doctors gave them the news.

 

These are tragic situations that often lead to delayed diagnosis, misdiagnosis, and missed opportunities to slow the disease progression while it's still in the early stages. However, it doesn't have to be this way; there are many ways to raise public education and awareness so fewer people are blindsided and left vulnerable to the disease.

 

This is one of the primary goals of COPD advocates, who work hard to make the disease better-known in the media and in public discourse in general. However, COPD advocates do much more than just bring attention to the cause; they play a valuable role in supporting COPD research, political activism, and providing tangible support services to patients and families of patients with COPD.

 

In this post, we're going to talk more about what COPD advocacy looks like and what it means both for public health and for people with COPD. We'll introduce you to some of the biggest players in the COPD nonprofit and advocacy community, take a look at their most valuable contributions, and discuss a variety of different ways that you can get involved.

 

We believe that every person should have the knowledge they need to keep their lungs healthy, and that every person with COPD should have access to accurate information, adequate health care, and a compassionate network of support. In order to bring this vision to reality, it requires the effort of hundreds of volunteers, career advocates, and people like you working together to bring positive change at the local level and on the national stage.

 

Why COPD Advocacy Matters

 

 

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Unlike more high-profile health conditions (e.g. cancer or heart disease), COPD isn't something you hear about often in the news or casual conversation. As a result, most people don't know much of anything about COPD unless they've encountered it in their personal life, which usually doesn't happen until they, or a loved one, is diagnosed with the disease.

 

This relegates millions of people who are living with COPD—including more than 16 million Americans who have the disease—to obscurity. That is a massive number of people that equates to six percent of the US population and continues to grow every year, albeit slower now than the rapid 50% increase it saw over the past two decades.

COPD is too important an issue to leave on the outskirts of public discourse, and lack of public awareness has consequences not only for those with COPD, but also for public health in general. Let's take a look at some of the main reasons why we need COPD advocates to raise awareness and work for the interests of people affected by the disease.

 

Lack of Funding Limits COPD Services & Stunts Research

 

 

 

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COPD is an underfunded disease in both the private and public sectors, in part due to lack of public attention and concern. Hospitals and treatment centers just don't have enough funds to put toward educational resources, support services, and affordable treatment options for people with COPD.

 

As a result, many people with COPD—and their families—struggle because they don't have access to adequate information, treatment and other forms of healthcare support. Advocates help by bringing volunteers, donors, and public resources to their aid, and promoting more and better facilities to accommodate the large number of people who have the disease.

 

Public awareness can also have an effect on medical research, since researchers often find it easier to secure funding for topics that have public appeal. On the other hand, it can be more difficult to get financial and academic support for studies on diseases like COPD which are less likely to show up on the public's radar.

 

Lack of Representation Excludes People with COPD from Public Discourse

 

 

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Another problem with lack of public awareness is that people with COPD tend to be left out of important conversations regarding public health policies and priorities that affect them. This includes discussions about health insurance coverage, medicare reform, disability accommodations, and more.

 

After all, it's no surprise that those with the authority to allocate funds and resources are hesitant to prioritize the needs of people with a disease that is, from a public awareness standpoint, relatively obscure. As a result, there is a lack of public resources, support, information to help people struggling with COPD and the devastating hardships it causes.

 

Lack of Public Health Knowledge Puts More People at Risk for COPD

 

 

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Many people who will develop COPD later in life don't yet know that they are at risk for the disease. This is why public education is so important; it can show people how to recognize early COPD symptoms and risk factors, allowing them to get earlier and more accurate diagnoses.

 

Public awareness also plays a huge role in COPD prevention, since people are much more likely to take precautions to avoid a disease that they recognize and understand. The more people know about COPD, the more likely they are to make healthier choices that, overall, could significantly reduce the prevalence of this highly avoidable disease.

 

This is why COPD advocacy is so important; capturing people's attention is a necessary step toward getting COPD and COPD-related issues on the public's agenda. Public awareness is also key for COPD prevention and diagnosis, especially since it is a notoriously under-diagnosed and misdiagnosed disease.

 

So, in summary, here are some of the main reasons why COPD advocacy matters:

  • It helps raise funds for a variety of COPD causes, including research, education, and treatment services.
  • It gives people with COPD access to direct support from activists and organizations that offer understanding and compassion along with a variety of practical services.
  • It helps connect people with COPD (and their families) to resources and programs that can help them, including treatment centers, healthcare assistance, informational materials, support groups, financial aid, and more.
  • It helps to dispel common misunderstandings and misconceptions about COPD and about people who have the disease.
  • It promotes public support and understanding for people with COPD, helping them feel less isolated and invisible.
  • It can help people better recognize COPD symptoms so they can get earlier and more accurate diagnoses.
  • It can help the general public better understand how to prevent COPD, thereby reducng the number of people who develop the disease later in life.

