Dear Mr. President and Members of Congress,
When my husband and I discovered that we were pregnant with our first child, we were elated. We had been trying for 9 years, off and on, and had all but given up. Plans were made, rooms were painted, dreams of who she would be and how we would guide her into this world were formed. We would sing, and finger-paint, and carry her in a sling. We would feed her organic food… and we would certainly never yell! Our lives would be complete, and we would be a happy family of three.
In March of 2008, we learned that our, then, 3 month old baby girl was terminally ill. We sat in a conference room while our baby, Kai, received plasma transfusions, and a doctor placed her hand on my knee and told us our daughter was dying, and there was nothing she could do. She would have to be transferred to another hospital, and they weren’t sure if she would survive.
We arrived at Georgetown University Hospital in Washington, DC. From there, she went through a whirl-wind battery of tests, and was diagnosed with end-stage liver failure, caused by a rare condition called Biliary Atresia. The cause was unknown, and she was so advanced that the only measure would be organ transplant. We went home on hospice not long after, understanding that an organ may not become available in time.
Fortunately for us, my husband was a match. On April 9th, 2008, they were both wheeled into surgery. Seven hours later, my baby had a “new” liver. She had many other complications, however, and required another surgery to remove a blood clot and stop internal bleeding into her abdomen. She came out with a collapsed lung, unable to take any food by mouth for months. She was fed through an IV line that went to her heart.
Following this myriad of surgeries and medical procedures, while my husband was still recovering himself, he lost his job. We were able to maintain coverage through COBRA until he could find another position, but it was expensive, and we had thousands of dollars racking up in medical bills. Our friends and family raised money to help, but the costs were truly astronomical, and we went for over a month without a paycheck.
Meanwhile, our daughter was in and out of the hospital for the next 3 years. Her immune system was suppressed to keep her from rejecting her new liver and she became ill easily and struggled to fight it off. Often needing blood transfusions, low-grade chemotherapy, and IV antibiotics to help her body rid itself of a virus or bacterial infection. On occasion, the insurance refused to cover it, and we had to pay out of pocket. Sometimes the medications were in excess of $1,000. Sometimes, an X-Ray was denied. Other times, a particular doctor at the hospital wasn’t covered under our plan. We incurred out of pocket costs that far exceeded those detailed on our plan.
As insurance costs rose, our premiums, out of pocket maxes sky rocketed, and our health insurance provider continued to find loopholes to deny coverage to sustain our daughter’s life, we realized the only option we had to afford out daughter’s care without financial ruin was to start our own company, and select our own plan. This was about the time the Affordable Care Act (ACA) went into effect.
We attempted to purchase a plan through the Maryland Exchange, but the issues with that process had caused such a back log, we feared a lapse in coverage would occur, even with the preexisting condition clause being signed into law. Thankfully, the non-profit health insurance provider we selected moved mountains to make sure that didn’t happen.
We were finally able to get Kai the care she needed, without constant battles and stretching our budget to extremes. I cannot begin to describe to you the sense of relief I felt after that first year. As Kai’s condition stabilized, we were finally able to begin to live a “normal” life.
Now 9 years old, Kai attends public school. She has severe PTSD from waking up during a surgical procedure, which not only makes it difficult (sometimes impossible) for her to get routine tests, but it also causes disruptions in her daily life - panic attacks, anxiety, and ADHD-like symptoms. Her school implemented a 504 plan, and she has an EIP. Classes she was previously failing, she has an opportunity to excel at by making a few basic modifications. She feels safe at school because she has a school counselor and support staff that know her and are available to her when she is struggling. Unfortunately, many private schools in our area do not provide these services. We’ve looked.
Recently, our non-profit health insurance carrier was forced out of the Maryland Exchange. They became a private, for-profit carrier, and our rates have increased substantially, each year. This past Monday, I received a call as I was dropping my kids off at school. I was informed that our health coverage would be terminated by the end of the business day due to a payment error - the rates had increased again and we had not adjusted our automatic payment to account for the difference.
Furthermore, the American Health Care Act of 2017 just passed congress. While it states that the preexisting condition clause will remain in effect, it gives states the option to “opt-out” in favor of federal subsidies to create high-risk pools or to subsidize the health insurance companies directly to lower premiums. However, high-risk pools haven’t worked well, historically. There are often long wait lists, and people are shutout due to lack of funding. As for subsidizing the insurance companies, wouldn’t allowing them to opt-out give them the ability to deny preexisting conditions, while lowering their premiums for healthy individuals, all the while increasing their bottom line?
Even if these were viable options, the $8 billion set aside for 5 years to cover these programs is not nearly enough to cover those with preexisting conditions. Experts say that it would cost $15-20 billion ANNUALLY to ensure that those with health issues, like my daughter’s, would be able to continue to receive coverage.
So, here we are, facing a lapse in health coverage with our child who has a life-threatening illness that will require life-long, costly medical care… for the third time. Here we are, looking at our beautiful, vibrant child who has struggled so hard just to have a chance at this life, and realizing that she may not be able to receive the care she needs to live - not just someday, but in the near future. While we would sell our very souls to ensure that she gets what she needs, I know that sometimes, that is not enough. We have two other children to provide for now, too.
In addition to the issues we face in healthcare, we’re told that the funding for IDEA, which provides the accommodations for our daughter’s 504 plan, and her IEP, will most likely be cut. That we will have “school choice”… a choice of schools who don’t provide these programs that level the playing field for children with disabilities.
You want to talk about a population that is marginalized? I run a charity for families like ours, and I have seen them struggle in high-risk pools, and be denied by programs like Medicaid, just to get the care their children need to survive. Many don’t have any private schools within miles of where they live. Some work multiple jobs just to try and put food on the table, or drive their child to doctor’s appointments and the hospital, meanwhile staying up all night to tend to feeding tubes and medication schedules. Many times, they have to choose between buying groceries, or buying their child's medicine.
You are leaving an entire population out of your decision making process. WE ARE PREEXISTING… And we vote.
