Dear Chairman Hatch,
I'd like to offer to testify before the Senate Finance Committee next week about my personal experience with the former and current U.S. healthcare system.
Below is my testimony:
In 2006, at the age of 44, I lost my employer-provided health insurance when left my job to start my own business. I was shocked to discover that even though I was a non-smoker with a gym membership I actually used, in training for a triathlon, with no prior history of cancer or any other major or chronic illness, I was uninsurable according to three (3) private insurers. This due to fibroids mentioned in my medical record that my gynecologist described as "medically insignificant." My remedy to the dilemma of not finding an insurer willing to take a risk on a perfectly healthy, able bodied woman, was to hire an employee I did not need and could not afford at the time so that my company would qualify for employer group health policy.
In 2007-2008, my eldest son, Stuart, who was 15-years old at the time, was diagnosed with a rare brain malformation. He was covered by his dad's employer's insurance, an HMO. He underwent surgery in April at UCLA to correct the problem, unfortunately his symptoms returned six months later so we sought out other specialists.
We found two neurosurgeons with experience surgically treating his malformation, one in England and the other in Iowa. We asked the HMO to allow us to go out of network so he could be seen by the University of Iowa surgeon. They refused our request, so, again, I got creative and hired my husband to work for me so that he could switch insurances to the PPO my company offered. My son was then able to have his second and third surgeries in Iowa. Thankfully these surgeries, in 2008, mostly corrected his problems. However, we still had to pay the out of pocket max of $10,000 for his 12-hours worth of surgeries and 23-day stay in the hospital, not to mention the cost of taking time off work and out-of-state accommodations. This mountain of bills were a contributing factor to Stuart’s dad declaring bankruptcy.
In 2013, my youngest son, Spencer, was also diagnosed with a brain malformation unrelated to Stuart's malformation (Lucky us, right?). Because of the location of the malformation, the neurosurgeon advised against surgery, telling us it would be at best life-altering, and at worst life-threatening. He recommended a wait-and-see approach with frequent MRIs and followups. MRIs are not cheap, even with insurance, and we were placed in the position of having to frequently justify the frequent MRIs with our insurer.
In 2014, after selling my business, I enrolled myself and my children in ACA. I was able to include my children under my coverage--even tho they had pre-existing conditions--because they were both under the age of 26. Stuart, who had just graduated from Reed College with a degree in physics, was in chronic back pain due to his prior surgeries, and became clinically depressed, and even threatened suicide. Thanks to the ACA's expansion of mental health coverage and parity requirement, his counseling was covered by insurance. This counseling likely saved his life. Today, Stuart works as an operations engineer for a NASA subcontractor.
In 2016, our worst nightmare came true. Spencer's cavernous veinous malformation--a cluster of veins the size of a ping pong ball embedded deep inside his brain--ruptured, twice. These two hemorrhagic strokes were followed by a craniotomy and then by the surgery we'd hoped all along to avoid, a resection of his CVM. Spencer spent 56 days in Harborview Medical Center in Seattle, 39 in the ICU and 17 in inpatient rehab.
Fortunately (if one can call anything about this scenario 'fortunate'), he was covered under both my employer's insurance and his dad's ACA policy and our out of pocket expenses were minimal, considering the bills for his air lift to Seattle, surgeries and care amounted to over $1 million. Spencer came to live with me in San Diego, and we enrolled him in a Brain Injury Day Program for purposes of long-term rehabilitation. The only problem was that his insurance would only cover 20 visits with rehab specialists and since he was seeing three specialists a day, he ran out of allowed visits after two weeks.
Because I’d been dealing with the insurance labyrinth that is our healthcare system, I knew just what to do. I researched private policies, created a spreadsheet and compared their coverage for rehab services and then enrolled Spencer in Blue Shield of CA effective Jan. 1, 2017. This move allowed Spencer continue his brain injury day program. He went to rehab 5x/week* for the next six months and was then well enough to move back to his home in Bellingham, WA.
Spencer now lives with his dad in Bellingham working part-time as a bike mechanic. Next week, he returns to school (a year ahead of doctors' predictions for when he *might* be able to return) where he hopes to earn his degree in Manufacturing Engineering.
Spencer's surgeries would not have been affordable and perhaps not even possible had he not been on my or his dad's insurance policy. And make no mistake, he would not have been were it not for the ACA’s provision to allow adult children to be covered under their parents’ insurance. His rehabilitation and return to college would not have been possible had he been denied private insurance, as I was, based on his pre-existing conditions, or if he'd had a parent less seasoned in insurance matters who didn't know her options.
Today, my sons Stuart and Spencer are alive and contributing members of society because they had health coverage. They had health coverage because of protections afforded them under ACA. Ultimately, isn't that what all liberals and conservatives alike want for their children, for them to be healthy, contributing members of society?
I very much hope you will accept my offer to testify before your committee. It would be my honor as a mother, a citizen, and a consumer to tell my family's story in hopes of shaping the best possible healthcare for the people of this nation.
Very sincerely yours,
Amy Roost