 

Who Advocates for COPD, and What Do They Actually Do?

 

 

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Like most grassroots initiatives, the cause of COPD advocacy is led by a collection of loosely-associated non-profit organizations, volunteers, and activist groups. As we've touched on already, these advocates are devoted to advancing a variety of different objectives aimed at improving the lives of COPD patients and reducing the prevalence of the disease.

 

These include wide-reaching goals like improving public health education, furthering COPD research and prevention efforts, and increasing patients' access to much-needed treatments and support services. Many COPD and lung-health activists also turn their efforts toward clean air initiatives, working to shape public policy and promote community efforts to curb air pollution, tobacco smoking, and other public hazards that contribute to COPD.

 

In service toward these efforts, activists work in many different places and circumstances. Some work behind the scenes in planning, outreach, coordination, and administrative roles; others work out on the field, directly interacting with COPD patients and their families, as well as doctors, researchers, health authorities, policy-makers, and more.

 

 

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Specific activities and campaigns vary among activist groups, and range from designing public media campaigns to running call centers that provide advice and direction to people with COPD and other lung diseases. Others include lobbying legislators and policymakers in the name of COPD-related interests, or raising funds to donate to research and practical services for people with COPD.

 

For all these reasons and more, COPD advocates' play an important role in advancing the interests of COPD patients and improving public health. Next, lets take a closer look at some of the leading COPD advocacy groups to learn more about what they do and what kinds of services they offer for people with COPD.

 

 

The Global Initiative for Chronic Obstructive Lung Disease (GOLD)

 

 

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Screenshot from GOLD's website, https://goldcopd.org/.

 

 

The Global Initiative for Chronic Obstructive Lung Disease, or GOLD for short, is an organization that has been advocating for people with COPD for more than twenty years. It was established in 1997 in collaboration with other well-respected health organizations, including the National Heart, Lung, and Blood Institute and US National Institutes of Health.

 

The organization's main work revolves around COPD prevention and treatment, particularly the research and development of better standards for COPD diagnosis and better strategies for managing the disease at different stages. Toward this end, GOLD has published numerous evidence-based guidelines—developed by committees made up of leading science experts—outlining the “best” ways to diagnose and and treat COPD in clinical practice.

 

The most important of these contributions is GOLD's Global Strategy for Prevention, Diagnosis, and Management of COPD. This freely-available document, of which GOLD releases an updated version every year, includes up-to-date research and detailed clinical guidelines for COPD treatment that are used by doctors and healthcare professionals all across the world.

 

Another major initiative spearheaded by GOLD is World COPD Day, which was created as a means to spread awareness about COPD and the resources that are available to help patients and healthcare workers alike. GOLD uses this day as an opportunity to disseminate helpful educational materials and host public events catering to anyone who wants to learn more about getting involved in the effort to “reduce the burden of COPD.”

 

The COPD Foundation

 
 

 

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Screenshot from the COPD Foundation's website, www.copdfoundation.org.

 

 

The COPD Foundation is a nonprofit organization that works to better the lives of people with COPD through initiatives that further COPD research, education, awareness, and expanded services for people with COPD. It does this primarily by providing a variety of educational resources for COPD patients and caregivers on their website, and by establishing programs that directly serve people who are affected by COPD.

 

According to their website, the organization is dedicated to the following main missions:

  • Working for better and more affordable COPD treatments
  • Supporting initiatives for expanded COPD services
  • Improving the lives of people with COPD through research, education, and awareness
  • Supporting initiatives to prevent COPD and slow the progression of the disease

 

One of the major services offered by the COPD foundation a large online social network called COPD360Social. This community is provides supportive environment for patients, families, and caregivers to connect and share stories, information, advice, and encourage one another online.

 

Another service offered by the COPD foundation is a mobile application called the COPD Pocket Consultant Guide, which contains a variety of helpful tools for both COPD patients and healthcare providers. It includes educational materials like instructional videos for using inhalers and interactive features like an exercise tracker, medication calendar, and a COPD action plan manager to help you keep track of important aspects of COPD management.

 

The COPD foundation is also involved in political activism, particularly in promoting public policies that support the following objectives: more affordable COPD healthcare, better access to routine COPD care, better regulation of medical devices and medication, and improved public health in the form of better education, tobacco control, and clean air initiatives.

