Chronic Disease Communities’ Voices Need to Be Heard in the Halls of Power

Reid D'Amico avatar

by Reid D'Amico |

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Every time I visit my clinic, I get anxious. How can anyone with a chronic disease not feel like a bundle of nerves when they’re on a doctor’s visit?

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.


Andrea Rice avatar

Andrea Rice

Believe it is great you are on Capital Hill meeting and greeting and discussing what you can about healthcare, but you do worry way to much and this may do you in more than the disease you suffer from. With this said, I have no healthcare coverage, can't work, have no income of my own. Suffered a severe trauma back in 2010 and the hospital I went to found out have this policy they have to take everybody that goes there and I was so impressed with how I was treated I asked if the hospital has medical clinics I could go to. They do. I see a variety of different interns and I pay a fee for the service based on my situation which comes to $25 dollars. Since I have no income, my adult son takes care of me. I get food stamps, waiting for disability and have been told to apply for medicare even though I'm not in my 60's. It seems there's a small loophole because I wasn't diagnosed with PH when I was young 2 qualify for help and I don't meet the retirement age 4 services they get, I'm in the middle. The cardiologist met knows about my situation and is very understanding. My 25-year-old son has postponed going 2 school because of me more times than one can count on one hand. He works 4 minimum wage and earns more in tips delivering pizzas and this is how we make it. Recently diagnosed Dec 2016 with Pulmonary Hypertension challenging to say the least, I'm not a quitter and neither is my son. The Pulmonologist seen teaches interns and while I think this is awesome (not everyone has the gift 2 teach) a better more proactive way is to have community health fairs so the medical staff can meet the general public in different neighborhoods in every state. My guess is there's many, many folks out there suffering from Pulmonary Hypertension and because they may not have the resources to get the help they need or fear they won't be able 2 afford it, they suffer in silence. If this illness deserves attention so to do all the other illnesses out there as well. I wasn't aware of this illness nor did I know about what a Pulmonologist is but I'm learning. In all states there should be more than one hospital that has to take everybody and fees expected at time of service should be based on what a person can afford. Once I came up with an idea that was rejected 2 be able 2 work off what I owe, I was at the time willing to try it but it wasn't considered. For reasons unknown to me, this was fine at the time. With PH if I can work I would like to figure out what kind of work I can do with the issues that come with having this illness.

Andrea Rice avatar

Andrea Rice

If there's going to be healthcare programs some things are going to have to change. All companies that have yearly profits of millions should be required by law to provide healthcare coverage where they pay one-half and the employee pays the other one-half.

My son makes $7.25 per hour which comes to approximately $400 per month, gets no insurance coverage, only managers do, which I understand is there choice but no one should be excluded.

Chairman's of the Board that get bonuses into the millions should be reduced by 2/3's, if these folks can afford their mega mansions and yearly golf memberships to country clubs, I think they should invest in the employees of the companies instead. And offer bonuses to employees more than just a $25 gift certificate to a local grocery store over the holidays. While it is a nice gesture it's not enough. Not in this expensive world we live in. Make it worthwhile and the majority of the employees won't leave and instead invest their time to making the company with which they work for better.

C. Sturgis avatar

C. Sturgis

Well, I HAVE let our situation be know to my House Rep and Senators many times. One of their staff members literally laughed in my face. NOTHING we can do will help. I have many diseases besides PH; I am a total shut in so I can't go protest. And when the Congress follows Trump's budge to cut 72 billion from SSDI, I will die, along with others who put their salaries into the system for decades, only to have it stolen by rich Americans when we need it to stay alive.

Nice article but you've not said a SINGLE WORD that will help any of us.

Until blood is in the streets, disabled, chronically ill and terminally patients, which all PH patients are, will be abused and literally killed by restricting their care financially. PLEASE - have you a better idea? Best of luck with your health challenges.


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A Conversation With Rare Disease Advocates