Hello, my name is Kyla [LastName] and on March 1st, 2008, my children became part of the 1.5 million uninsured Texas children. My daughter had been covered by the [Previous Insurance] Plan which closed its program at the end of February. When we discovered we would have to find alternate coverage, I optimistically assumed that HIPAA would protect her and we could simply move to another individual insurance plan. When we actually applied for this coverage, I discovered that wasn’t the case. You see, K is not a typical, healthy three year old. She has undiagnosed neurological attacks that are incapacitating and can last for up to 11 hours. She is deaf in one ear and has to have biannual hearing tests to be sure her hearing hasn’t further deteriorated. In her short life, she has had two MRIs, two CT scans, two lumbar punctures, and three EEGs. Before losing her insurance coverage, she was in developmental, occupational, physical, and speech therapies because of her developmental delays. She sees a geneticist, neurologist, feeding disorders specialist, gastroenterologist, ophthalmologist, audiologist, otolaryngologist, her regular pediatrician, and was due to see an orthopedist prior to losing her insurance coverage. She has been in the ER six times for various issues. She has been hospitalized twice. She is on daily medications for chronic constipation and asthma. Although she is thriving in spite of it all, she is not the picture of a normal, healthy child, and she is too much of a risk for the insurance companies to accept. We were denied coverage. After being denied, we were referred to the High Risk Pool, which was created for children like K, however, we are not eligible for this program because my husband’s employer offers group coverage. Unfortunately for us, the group coverage is not an option either.

My husband’s group plan would cost us 30% of our monthly income and we do not have 30% of our income to spare. On top of that, the insurance they offer is not comprehensive. None of K’s therapies are covered; none of her genetic appointments or tests, and many of the things that are covered have stringent limitations. K’s therapies alone cost over $400 per week. A single genetic blood test can cost well over $3,000. It does not make sense to pay over $900 per month on an insurance plan that will not cover necessary testing and treatment. Half of all working men and women do not have health insurance through their employer at all and many, like mine, cannot afford the coverage their employers offer. Because of this, K has been without vital therapies and specialized medical care for two months. In that short amount of time, I’ve had to cancel her hearing test. I’ve had to cancel a crucial appointment with her feeding disorder specialist. A few months ago her feeding situation had declined so much so that we were beginning to discuss the possibility of a feeding tube, and now I cannot even take her in to see the specialist who can help her overcome these obstacles. If things were to decline further, we have no safety net. There are no treatments or therapeutic options for her without health insurance. We can’t even afford for her to be seen in the feeding clinic without insurance coverage. Due to recent changes in her neurological episodes, the pediatrician recommended another MRI, but that will also have to wait until we find a solution to our health care crisis. Since losing our insurance coverage just two short months ago, my daughter already lacks her necessary medical care, because we do not have access to affordable, comprehensive coverage. Can you imagine what it is like to choose between your financial responsibilities and your child’s health?

My husband has worked as a network administrator for the same banking system for over five years. He is a reliable employee; I can count the number of sick days he’s taken on one hand. We pay our bills on time and take care of our taxes. We are financially responsible and more than willing to pay for our children’s health coverage, this has never been the issue. The problem is that we don’t have the option to do so. The only plan that will accept my daughter and offer her adequate coverage is the state CHIP plan. Unfortunately we are $260 dollars over the monthly income limit set for CHIP. Because we have no other viable options, my husband has requested a pay cut in that amount, so that our children can qualify for proper health coverage. Not only will this decrease our monthly income, it will also cap him out at work. He will no longer be eligible for raises or positional promotions. It shouldn’t be this way; my husband should not have to handicap his career to provide for his children. Families who are willing and able to pay for adequate coverage should be allowed to do so, especially when the children have a serious need for comprehensive coverage.

This can be changed and our leaders can change it. I speak for our family and families like ours when I say we are willing and able to pay for our coverage, we just need to be given a real opportunity to do so. All children deserve access to proper health care, regardless of their health status or income. Mohandas Gandhi said “We MUST be the change we want to see in this world.” Today I stand before you and ask you to be the change my child desperately needs to see in this world. Do it for her, and the thousands like her. Do it because it is the right thing to do.

Written in April 2008.

President Obama,

Because of the work you did, millions of families did not have to face dilemmas like the one our family faced back in 2008 and 2009 (we lost coverage a second time after my husband got an automatic cost of living raise that put us $20.54 over the income limit for CHIP in our state). After the Affordable Care Act was passed, parents no longer had to wonder if their sick children could access the healthcare they desperately need. Kids born with congenital heart defects like my Josephine were not born with UNINSURABLE stamped across their lifespan. They no longer had to worry about lifetime caps of coverage. Kids like my K who became sick while insured didn’t have to fear about what would happen if they were forced to change coverage options. Kids who needed therapies and medical care were not denied on the grounds that they NEEDED it too much. There are still cracks in the system, yes. There is still work to be done, yes. Regardless of the work still to be done, this was a major step in the right direction and I thank you for being the President who gave the gift of protection to children like mine. The need was desperate and I knew the reality of it all too well. Thank you.

Sincerely,

Kyla

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