Voices Across America

COPD and how it led me to Advocacy


State: Wisconsin
Congressional District: WI03


Lung Disease

Issues and Challenges

John has encountered: Copay Issues, Surprise Billing

My Story

My name is John and I have Stage 4 COPD. Currently, I am 64 years of age. I was diagnosed with COPD in the Fall of 2005. I am guessing my story is not all that different from many of you or your loved ones. For the sake of context, I will mention now that I was a smoker.

I had always been quite active, not athletic, but very active in my life and my career. My career was as a District Manager in retail, which entailed traveling throughout the Western United States calling on my stores and helping develop new territories. I made the switch to marketing just before the turn of the century. (Wow! I just really dated myself!!). I was in charge of direct marketing at numerous events such as concerts and concert tours, professional sports events, the PGA Tour, home shows, and art festivals. This also involved setting up the locations and tearing down afterwards.

In the Fall of 2005, I had a routine well-check visit with my primary physician. During the exam, I remarked to him, “Ya know, Doc, it really sucks getting old!”. He chuckled a little but then asked why I would make such a remark at 49 years old. I described to him how I had, over the past year (possibly longer and just not realizing it) that it was taking me longer and longer to get ready for the day. It took me a few hours to just get out the door. No longer could I leap out bed, quickly shower and dress and be out the door with my obligatory cup of coffee. I also became winded, fatigued, tired, exhausted much earlier in the day. I truly thought it was because I was just getting older. Of course, my smoking surely couldn’t be part of the cause.

He decided to take a quick X-ray right then. He knew of my smoking history, glanced at the X-ray, and told me that he wanted to refer me to a pulmonary doctor because he suspected I had COPD. He explained that a pulmonologist can perform other tests and is specialized in both diagnosing and treating COPD. An X-ray can point towards COPD, but spirometry and a CT scan and far more definitive.

Living, at the time, in the Phoenix metro area, there were many pulmonary clinics and I was able to be seen by the referred doctor within a couple of weeks. (Looking back, I now realize how fortunate I was to receive a diagnosis within a few weeks of mentioning my symptoms.)

I went to the appointment, probably more concerned about the higher specialist co-pay than what I might find out! Well, simple spirometry told him all he needed to know at that moment and he informed me that I had moderate COPD. He wanted to order a CT scan, an EKG, and a heart echocardiogram in order to establish my baseline. I was prescribed an inhaler, told to quit smoking, and sent on my way. Poof! There I was diagnosed with COPD and given a reason I was feeling the way I was. On my second visit, an EKG was conducted at his office. He didn’t remark about anything on it. When I looked at it before leaving, it mentioned Right Branch Bundle Block - irregularity! Oh my goodness, in my mind I had a heart problem as well and no one seemed to care. I tried to find my doctor or someone, anyone, to explain this. Another physician looked at it and calmly told me that it is quite common and not that remarkable and that in my case it didn’t require anything. I realized then that clinicians sometimes don’t realize that they use words and phrases that the lay person doesn’t understand.

I am not sure what I would call that stage of my life. I wasn’t in denial; I knew I had COPD. For myself, though, nothing really changed. I continued to smoke. Hey, now I had an inhaler!! Looking back, it just didn’t dawn on me that a diagnosis of COPD was actually life changing. It was a completely new chapter in the story of my life, yet one I just didn’t take to heart. I had not yet had my “aha moment”. More on that later.

I kept my appointments with the pulmonary doctor and was again reminded to quit smoking. No resources were provided, no tips and tricks, no advice, just told to quit. Within about 6 months I was now on two different maintenance inhalers. Trust me, I am not blaming the doctor that I kept smoking. He could, however, have provided more avenues of support. He was an excellent clinician. I just didn’t feel that he was my “Partner in Care”. Then again, I wasn’t really doing much to help myself either. I learned over the years that doctors and patients truly need to work together and each be an integral part of the team.

As the years went by, I became more short of breath more easily. It is difficult to notice as the progression of COPD is often quite slow. By the time 2011 rolled around, I was having a much harder time doing the physical part of my job. Fortunately, I had a crew and a team that I shuffled much of the physical labor off on. They somewhat understood and helped as they could but it was about then that I started accepting the fact that I would not be able to be like the bunny in that battery commercial and just “keep going and going and going”.

I started looking up more information about COPD online as well as researching Social Security and how/if/when I might qualify for disability. I didn’t learn as much as I thought because when I needed to take that step I got many huge surprises.

In early December of 2011, my boss called me into his office. This was not the first time we had had a discussion about my lack of performance. He truly didn’t want to let me go and even offered me a chance to resign. Well, I knew that my working days were done. I also figured that if I resigned voluntarily it could hurt my chances at claiming disability. So, I declined to resign and was terminated. It was almost a relief to me!! I cleaned out my office and drove directly to the local Social Security office and began the process to file for SSDI. And thus, yet another major chapter in my life began.

No one had handed me the handbook, “COPD 101 for Dummies”. Most likely, because sadly there is no such book that I know of.
Here I was at age 55 with no job. No one had told me that there is a mandatory 5 month wait period before SSDI kicks in. No one told me that only about 30% that apply for SSDI are even approved the first time. So, what was I to do to afford to live and eat? Since my insurance had now ended and I certainly couldn’t afford COBRA or private insurance, how was I to afford medical care, refill the prescriptions monthly on my inhalers, replace the oxygen concentrator I now needed at night to sleep with?

