The 'Nightmare' Health Insurance Can Be for a 26-Year-Old With Chronic Illness

My 26th birthday was something I had been planning to tackle for a few years now. Being a patient with Crohn’s disease, I was prepared for the inevitable research of delving into health insurance options.

What I wasn’t expecting was the deluge of misinformation from my doctor’s office, the constant back and forth between insurance, doctor, nurse, and pharmacy, and the longest delay in medication I had ever experienced. Of course, it didn’t help that my medication was supposed to be administered the same week my new insurance started. However, the plethora of issues made what I expected to be a one week delay into a four-and-a-half week delay in medication.

It was a nightmare. A total headache.

And it was unavoidable.

Autoimmune diseases are rough. Crohn’s disease is especially taxing for anyone that is a foodie, or just everyone because — ya’ know — eating. I’m constantly tired, constantly battling stomachaches, and constantly wondering how I’m going to feel after eating food.

I have enough restrictions and concerns to worry about in my day-to-day life, and it’s exceedingly unfair when my disease (something that is a big part of my life, as much as I try to acknowledge otherwise) takes up the majority of my time. I still need to work, eat, sleep and have a social life. I don’t have the time nor the mental capacity to deal with the problems that were forced upon me when I switched insurance.  

Turning 26 years old seems to be a new milestone for adult life. No longer can children rely on their parents for medical help, and no longer can they play the card of ignorance when they need to see a doctor. Instead, 26 has become a road bump for some, and a nightmare for others like myself with chronic illness.

Of course, the Affordable Care Act came with plenty of benefits. Allowing children to stay on their parent’s plan until they turned 26 is especially helpful for millennials, many of whom are struggling to get employed or to receive a job within their career path.

However, in my opinion, the push for universal health care through the government scared insurance companies into becoming considerably more demanding and restrictive. Instead of health care companies offering the best that the customer could afford, in my experience it seems like they began to ultra-privatize as a defensive response to the new laws.

I had to find this out the hard way when I was trying to get my normal Remicade prescription.

Remicade is a medicine that is administered strictly through IV and must be handled by a trained professional. I assumed that with my new insurance, it would simply mean a new group would be getting my bill and I could continue to go to my normal infusion center for treatment.

Instead, I found that the only way they would cover my medicine is if they ordered it through their private pharmacy. The hospital I normally used decided they would no longer work with private pharmacies a few years ago, so I had to switch to the private pharmacy’s infusion center.

Not only that, but I had to pay up front for my medication, and the nurses fees wouldn’t be covered by my insurance. The medicine cannot be administered without the help of a nurse, so no matter what, I was going to have to pay for that nurse’s time.

Remicade is vital to my health. It’s simply not something I can give up or replace without suffering through a few months of flare-ups. It was previously something that was almost 90 percent covered and easy to receive. With my new privatized insurance (a better option than the government’s health care, but not by much), it was considerably more expensive and considerably harder to get.

Couldn’t the pharmacy and health insurance company see that it’s not an addictive drug? It’s not something that can be easily replaced? It’s something essential to my well-being and controlling my condition? Apparently those factors didn’t matter in terms of what medications I could afford. I was lucky to still have the financial support of my parents, but that won’t last forever.

But this wasn’t the only obstacle I faced; this was the most minor issue in the whole debacle. A bigger issue was the electronic health records (EHR).

Within the Affordable Care Act, there was a seemingly wonderful addition of a push for electronic health records: a shared network of information on a patient that doctors can view from at any hospital or office at any time. It sounds almost utopic. However, the transition has been frustrating and slow.

My experience with EHR is simply that it doesn’t exist in my little city. With one doctor’s office, one specialist’s office, a hospital (for infusions), and a pharmacy, I found myself running between all of them to update my information. It took nearly half of a working day (because office hours are only during weekdays) to update all my information and figure out what I needed to do next.

For whatever reason, universal record systems are struggling to be “universal” in my town, and I know this can’t be isolated to my city. Although the process for implementing EHRs seems to be a simple nine-step method of planning, adapting, and training — as demonstrated through the Health Resources and Services Administration — the reality is that few doctors seem able to transition. So when it came time for me to transition to my new insurance, I was forced to do all the work that the EHRs were supposed to streamline.

On top of this, miscommunication from my nurse resulted in an extra week and a half of waiting time while my doctor sat on my paperwork that I needed signed. Overall, turning 26 should have just been another year, but it instead turned into a nightmare of a milestone.

Of course, I don’t want to tell this story as a way to induce fear into the hearts of anyone with chronic illness approaching 26 years old. Instead, I want to use this as a cautionary tale: prepare ahead of time for this event. Look into what options there are available, find professionals that will help you sort it out, and consider what extra steps you need to take before you make the switch.

It’s tough for millennials — what with the underemployment and constant debt — and I hope that somehow in this job market you can get the insurance coverage you need. Unless America makes some serious changes in our healthcare system — here are some ideas — we, the people with chronic illness,  are constantly going to be battling a “healthcare headache.” Do your research, get prepared, and maybe this speed bump in the road of life will be a little less of a pothole and a little more of a smooth bump.