Chronic Disease Communities’ Voices Need to Be Heard in the Halls of Power
As an engineer, quantifying things is a necessary part of my life. I joke to myself that you can apply a numbers-based approach to any thought process. But, as I’ve learned in my time with cystic fibrosis, a by-the-numbers approach doesn’t necessarily give you the full picture.
I’m writing this column from my doctor’s office. Those of us with a chronic disease know how much time we spend waiting in reception rooms for medical appointments. And as we wait, anxiety can run high as we play out potential scenarios in our heads. One that’s been plaguing my mind recently is our overall healthcare system’s impact on my treatment.
Taking care of ourselves can be a full-time job. We can put an immeasurable amount of time into self-care that’s aimed at maintaining our health or making it better. Some of us become good at this. We comply with the guidance we receive and adapt.
Another health-related job that can take a lot of time is making sure our doctor, hospital, lab and medication expenses are covered. This often involves fighting with insurance companies that are supposed to cover our bills.
This tussle can be one of the most frustrating healthcare-related jobs around. Taking care of ourselves is one thing, but navigating the complex healthcare coverage environment is another. Yet the slightest ripple in coverage can have life-altering consequences. This is why I’m worried.
As I said, I’m a numbers guy. But healthcare numbers have been driving me nuts the past few months. We Americans are facing a major revamping of our healthcare insurance system, and I’m trying to make sense of it — but can’t.
One reason is that too many variables are involved in Congress’s attempt to revise our healthcare coverage. Another is that many of the conversations about the overhaul in the halls of power are occurring in secret, leaving us guessing about what’s coming next.
I can’t quantify what will come if the legislation passes because I don’t know its content. As a numbers person, I feel stuck. I’ve been without insurance before, and I’ve struggled for years to obtain treatment or medication, even under current government healthcare policy. So when there is no observation tower that lets me see how I can treat my disease, I get worried.
These past few months, I’ve been on Capitol Hill, where Congress gathers, multiple times. I’ve met with Republicans and Democrats, always delivering the same message: please be aware of my disease.
Those of us with rare diseases, such as pulmonary hypertension, are a voting bloc that our politicians can too easily forgot. In a way, I don’t fault them: The population of those with cystic fibrosis and pulmonary hypertension is small compared with other diseases, like cancer or hypertension, which is high blood pressure.
This means we need to fight harder to make our conditions and needs known.
Please, share your stories with those in government. I’m not coming at this from a political perspective. In my opinion, access to proper healthcare shouldn’t be up for debate. We all should have it.
The stories, struggles, and thought processes are unique from chronic disease to chronic disease. Please give your disease community a voice in the halls of power. Let’s make our conditions, struggles and needs known to our politicians.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.