 

The nonprofit foundation also publishes original research in its own scientific journal titled Chronic Obstructive Pulmonary Disease: Journal of the COPD Foundation. Additional services they offer include professional development resources for healthcare workers, an educational video series for patients, and a large repository of educational guides full of practical information and advice for COPD patients and caregivers.

 

How to Get Involved

 

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The COPD foundation runs a sophisticated network of volunteers that are divided into groups that focus on specific areas of COPD advocacy. They include community leaders (State Captains), public ambassadors (Community Connectors), political advocates (Policy Champions), fundraisers (Resource Champions), and more.

 

If you'd like to volunteer to help the COPD foundation, you can sign up online through their website. If you think you have what it takes to take on a more involved leadership role, you can also apply to be a State Captain to coordinate volunteers groups and activities in your community.

 

You can also visit the COPD Foundation's COPD Action Center, which makes it simple to get involved in current political initiatives related to COPD and makes contacting your representatives a breeze. The action center's “Find Politicians” service find your finds your representatives' contact information for you, and their action alerts include sample scripts you can follow when writing your email or making a call.

 

The American Lung Association

 

 

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Screenshot from the American Lung Association's website, www.lung.org

 

 

Founded in 1904, The American lung association is one of the longest-lived nonprofit organizations advocating for people lung diseases like COPD. Their main objective is to promote “healthy lungs and healthy air” through public education, research, and political activism.

 

The American Lung Association works with a variety of different groups, including scientists, healthcare professionals, policy experts, and local activists to advocate for cleaner air, tobacco control, increased public awareness about lung health issues, and more extensive support for people affected by lung diseases. They enact this work on both the local and national level through a wide network of associations spread all across the US.

 

These groups provide community awareness and education and organize in-person support groups for people with COPD and other lung diseases. They also do a good deal of local activism, working to support policies and initiatives addressing the issues and priorities that matter the most to their respective communities.

 

In Colorado, for example, the American Lung Association coordinates two Clean Cities Coalitions dedicated to reducing air pollution—and particularly automobile emissions—throughout the state. These coalitions drive meaningful projects like the Driving Change program, which helps large employers switch from fossil-fuel powered vehicles to less-polluting electric and hybrid versions

 

The American Lung Association also furthers COPD and lung disease research by conducting original studies and providing grants and financial awards to outside research groups. They also run an Epidemiology and Statistics Unit, which monitors and reports on important lung disease trends, including morbidity and mortality in COPD.

 

How to Get Involved

 

 

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If you're interested in working as an advocate for the American Lung Association, you can sign up to volunteer on their website. You can also find out about local initiatives they're running in your state by visiting their “In Your Community” page.

 

Volunteer opportunities include things like staffing special events, conducting local community advocacy, and coordinating support groups for people with COPD (Better Breathers Clubs). If you have the right skills, you can also volunteer to serve on one of their expert advisory committees or teach a class for their Open Airways for Schools or Tobacco Education programs.

 

You can also join the American Lung Association's Lung Action Network, an email notification system that alerts you when there is an opportunity to contact your elected representatives about important policy issues related to COPD and other lung diseases. They also provide a repository of “tweetable facts” and recommended hashtags that you can use to raise COPD awareness within your own social network.

 

If you or a loved one has had a personal experience with COPD, you can also help the American Lung Association by sharing your story through their online submission form. This allows the organization to share your story with others via their newsletters and social media posts as a way to improve public awareness and spread hope within the lung disease community.

 

Other COPD Advocacy Groups and Resources

 

 

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You don't have to be part of a large or established national organization in order to be an advocate for COPD. The major national organizations we've outlined above make up only a small part of the large network of activists and advocacy groups that work toward COPD-related causes.

 

To learn more about some of these other organizations you can check out the list below, or you can find a more comprehensive list from the COPD Foundation here.

 

Here are some additional groups and organizations that advocate for people with COPD:

 

Additionally, there are many small, locally-focused advocacy groups operating out of hospitals, homes, and nonprofit offices all across the US. But even if you don't have an organized group in your area to work with, there are still other ways to help out your COPD local community (which we'll discuss more in the following sections).

 

How to Get Involved with COPD Advocacy

 

All the COPD organizations and initiatives and organizations we've mentioned wouldn't exist without the hard work and dedication of their staff and volunteers. It takes real people and real voices to keep the cause alive, and the more helping hands they are, the better.

 

Luckily, it's easy to join the cause for COPD advocacy, whether you're interested in volunteering your time, supporting a specific organization, or simply lending your voice to the cause. If you're ready to get started, continue reading to learn more about some easy ways to get involved.

