Gloria's story: Part one

Gloria's Story

My name is Les Rogers. I am the father of a little girl by the name of Gloria, and I am writing this with the hope that her story will make our society look a little deeper at the two-fold tragedy of any significant medical crisis. The first tragedy is the crisis itself, and second is the tragedy of the crushing medical debt that cripples families and causes many parents of ill or disabled children to be driven to bankruptcy and beyond. Gloria was born with a rare de novo mutation that caused Cardio Facio Cutaneous syndrome. This syndrome led to another major medical condition called West Syndrome/Infantile spasms that induces seizures and global developmental regression.

Initially Gloria was misdiagnosed as having focal seizures while an inpatient in a HMO hospital for two weeks. There was a constant push to discharge Gloria without a good handle on her condition; this push continued even while her condition was changing and worsening. Her condition deteriorated significantly, and the seizures morphed into a more classic Infantile Spasms presentation. The neurologists refused to repeat an EEG, and a behind-the-scenes war began within the hospital. Some doctors wanted Gloria’s treatment to be changed, because they knew that she was on medication that would mask the symptoms of Infantile Spasms. In the end a doctor walked in and told us to be prepared to take an air ambulance to a hospital in Portland Oregon. Upon arrival in the Portland hospital, I showed the video of the seizures to the doctors, and they immediately ordered a repeat EEG. Gloria was diagnosed with Infantile Spasms that evening. Mistakes happen and they can be forgiven, but what happened next was not a mistake. It was a willful disregard for my daughter’s basic human dignity by the same HMO insurance company that was incapable of adequately caring for her previously.

Gloria had been misdiagnosed for two weeks by the time she was finally correctly diagnosed in Oregon, and with Infantile Spasms hours make a difference. The brain is basically constantly seizing (hypsarrhythmia), and the seizures cause brain damage and regression. Gloria soon lost the ability to eat by mouth and had to have a nasal feeding tube placed, which caused her to retch frequently. Gloria was stabilized and placed on the first Infantile Spasms medication, Prednisone, because it was cheap and readily available (not necessarily because it was the best treatment). I immediately began working on the second of the three frontline treatments for Infantile Spasms, ACTH (Acthar Gel), in case the first treatment failed to work. Gloria was released from the hospital, but there was a problem. The insurance company refused to pay for Gloria’s feeding tube supplies and suction equipment. The hospital couldn’t release me without a way to feed Gloria and keep her alive with suction. The insurance liaison was telling me if I didn’t get out, I was going to have to start paying out-of-pocket. I was so sleep-deprived and weary of the constant fight that I gave them my credit card number and paid for the equipment and supplies myself. At that point, I figured I am going to be bankrupt anyway and the stress of the hospital was making Gloria miserable.

Gloria got some seizure relief from the Prednisone, but the seizures quickly returned. We ended up right back in the hospital, and the inside joke of hospitals practicing ABD was born (always be discharging). The insurance company was constantly trying to push Gloria out the door. I finally pleaded with the hospital to get the insurance company to let us stay, and I implored them that I can’t keep her alive with the 24/7 suctioning that she needed, the tube feedings, the vomiting, etc. I needed the equipment of the hospital to keep her alive. She was, thankfully, kept in the hospital after several discharge attempts led us right back, including an ambulance ride from our new residence three hours away which cost the insurance company and me a huge sum of money. 

ACTH is a drug that has been around since the 1950s as a treatment for infantile spasms, and in the early 2000s the drug cost hundreds of dollars a vial. But a decade or so later, I paid $33,500 a vial, after a company called Questcor bought the drug and raised the price through the roof.  People I know in the Infantile Spasms community have paid upwards of $40,000 a vial. The treatment lasts many months, and a patient uses about two vials a week. 

When I found out the price of this drug and that the price was causing a behind-the-scenes fight that was delaying her care, I was sickened. Eventually, after the prednisone was deemed not to be working, the National Organization of Rare Diseases shipped a vial for Gloria, and the federal government picked up the exorbitant tab. My insurance company was still fighting it, and Gloria was still seizing. A side note is that the hospital seemed to have had a vial available the whole time, because the shipment had not arrived yet. When finally the doctors demanded the medication, it appeared. It makes me wonder where that vial came from. (The comment was made to me that the medication was expensive, and that the hospital needed verification they would be re-reimbursed; this should not be a consideration when someone’s life is on the line.)

