Patients, doctors, and several leading health groups joined Thursday in the nation’s capital to voice significant concerns about the American Health Care Act.
Leaders from the American Heart Association, American Medical Association, American Diabetes Association, and the American Cancer Society’s Cancer Action Network spoke about how policies proposed in the bill will put critical patient protections and disease prevention efforts at risk.
Cassidy Collins, an active You’re the Cure advocate and congenital heart defect patient, joined other patients in Washington, DC to share her story of why she needs continuous specialized care and why it’s so critical to her living a longer and healthier life.
Read Cassidy’s powerful story;
I wasn’t even a day old when my parents received some surprising news about me…
I was born with a congenital heart defect.
They were told my condition, Transposition of the Great Arteries, could be fatal if I did not have open-heart surgery as soon as possible. So, at less than 12-hours old I was flown to Duke Hospital, where I underwent a procedure that would allow me to stay alive long enough to undergo open-heart surgery. Six days later I had the surgery to implant an Arterial Switch. Although the operations were successful, I have been under the care of a cardiologist for my entire life.
By second grade, I was on my fourth procedure, a cardiac catheterization; since then, I have had two cardiac MRI’s and two more catheterizations. Every year, I have check-ups with my cardiologists and sit through multiple EKGs, echocardiograms and other tests. Chances are high I will need more catheterizations, and maybe even another open-heart surgery, as I grow older. This specialized care is expensive, but absolutely vital.
As a young adult finishing my first year of college, I am already thinking about my future career and how availability of employer health insurance will be crucial to any path I take. I have even gone so far as to structure my college major around the ability to get a job with good medical insurance. If I could, I would major in creative writing. Instead, I have decided to double major in both communication studies and creative writing because I need the appropriate skills to find a job with group health coverage.
My condition and expensive medical care has not just affected my decisions, but my family’s as well. My father has changed jobs because of his own concerns about health care and both of my parents have worked hard to make sure they never let me fall into a coverage gap. At times, they have had to borrow money to pay the high cost for COBRA coverage so my heart defect will not be considered “pre-existing”.
I cannot afford student loans because I must be prepared to pay a lifetime of expensive insurance costs for my medical care. Even though I don’t have any surgeries or procedures coming up, I know that in my case anything can happen at any time, so it is important that I always have exposure to good networks. When I go off my parents’ plan, I’ll need insurance that I not only can afford, but that actually covers the specialists I have to see.
I am worried that proposed changes to the current health law will make it more challenging for myself and others who were basically “uninsurable” before the Affordable Care Act. We faced lifetime limits – which were in some instances already met before we stopped wearing diapers. Coverage could be denied, forcing us to pay out-of-pocket just because of a preexisting condition over which we had no control.
Most people my age are concerned about keeping a decent GPA so they can follow their passions and excel in their first jobs. Unfortunately, my passions have had to take a backseat. I am focusing on completing two majors in four years so I can find a job with quality and affordable health insurance. I cannot afford to be limited in the future because of the decisions I make now.
I hope that Congress remembers me and other Americans like me as they consider this health care bill. Young people play an especially important role in our health care system, and I want to be able to count on having adequate and affordable health insurance options when it’s time for me to buy health care coverage in the not-so-distant future.