When we’re growing up, I imagine many of us are not thinking about the costs of healthcare. For many kids, healthcare means a Band-Aid with disinfectant and a kiss on the knee, and a few trips to the doctor’s office for dreaded shots. A child’s focus never wanders beyond the brief pain associated with either of these experiences (or the lollipop reward), and certainly never to the health insurance system.
I went to the hospital more often than I would’ve preferred as a child. X-rays of my body might fill a scrapbook. No matter how many visits, even when it was a consultation for a possible surgery, the thought of who was paying for my care (and the cost of others’ healthcare services) never crossed my mind. One reason is that I had access to some of the highest quality health coverage available, thanks to my dad’s service in the U.S. Navy. Thinking back to all of those afternoons sitting in waiting rooms, playing hangman with my mom, I never thought I had a “pre-existing condition” that would deem me ineligible for care.
It’s no surprise that one of the most popular parts of the Affordable Care Act (ACA) is the provision that allows children to stay on their parents’ health insurance until the age of 26. Some might dismiss it as another contributing factor to delayed adolescence, while ignoring the reality that it can serve as a critical lifeline to young people just starting to get a foothold in an economy where it can still be a struggle to find a job. I was an intern, more than eight months out of college, when some high-altitude pulmonary edema sidelined me in a San Bernardino hospital and left me with a Leaning Tower of medical bills. There was no ACA and, technically, I was no longer eligible to stay on my parents’ insurance through the military.
To pay for the care that kept me alive, I could either register for an individual plan or I could attempt to qualify as an indigent of the county, a sort of “last-ditch” effort for people who couldn’t afford to pay for insurance. Unfortunately, I didn’t qualify, but I also was turned away from private insurance coverage due to my pesky “pre-existing condition” that would raise my cost of care. I had gone from not thinking about the cost of care to feeling anxious about how I would pay down these bills that climbed to thousands and thousands. I’m thankful that I was able to resolve this situation and get my account back in the black. Not everyone is so fortunate or has the support structure to make that possible. This is exactly why it’s important that the ACA, and its protections that don’t deny people with pre-existing conditions, remain intact.
Being sick in America can get really expensive. I came face-to-face with this reality during my PH diagnosis. Medical prescriptions, pulmonary rehabilitation, oxygen — none of this comes cheap. I’ll never forget when I went to get my first supply of tadalafil and the initial cost was $738 — for a month. Here I was, trying to wrap my head around the medical realities of PH, but all of that is replaced with incredible anxiety about how I’m supposed to pay this every month, all to keep my arterial pressures down so I don’t end up in the hospital again. A huddle with my doctor, the insurance company, and with the availability of generics, I was able to bring the price way down. But getting affordable prescriptions shouldn’t require such acrobatics.
I think about health insurance more and more now that I have PH. Not just the affordability part of having coverage, but the quality of that coverage and how it can dictate how I manage this disease. Whether somebody is enrolled in an HMO or PPO can make a huge difference. I recently switched from the former to the latter courtesy of my new job. I can speak only to my experience. My HMO provided more limitations than opportunities to access better care. The doctors who helped diagnosis me in the hospital were practically walled off to me because my insurance wouldn’t cover follow-up or rehabilitation with them, even though they’re some of the leading experts in the greater Washington, D.C. area. Getting a second opinion felt nearly impossible because my insurance only refer me only within the network — doctors I had already seen — and the out-of-pocket costs to see an out-of-network specialist were prohibitive.
Thanks to my new PPO, I get to reunite with my diagnosis team in a few months and build a new care program with them. Yet, it’s very troubling that improved quality coverage outcomes were linked to changes in employment. When fighting a rare disease, certainty in available health coverage is paramount. As PH progresses, I want to know that I will have a dependable team of doctors to change up treatment protocols as needed. And if the day comes when staying employed is no longer viable, I want to know that there will be options to maintain that certainty of coverage.
At a time when people no longer stay with one company for the length of their career, it doesn’t make sense to link access to healthcare to employment. Nor should access to care be viewed as a luxury for the better-off among us. It should be considered a foundational right on which we build strong and productive lives, especially for those of us fighting diseases.
This is why I believe the debate about the fate of the American healthcare system is so critically important, and why we cannot afford to not think about it. Congress has until Sept. 30 to make changes to the ACA using a 50-vote majority. After the defeat of the ACA repeal in the Senate over the summer, it is anyone’s guess where things go from here.
We all have a stake in what healthcare looks like in this country. I know I can’t afford not to make my voice heard.
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.
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