 

Volunteer for a Nonprofit Group

 

 

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Many nonprofits are constantly in need of volunteers to help with various campaigns and activities. Volunteer duties can range from things like collecting donations and staffing events to lobbying citizens and legislators for clean air reform.

 

Getting involved is usually pretty simple; most COPD organizations have information for prospective volunteers right on their website, making it easy to see what kind of help they need. Some even have online forms you can fill out to request more information or apply to be a volunteer.

 

Donate to a Worthwhile Cause

 

 

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Many nonprofit and research organizations are funded in part through charitable donations. These donations help pay for all kinds of necessary costs, including staff, supplies, education campaigns, policy initiatives, research, patient services, and funding for any other activities they do.

 

Before you contribute, however, make sure you do some basic research on the group who will receive your donation to make sure your money is going to a trustworthy cause. Beware of misleading or fraudulent organizations that ask for money under the guise of a legitimate nonprofit or research organization.

 

Help Spread the Word

 

 

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While volunteering and giving financial contributions are great, you can be a COPD advocate without having to dig into your wallet or your free time. Instead, you can help out simply by spreading the word about COPD and worthwhile COPD causes.

 

One way to do this is by supporting COPD advocacy organizations and lung health groups on social media. Simply interacting with their posts and profiles through follows, likes, and comments can help extend their influence and reach.

 

You can also help spread the word by authoring your own posts or simply sharing content posted by other COPD advocates on social media. Amplifying these messages can go a long way toward helping important ideas and initiatives gain traction online.

 

You can also help spread the word about lung health and COPD-related issues within your own community and personal social groups. You could even go a step further by lobbying your local government and state representatives to enact policies that promote better lung health and support people with COPD; these include policies that support medical research, clean air, and improved healthcare access for people with chronic diseases.

 

A Final Note: Beware of Predatory Organizations

 

 

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Although there are many genuine COPD advocates and organizations out there working hard for the greater good, it's important to be on the lookout for scams and other bad actors that disguise themselves as legitimate advocacy groups. In particular, you should beware of organizations that aggressively solicit donations or promote unverified treatments like stem cell therapy for people with COPD.

 

One example of this is the Lung Institute (also known as the Lung Health Institute), an organization accused of zealously and unethically promoting for-profit COPD stem cell clinics. These clinics provide expensive, potentially risky, and so-far unproven (PDF link) stem cell treatments that have led doctors and former patients to denounce their activities; they are also the subject of a lawsuit against the Lung Institute for making exaggerated and misleading claims about the benefits of the stem cell treatment.

 

 

On the other hand, legitimate advocacy organizations don't engage in these sorts of predatory practices, and even caution against unproven treatments. Both the American Lung Association and the COPD foundation, for example, have dedicated pages on their websites describing their position on stem cell therapy and their reasons for advising patients against it.

 

Likewise, the Global Initiative for Chronic Obstructive Lung Disease (GOLD) currently has a dedicated banner at the top of their website just to warn their users about scams. They tell visitors to beware of “fraudulent sites seeking donations for COPD research” that mimic the colors and designs used on the GOLD's website, presumably to deceive or mislead potential donors into believing that they are associated with GOLD.

 

To avoid contributing to scams and unethical actors like these, you should always evaluate the credibility of an advocacy organization before you donate or use their services, even if they claim to be a benevolent nonprofit group. Look for trustworthy, transparent organizations that have good reputations and credentials, and be skeptical of those that make dubious claims or don't have a track record you can check..

 

Conclusion

 

Even though COPD has been a leading cause of death in the US for at least half a century (PDF link), there is still a long way to go before this deadly disease gets the attention it deserves. That's why COPD activists and advocacy organizations have so many important roles to play in the wide-reaching movement to acknowledge, prevent, and treat COPD.

 

This work helps real people and helps bring vital resources not only to those living with COPD, but to everyone who is—or might be affected—by chronic respiratory conditions. It shows people with COPD that they matter, that they deserve to be considered, and that they don't have to resign themselves to sitting on the outskirts of public life.

 

If you are interested in being a COPD advocate, don't hesitate to get in touch with any of the many COPD advocacy groups and organizations. They need all the help they can get for all the important work they do, from launching educational campaigns and fighting for better health services, to providing practical resources and support for individuals and families affected by the disease.

 

After all, it's hard enough to cope with a chronic disease without the pressure of isolation or the persistent struggle to get the information, support, and treatment resources you need. Fortunately, COPD advocates are forging a path to a future where people with COPD will no longer have to feel undervalued, underrepresented, or misunderstood.

Topics: COPD, Respiratory Resource Center, oxygen therapy

Devon Slavens

Written by Devon Slavens

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