Finally, the seizures were brought under control with the last frontline medication for Infantile Spasms known as Vigabatrin. Gloria had regressed to the state of a newborn and was blind/suffered from cortical visual impairment. Every second of delayed treatment still weighs on my conscience. Gloria needed a feeding tube inserted to replace the nasal tube, because as she awoke from the seizure daze, she began to retch non-stop with the nasal tube hundreds of times a day. There were very tense meetings in which doctors and I would argue over her getting the tube placed, as she dehydrated from vomiting. Eventually, the doctors admitted they didn’t have the operating room space available, which was a perpetual problem, and that is why she was not getting the tube placed. I then walked through the hospital looking at all the non-essential items in the hospital, and wondered where all the money was going if they didn’t have enough operating rooms to perform the core function of a hospital.  

Gloria was already failing to thrive and off the bottom of the growth charts, due to the feeding issues innate to CFC syndrome.  I felt we needed to take action or we were going to lose her, after all of this. I did everything I could within the law to get Gloria the care she needed, but it shouldn’t have had to come to that. Eventually they performed the surgery, and one of the other doctors told me that if I hadn’t done all I did, Gloria would be dead several times over. Which made me think how many little ones are lost, because their parent wasn’t a former football coach. The monetary bottom line should not supersede someone’s life. For my daughter, there were many times I felt the cost of her care, the chances of her survival, and the future costs of keeping her alive were being weighed by the insurance company making decisions about her care, rather than focusing on getting her well.

Then the medical bills came pouring in, and it started to consume my family. The California branch of our insurance that shipped us via air ambulance because they couldn’t adequately care for Gloria in their hospital refused to pay for any treatment in Oregon. This was ridiculous, and the Oregon branch of the insurance refused to pay as well. This left me in limbo. I had to get both insurances, the hospital, and myself eventually on the line to come to an agreement as to how everything was going to be paid for. I had to utilize my arbitration skills, and in the end it saved the California branch of the insurance money. We ate into our savings, handed over the money from the sale of our home, and then some. We paid multiple high deductibles that year with the job changes and barely staved off bankruptcy by fighting tooth and nail on the hundreds of bills from the hospital, every doctor, and every specialist who walked through Gloria’s door.  Nearly every fifteen minute inpatient visit was a $500 bill. The medical industry extorts the inelastic demand for their services and has prices that are detached from reality and that feel dreamed up. I spent hours every day for the next few months on the phone, fighting insurance and billing companies. I delved deep into the second tragedy of a medical crisis, the looming bankruptcy that was staring my family down as bills slipped into collections. I tried to find a job to help dig my family out of debt, but I am a teacher and many of the bills amounted to several years' salary in Oregon for ONE bill.

The final insult came in the form of a delayed test result. Our insurance company had approved and administered a genetic test at the urging of the inpatient geneticist at the initial hospital Gloria was admitted to, before being sent to Portland. The test was run in February of 2014, and the results were made available to the insurance company in April of 2014. On the last work day in August 2014, I called, as I had monthly for the previous five months, to check on the status of the test. I was told it was still not finished. I then called the testing company directly, and the testing company finally admitted that the test was complete and had been available for nearly five months since April. The testing company was floored when they found out I had never been notified. I then called the hospital back, and they admitted their mistake, sort of. I got a fax that evening from another geneticist in the HMO. They said they didn’t have my correct address. I replied that they seemed to be able to find my address without a problem for the dozens of bills they had sent me over the last five months, and that they had lied in stating the test wasn’t ready. They said they couldn’t get into why the test wasn’t made available on time and hung up. Much of the torment and testing Gloria endured during all those months while in the hospital was to discover the cause of her condition, but it had been known for five months and not disclosed by the HMO or its hospital. 

I filed a complaint with the state insurance commission about all the mistakes that were made. I was listened to and then told that the insurance company had a deal with my state, and that I had to present myself in person before an arbitration hearing. I was at that time the caregiver for Gloria, and one of the few trained in the tube feedings and suction. It was impossible for me to be there in person. They told me I could hire a lawyer, but I did not have the funds to do so because of all the medical bills.

There are many great doctors, nurses, and professionals in the medical field who feel trapped by the system they operate within. Like many industries, the medical field has been divorced from its primary responsibility of serving its customers in favor of squeezing as much money as possible from society. It capitalizes on the inelastic demand (dire need) of its products to garner as large a profit as possible. There are three types of people in the United States: those who have been bankrupted by medical bills, those who are being bankrupted by medical bills, and those who will be bankrupted by medical bills. The United States can do better for its citizens than this, and it is time we stood together for positive change and a sustainable health care future for our citizens.

--Leslie Rogers MPA

Visit Gloria's website HERE.