I self-carried myself away….

Wow, my fingers feel rusty. It’s been a hot minute since I’ve blogged. I took what I haven’t allowed myself to take in a long time…..a break (sort of).

My health has been horrible over the past three years. In addition to my autoimmune arthritis, I’ve had to deal with grief, depression, pneumonia, multiple bouts of bronchitis, COVID, Rebound COVID, tendonitis, bursitis. To top everything off, my biologic drug stopped working. The stress work combined with illness, non-stop pain, and commuting to manage the needs of a loved one who lives 2 hours away had me running on empty. I could feel my physical and emotional decline and it was suffocating. I decided to practice what I preach and take care of myself. I didn’t work during the summer, well, I did, but I worked remotely with AiArthritis on Community Awareness. I finished my third and final book of my chronic romance series, and I rested. It may sound like a lot, but working from the comfort from my couch is a luxury compared to my daily grind. Unfortunately, I got carried away with my self-care and let the one thing that has helped me cope all the years fall the the wayside….my blog. I started to feel better physically, and I lost my patient voice. Let me explain…

I switched to an infusion biologic drug called Remicade. This was the drug my rheumatologist recommended in 2022, but my insurance rejected it for “cost and safety”. I spent a year on a drug that helped a little bit, but being on Remicaid has been life altering. I started off my 32nd school year being able to walk mostly pain free. Let me say that again…

Mostly Pain FREE

After living with severe pain since I was fourteen years old, it was an adjustment to deal with minor pain. Things like doing laundry and taking a shower still caused severe fatigue, but it is fatigue without pain. It was truly a shock to my system. I cried one afternoon when I was able to walk my dog around the block. It felt too good to be true…and in a way it was. Being on Remicade lowers my ability to fight infection and I ended up with a bad sinus infection. Due to taking antibiotics, I had to delay my infusion by two weeks. Two agonizingly painful weeks.

The good thing is that after this two weeks of hell, I realize that Remicade is truly a miracle drug for me. The bad thing, is any interruption to my infusion schedule will painful. I’m lucky to be able to have private insurance that covers Remicade, but as I near retirement, I am fully aware that the cost may be prohibitive once I am not privately insured. My body craves that I retire, but my brain knows I’m not financially able to do so right now.

Last week, I was granted the opportunity to speak at a Medicare Drug Price Negotiation Program Patient-Focused Listening Sessions. In August of 2022, President Biden passed the Inflation Reduction Act. According to the Centers for Medicare and Medicaid Services (CMS): “The Inflation Reduction Act provides meaningful financial relief for millions of people with Medicare by improving access to affordable treatments and strengthening the Medicare Program both now and in the long-run. The new drug law makes improvements to Medicare that will expand benefits, lower drug costs, keep prescription drug premiums stable, and improve the strength of the Medicare program.”

The drug Enbrel, which is used to treat many people living with autoimmune and auto inflammatory arthritis diseases was one of ten medications chosen for a public listening session. CMS posted the following: “The Centers for Medicare & Medicaid Services (CMS) will host a series of patient-focused Listening Sessions this fall as part of the Medicare Drug Price Negotiation Program. The virtual public Listening Sessions will provide an opportunity for patients, beneficiaries, caregivers, consumer and patient organizations, and other interested parties to share input relevant to drugs selected for the first round of negotiations.” (read full document here: CMS/ENBREL)

I was honored to be one of the 16 people allowed to speak and to be a part of the process to lower drug costs. I currently have insurance through my employer and as a result of that insurance, I am eligible for a copay program through Janssen. Once on medicare, I will no longer be eligible for the copay program and would struggle to pay the out of pocket expenses to remain on my biologic drug.