As we approach the anniversary of the Affordable Care Act (ACA), I would like to express how it has and will impact me and my family. To give you some background, my 25 year old son was born with a rare, “orphan” condition which requires that he be on ventilatory life-support since birth. He was hospitalized for 6 months from birth, came home with home care nurses as we embarked on this journey. He was the youngest child in the Home Ventilator Program at Riley Hospital at that time. As most young parents who haven’t had much experience with illness and medical insurance, we were not extremely well informed of what our private health insurance covered, and totally ignorant of public programs. Since our private insurance didn’t cover tens of thousands of dollars of the initial hospitalization, we quickly became interested in what our government could provide! Unfortunately, our family was over-income for any available programs and Medicaid Waivers weren’t available in Indiana at that time. Fortunately, we were able to muddle through the thousands of dollars per year out of pocket expenses, with the help of extended family and our son received excellent medical care for his serious, chronic condition. However, this wasn’t without some cost to our family in terms of lost employment (it wasn’t cost effective for me to work for many years), uncertainty when the primary wage earner changed jobs, and foregoing of some of the “extras”. Additionally, as he approached adulthood, the options became fewer. He is still on private insurance and is a recipient of Medicaid Disability, which covers the expenses above and beyond what his private plan covers. He works and goes to school part time and couldn’t afford to cover the out of pocket expenses his condition incurs at this point in his life. So, one of the reforms from the enactment of the ACA we’ve already benefitted from is that our son can stay on his private insurance plan until he turns 26 years old. This will also help our government, as it reduces the costs to Medicaid.
I am also a breast cancer survivor, and since my employer doesn’t offer insurance, I have had an individual plan since 2004, before I was diagnosed. My premium is $699 per month, with a $2500 deductible. My employer offers a stipend towards insurance coverage, but it still leaves me with a tremendous out of pocket expense. This premium has increased 163% since 2004, from $266 to $699/month, and the increase is NOT because I had breast cancer. This increased rate affects everyone who elected this particular individual health plan. I am hoping to access the Health Care Exchange insurance program in the future, if that provision of the ACA is not repealed, at a reduced cost.
I believe we have one of the best health care delivery systems in the world and am so grateful to have access to excellent physicians, hospitals, and other providers but have foregone many tests and procedures that I should have, because I simply can’t afford any additional out of pocket expense. I am willing to pay a significant portion of my insurance, but feel that what I’m currently paying is unreasonable and most people in my situation would just “go bare”. As a responsible citizen, I can’t go without insurance---I know first-hand the financial devastation that can cause and I have history of a serious medical condition. I also feel like I’ve been a conscientious consumer for myself and my son, but you don’t get any credit for that in this system. We all need to work together to improve the health care delivery and reimbursement systems, without sacrificing the quality and access. Hopefully our lawmakers, insurance companies, healthcare providers and lobbyists will hear my story, among others, and do the right thing to improve the affordability of health insurance while maintaining the standards that we as Americans expect.