More Than Lab Rats
This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research.
Being a single mother living with Inflammatory Bowel Disease (IBD) and a few more autoimmune diseases, while raising a child who also lives with two chronic conditions, is not easy. Sometimes, I swear, our conditions love to host monthly flare parties simultaneously. Who wants to be sick alone? Well… I do. The worst thing in the world is flaring while your child is also flaring. I can handle my pain and discomfort. However, listening to my child struggle to breathe, and not being able to fix the problem, is the worst type of torture. I grew him in my body. I’ve fed him, clothed him, loved him and poured everything into him. My one job is to keep him safe. Unfortunately, I cannot save him from his stubborn bronchial tubes. They laugh in my face when I try. My son’s asthma has been a thorn in his side since he was 19 months old. He had been having trouble shaking what I thought was a cold, until the night I was walking him up and down the hallway to soothe him to sleep and I heard it. His wheeze. Having grown up with asthma, my heart dropped for him. There were so many things I could do for my toddler. The one thing I couldn’t do, was breathe for him. That night started a long battle between me and his lungs.
In 2017, my son was doing well in school and well in his acting career. And then the rain came, which is rare for Los Angeles. Igniting every single allergen in the city, stirring up flares in asthmatics around the county. My son’s asthma was triggered, followed by an avalanche of complications. Ear infections. Bronchitis. Walking Pneumonia. Little Hippo, was an absolute mess. Because of my own inability to work a full time job (lobbying healthcare without a contract to a particular group isn’t exactly profitable) we were relying on CHIP (Children’s Health Insurance Program) for a while to help secure proper medical insurance for Hippo’s asthma. CHIP allowed those of us who made too much for programs like MediCal or Medicaid to still get our kids with pre-existing chronic conditions to have proper insurance to cover all medical needs. I also knew that the hours he was accumulating with his acting would allow him to get the coveted SAG-AFTRA health insurance plan through the actor’s union. So, when Congress pitched a partisan temper tantrum and didn’t approve the funding for CHIP that fall, I didn’t panic. Hippo had booked enough jobs in the fall to cover his hours needed to have insurance through the following year. Having insurance would guarantee the possibility of him taking allergy shots once a month, and possibly starting a biologic for patients living with asthma and eczema. His father and I breathed a sigh of relief. Our son was going to be okay.
There was one thing standing between my son and his health insurance. His work permit. His work permit expired and would need to be signed by the Principal of his school. I didn’t give it a second thought. Hippo had been working since he was 3 years old. We had never had an issue with getting his permit signed before. Hippo was a recognized as a highly gifted student. He was pleasant in class and was above average in his classwork. We had one hiccup in kindergarten with a teacher who discouraged his writing…but we were working through that. Everything was going to be okay. Until it wasn’t. The principal wouldn’t sign his permit. She refused. She cited his excessive absences. Well, between work and his health, He had missed quite a few days. But he wasn’t behind in his work. She expressed concerned. She asked to review his upcoming report card. So, we waited. His report card came. He wasn’t in danger of falling behind, he had not missed a lot of days…she still wouldn’t sign. She was concerned for his health. I expressed the plan we had in place for his health. That his work permit would help him get his health back on track through getting one the best insurance plans in the country. She refused. I began paying cash for Hippo’s care. But his $150/visit bills were stacking up. And his prescription bills totaling $376.04 every single time, were more than I could take. Less we forget I had my own health bills to take care of. I feared the worst for the winter flare up season.
Hippo missed most of January & February in school. Everyday that I sent him to school in March he was sent home because he was wheezing and vomiting. I was reaching my breaking point. The snap came the day I landed at Burbank airport from a 4 day 3 city work trip. I stepped onto the tarmac and my phone rang. It was the school. Hippo had vomited three times and he couldn’t breathe. The volunteer sitting in for the nurse wanted to know why I had even sent him that day. I broke. I had no choice! Not only had I not been in town, but in order to get his work permit signed, the principal told him he could not miss another day of school. That he could show up and then just go home early. I need his permit signed so he could go back to work and get the hours needed for his insurance. And he needed insurance to cover the allergy shots and biologic treatment to help reduce his flare ups. The volunteer huffed and snapped, “Maybe you should just buy insurance for your kid like responsible parents!” I hung up the phone & cried as I ran out of the airport toward an awaiting Uber. If only it were that easy.
Once I picked him up from school and got him settled, I opened my laptop. I felt trapped. Running out of options and money. Every single insurance plan that I would need for him would cost me more money than I was paying as a cash patient. I felt like a failure. Suddenly, I remembered chatting with Lilly Stairs about the company she worked for, Clara Health. I had just been a guest on their podcast, Patients Have Power and was a Breakthrough Ambassador. Why hadn’t I thought of this sooner? Maybe I could find a clinical trial for Hippo. Did they have trials for kids & asthma? I took a deep breath and typed in www.clarahealth.com. The very first image that popped up was a clinical trial for asthmatic pediatric patients in the Los Angeles area for a biologic! It was as if the heavens had opened up and lit a path for me. I quickly made a profile for my little one and inquired. The pre-screening process was very easy. They asked a few questions and then connected me with the doctor’s office conducting the study. It was the easiest medical related process I had been through.
Having been living my whole disease life with pre-existing discrimination, I often saw Clinical Trials in a different light. I saw them as a resource for patients, as well as a blessing. Not only do they bring more treatment options for patients. But for those patients who are unable to get access to treatment options, this is a great way to get treatment. The idea that you are being experimented on, is in a sense true. But in a sense you are experimenting on yourself every time you try a new form of treatment. You have no idea how your body will react or adhere to it. You are always taking a chance. The difference between this and clinical trials, is you’re helping hundreds of other patients in the process. The data your body provides will help pass or eliminate this treatment making way for new options for patients. And to be able to have access early to a treatment that could work, is something I couldn’t say no to, when it came to my son. He needed the help, and our chances were great for him to be able to get that relief he needed while not jeopardizing his health. He was able to stay on his most vital medication while in the trial. So, I wasn’t risking my child’s health. I was actually being proactive in making sure he would soon be in remission with his asthma.
Still having that tickle in the back of your head, questioning if considering clinical trials is the right thing to do? Here were my top 5 reasons for enrolling my child in a clinical trial:
- The medication they were holding the trial for, was a biologic I had considered putting him on, but knew it had not been approved yet for pediatric patients.
- The cost of receiving the medication would be free during the trial and 1 year after. Of which you could get insurance to cover or receive assistance paying for the biologic.
- We were running out of other options.
- He could stay on his most vital medication while in the trial.
- His doctor cleared the study.
I appreciate Clara Health for making it so simple to find and enroll in a clinical trial. It was one less thing on this mama’s very full plate.