Again, I didn’t have a handbook. Thus began my journey into advocacy to help other patients, and it began with my having to figure out all of these things on my own.

Fortunately, I had a couple rooms in my house that I rented out which covered the bulk of my mortgage and utilities so that was a huge break for me financially. For food, well, I swallowed my pride and went on food stamps. Being in the Phoenix area, which has many elderly retirees, I looked to Craigslist for a used oxygen concentrator and found one for $150. It was actually a newer model than the one my insurance company had been providing to me. Next, I needed to figure out how I would afford my expensive inhalers. Respiratory maintenance inhalers are in excess of $350 a month each, cash price!! I discovered that most pharmaceutical companies have patient assistance programs. Since I had zero income and zero insurance it was practically an automatic acceptance. Whew!!

Now, what about seeing doctors? Again, I searched and searched and discovered clinical trials! I could be evaluated with no obligation…..at no cost! Obviously, I wasn’t about to just sign up for anything. It had to be something I felt would actually help me. One or two trials I didn’t qualify for after the full evaluation, yet I received all the testing (and more) that would have been done had I continued to see my pulmonologist. Add to all this that it dawned on me that by volunteering my time in the studies, I was helping research, improving science, and the results would benefit the entire COPD community. And this time, they were paying ME!! I felt both valued and blessed.

Finally, what I was lacking was the ability to talk with others that had COPD; to commiserate, to share our stories, exchange tips and tricks, just to have a cup of coffee together. I discovered the Better Breathers Clubs sponsored by the American Lung Association. I had no idea how wonderful it was to simply sit around the table with others ‘just like me”. I say “just like me” but I recognized that we are all different. COPD is not something that affects each person the same way. There is certainly enough in common though to create a true bond. Although by now, I had learned a great deal about COPD through my insatiable thirst for knowledge and my online research that had gotten me to this point. I found I was able to offer help to the others by sharing what had worked for me. Still, I looked forward to our monthly meetings regardless of who the guest speaker would be that month or what the topic would be. I was helping myself by helping others.

One day, the facilitator at Better Breathers asked if I would like to put my name in to be a “COPDAmbassador”. A major pharma company was revamping their website and wanted 8 or 9 patients to share their stories, speak at a new drug launch, and be filmed for sections of their website. I jumped at the chance and was lucky enough to have been chosen. Those selected met in Chicago and were sequestered on the 9th floor of the Marriott on the Magnificent Mile. We spent almost 3 days learning pharma lingo, understanding the strict compliance, legal, and ethics issues that pharma companies are held to, and taught how to speak on stage to draw the audience in. If you remember, at the beginning I mentioned that I was generally an active person. I had not been doing much and this opportunity almost gave me new life. All of a sudden, I felt I had purpose. I felt that once again I could contribute while at the same time representing everyone with COPD. And that, dear reader, was my “Aha moment”. Yes, I was still smoking! Here I was being groomed to go on the national stage and talk about my COPD. During our breaks while practically locked up on the 9th floor, I discovered the freight elevator and would sneak down to Michigan Avenue and have a quick cigarette. When I got back home, I put my plan in place to quit smoking.

For many, their “Aha moment” is a major exacerbation of their COPD or a hospitalization. For me, it was realizing that I had been handed a wonderful opportunity to play a part in representing all of us and I was being a hypocrite. Thus, I quit smoking January 7, 2013….just over 7 years after my diagnosis. I was now classified as Stage 4, but on the same inhalers. Thankfully, though my COPD had progressed, it was relatively stable.

Some months after that training meeting in Chicago, we went to Orlando to the launch of a new inhaler for COPD and had the opportunity to tell our stories on stage in front of thousands of pharma salespeople and corporate staff. From the comments afterwards, I was amazed that the salespeople had never met a patient, never heard a patient story, never had been told of the daily struggle we go through. To give them the patient perspective was so important to me. They are partners too.

So, that is my journey. Since then, I have become even more active in an advocacy role by working on different patient partner advisory boards, traveling to Washington DC and visiting Congressional and Senate offices to ask for their help in better legislation, speaking at a Congressional Briefing on COPD, and working with the COPD Foundation.

When I speak to patients, especially newly diagnosed patients, I try to get them to understand that it isn’t the end of anything, but rather just the beginning of a new chapter in their lives. And the good news is that it’s their life so they are the author and can choose whether their story will be a tragedy, a drama, or maybe a comedy. Enjoy your life and keep doing what you can. Some things you just will have to do a bit differently or a bit more slowly. Taking your inhalers as prescribed and seeing your doctor is important, but staying active and keeping a good mental outlook is equally important. I have stressed being Partners in Care, well the patient is part of that equation and we have to do our job as well.

In closing, please let me say that to help make a difference in the long run for all that are touched by this disease, we all need to band together and be Partners in Care: patients, caregivers, physicians, researchers, other clinicians, scientists, pharma, industry, legislatures, payers…..All of us. And all of us need to include the patient, because, “If It’s Without Us, It’s Not About Us”.

My Motivation and Inspiration

My motivation is simply that advocacy has become my calling. It gives me something to do. It provides purpose in my life. I cannot just sit around and do little to nothing at my age of 64. I so enjoy being a voice, a face, and someone that helps promote the need for awareness, educations, legislation, research, and an overall change of perspective from both government and the public in general.

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