Jarrad was just 12 years old when he was officially diagnosed with Crohn’s disease. Now in his 40s, he has been managing this disease for most of his life. When he was first diagnosed, the treatment options were much more limited, and what his doctors recommended didn’t work to alleviate his symptoms.
Growing up with Crohn’s
Enjoying life as much as his friends and peers was impossible. Jarrad’s symptoms were painful and unpredictable, and he had an extremely hard time gaining weight even as he grew taller. Being underweight was very frustrating, because like any other middle schooler, Jarrad was just trying to fit in and be seen as normal.
Teen years and surgery
Jarrad’s Crohn’s disease continued to be under-managed throughout high school. He had to learn to swallow a feeding tube — through his nose, esophagus and ultimately into his stomach — in order to tube feed overnight. That is not something any teenager should have to learn to do.
He graduated high school and moved to college where his diagnosis progressed to needing invasive bowel surgery. He had 37% of his small intestine removed, and although some symptoms improved, he still struggled to gain weight and lived with the stress, anxiety, and discomfort that Crohn’s causes.
The first breakthrough
Finally, in 2000, when Jarrad was 19 years old, Remicade was approved for the treatment of Crohn’s disease. He became one of the first patients to use this revolutionary drug and class of medication. After his first infusion, he immediately felt better and began to gain some weight.
Jarrad’s life before and after his first Remicade infusion were worlds apart. “It is difficult to describe the intense contrast of my life before and after…because words do not seem to justify how much more clearly, I envisioned a better existence for my future self,” he said. For the first time, Jarrad could hope for a future without chronic pain and worry, a future where he could live as a healthy and confident person.
Bumps in the road
Unfortunately, during Jarrad’s second infusion treatment, he experienced an adverse reaction — hives and shortness of breath — and his infusion was immediately cut short. He returned three days later to try treatment again in an ICU. The same reaction occurred, and he learned that he was allergic to Remicade.
Jarrad was devastated that the one and only drug that had ever provided any relief was now no longer an option. Without Remicade, his doctors recommended weekly self-administered injections of Enbrel. The medicine didn’t have any effect and he graduated college weighing 82 pounds.
Access to emerging treatment
A few years after his Remicade reaction, Jarrad met the doctor who would change his life forever. Dr. Lloyd Mayer at Mount Sinai had developed a new protocol to manage infusion reactions during treatment. He wanted Jarrad to try Remicade again and scale up to his original regimen.
At this point, Jarrad was still managing his Crohn’s disease suboptimally, and despite his allergic reactions to Remicade, that brief period following his first infusion was still the best he had ever felt. He could not wait to try it again.
Under Dr. Mayer’s new infusion reaction management protocol and lots of Benadryl and Tylenol, Jarrad successfully advanced through his first six years of Remicade infusions, finally reaching a point where his body tolerated the drug without requiring allergy management.
Radical remission with Remicade
Jarrad was a happy Remicade patient from 2020 – 2021, receiving treatment at a local hospital nearly every eight weeks. Eventually, his doctors determined that his treatment had been so consistent and successful that Jarrad was in a state of radical remission. He only experienced, at most, eight flare ups during all those years.
Over a period of 6,935 days, Jarrad missed less than 10 days of work due to Crohn’s. He was feeling so good on Remicade that for the past five years, apart from regular infusion appointments, he was not even visiting the doctor anymore or consuming any health care services. “I can honestly say that Remicade radically changed my life for the better and helped me enjoy my day-to-day existence again,” Jarrad said.
Unexpected insurance changes
Even though Jarrad was clinically stable on Remicade for 19 years, his health insurance provider decided to disrupt his treatment plan. This has caused stress, uncertainty, and unintended medical consequences that may force him to seek additional treatment.
The first change was switching his treatment site from a hospital to a local ambulatory infusion center (AIC). Although he was disappointed to leave the amazing staff whom he had come to know and trust, he was still able to receive high quality care and continue Remicade treatment.
The real trouble began when his employer’s health insurance provider transitioned, and the new provider forced him to switch to a biosimilar through a cost-saving industry procedure called non-medical switching.
“I was furious to discover with only seven days’ notice that I was being forced into a different treatment plan for reasons unrelated to my health or safety, and there was nothing I could do about it.”
This other drug, Inflectra, is made by a different manufacturer and is also intended to treat Crohn’s disease. Many infusion drugs, called biologics, are incredibly complex and expensive. Biosimilars like Inflectra are “similar” versions of the originator drug (Remicade) but are not considered generic versions since differences between the drugs do exist.
Dramatically different results
Jarrad has had two doses of Inflectra and his iron levels have dropped by half. It has not yet been confirmed that the biosimilar is causing the change in his iron absorption, but he suspects it to be the case. His healthcare provider is now recommending additional iron infusions to stabilize his iron levels.
After 19 years of being perfectly stable on Remicade, he now may be looking at a future that includes two different infusion medications. For infusion patients, the journey to find the right drug can take years. Switching to a biosimilar, while less expensive, did not yield the same results as the original medication Jarrad’s doctor prescribed.
Fighting for treatment
Although Inflectra may be the best drug option for some Crohn’s patients, it is not the best option for Jarrad. Unfortunately, his health insurance provider does not see it that way and will only continue to cover Inflectra.
“Even though I am a well-educated and capable person who has experience pushing back against industry professionals and having tough conversations, the health insurance industry has proven to be a wall I cannot climb alone,” Jarrad said.
Jarrad feels manipulated by his health insurance provider. But he will not give up. He will continue to fight for his treatment, hoping that one day his fight also allows other patients to gain access to the medications that help them stay healthy.