Twelve years ago this month my family was in a huge panic to find insurance with a pre-existing condition. Our daughter was born a few months prior and diagnosed with a life-threatening disease at two days old that would result in kidney and liver transplants in childhood. Unfortunately for us, a year prior, my husband quit his job to join our growing, small advertising agency full-time and follow our dream of self-employment. We were on COBRA insurance, offered by law for 18-months from ex-employers and we decided to use it because my preexisting condition (pregnancy) made it impossible to find a policy that wouldn’t exclude prenatal and childbirth expenses.
During the time we were searching for new insurance, we suspected our son had Autosomal Recessive Polycystic Kidney Disease/Congenital Hepatic Fibrosis, the same disease combination as our daughter. We decided on a group policy covering me as the employee and my husband and kids as dependents. Since we needed two, unrelated employees for a “group” policy, one of our employees was on the policy at all times. In full disclosure, since we were forced to have an employee on our policy, we paid their premium, as well as our own. The numbers I’m using here, are our costs, including our employee’s premium because in order for us to have it, we had to pay the full group. The policy we selected included unlimited coverage, meaning there was no cap on dollars spent, because it’s frightening when you’re contemplating multiple organ transplants and follow-up care for two children.
Our Annual Expenses for Our Healthcare Policy Through the Years
January 2002 $13,200 to January 2014 renewal estimate: $37,800
As our rates increased, we decided to raise our deductibles to help lower the premium and in 2013 our family deductible was $12,000 per year. Our pharmacy deductible was $2,000 for the family, raising our known out-of-pockets to $14,000 per year. An average stay for one of the kids in-patient stay costs us approximately $2,000 each time and our E.R. co-pays roughly equal $500-1,000 each visit. We have up to a few hospital admits for each child as well as several E.R. visits every year. At any given time over the years we’ve owed our children’s hospital between $8,000 -$20,000 for which we pay on payments monthly, letting the large balance rise a lot and fall a little with our payments, knowing eventually we’ll pay it off.
For 2013, Our Policy and Total Expenses for Healthcare
$32,400 (insurance estimate increase was to be $37,800 in 2014)
$7,200 (pharmacy copays)
$3,000 (payments on hospital account and doctor copays & uncovered)
$3,000 (items and services not covered)
$59,600 in 2013 (actual expenses)
Moving forward with the Affordable Care Act (ACA), also known as Obamacare
In October, like millions of other people, I was confused about how the ACA could help us. I went on Healthcare.gov approximately 10 times over a three week period and was not able to register. I was able to view rates for possible policies, but at the time I didn’t know if we would even qualify. I was under the impression that we had to be uninsured or under certain income levels to be covered. In late October/early November I was able to secure a registration log-in and apply for coverage. I entered all information required including our social security numbers and income from W-2s. I was as surprised as anyone to get several options and without question or hesitation, I applied for the maximum coverage, most expensive policy.
The figure on the screen said $1272 (with no subsidy, as we don’t qualify) much to my disbelief. I walked into my husband’s office with the number, “There’s no way this is right, right? It can’t be true.” I did have to call the insurance company a few times to confirm the receipt of our application which took a little under two weeks. On Healthcare.gov I was only able to confirm the basic benefits of the policy and needed clarification of coverage to make an informed decision if the policy would work for our family. Over three more calls to request a benefits brochure and to verify our childrens’ main providers were “in plan” and level of medication coverage for our childrens’ organ transplant drugs specifically, we made the decision to move forward with coverage.
Our Annual Expenses Under the Affordable Care Act (ACA)
$15,264 (insurance, saving $22,536 from 2014 insurance estimate)
$3,000 (family deductible, saving $11,000 in 2014)
$8,000 (pharmacy copays, slightly increased)
$3,000 (payments on hospital account, which grows annually and doctor copays & uncovered)
$3,000 (items and services not not covered)
$32,264 (Using 2014 estimates, the savings amount is approximately $32,736)
Risks: Organ transplants on the new policy require 20% payment from us and our old policy paid 100%, however, our kids should receive Medicare on the day of their transplants, covering uncovered costs. The kids’ kidney transplants were roughly $170K each and I understand liver transplants are around $250K so you can imagine we are nervous where transplants are concerned but not enough not to proceed. Our kids are stable now and hopefully will be for a few more years or more. We’re always afraid of medicine the kids might need will not be covered, so nothing new.
Notes: The copays on hospital stays, doctor fees and specialty fees for in-network seem comparable to our old plan and low risk. In fact, the mental health coverage looks better for in-patient stays, which we are at a small risk for with our child with mental illness. We currently have over 27 meds we order monthly and it appears a lot of the medication is less expensive, including the kids’ post transplant drugs. We have paid our January premium with our new insurance company we found as a result of the Affordable Care Act.
What the Affordable Care Act Means for Our Family
I like to believe as general rule we should take care of each other in our society. As a nation, we should make it possible for American families to get affordable healthcare without being devoured by the costs of sustaining basic life. As a society we have a responsibility to each other and while there might be adjustments that need to be made, Obamacare is a huge step in the right direction of fulfilling our responsibility as a people.
To say we’re elated and stunned is an understatement. We’re not as at-risk for healthcare bankruptcy as we were, our stress level is reduced so we can focus on our keeping our kids healthy, on our small business to add more money to the economy, and our children get the benefit from living with more financial security for their futures, not to mention happier parents. We can save for retirement and provide more resources for the kids if needed so they have a better chance to reach their potential.
I know we’re a divided nation about Obamacare and I worry next year our healthcare costs will shoot back up. But like living a life with kids with special needs who have a life-threatening disease, I can only hope. I hope our government can figure it out and I hope our political leaders will work together to improve on the Affordable Care Act. I can only speak for our family, but Obamacare is life-changing for us. We now have decent coverage we can afford, which will make all the difference in this American family’s life.
During the President’s State of the Union address tonight I will be at the White House with administration, sharing our positive story.
I can be followed on Twitter at JuliaRoberts1 and myself and others at their hashtag events, #SOTUsocial #AtTheWH. Help share our story.
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