After much prodding, Jan explained what she needs:
My story begins in the early 1960s, as an infant, whose legs looked strange, and who, at the age most babies start toddling, couldn’t quite pull herself up or stand steady. I fell a lot, and had a very strange way of moving around. Fast forward to 18 months, and after many, many doctors visits, an x-ray showed the culprit – severe bilateral congenital hip dysplasia (BCHD,) with the right hip being completely dislocated.
If you are wondering what BCHD is, this term describes a multitude of conditions, some of which are very mild and may not even be noticed until adulthood, while in other cases, the deformities are so severe that the child is unable to weight-bear or walk without surgical intervention. In some cases, the femoral head is mis-shaped or at the wrong angle to fit into the socket (the acetabulum.) In other cases, the acetabulum itself is just too shallow to hold the “ball” (femoral head) or it is in completely the wrong location on the pelvis (too high or too low.) Sometimes, both the femoral head and the acetabulum are deformed or otherwise unusable. Sometimes, the pelvis itself is twisted or deformed. In my case, you could simply check the box that says “all of the above.”
For the next two and a half years, I had surgery after surgery – a total of 12 in all, and for 7 of these surgeries, I was placed in a body cast for 12 weeks to stabilize my pelvis during recovery, which means I spent over a year and a half as a preschooler in body casts that wouldn’t allow me to sit, stand, or walk.
At age 4 and a half, they had done all they could do. I could walk very steadily and start school with the other children, although I still had that odd wobbling limp that is called Trendelenburg gait.
These surgeries rob you of synovial fluid in your joint spaces. As expected, by my teenage years, I developed severe osteoarthritis in my hips and knees. By age 25, I could barely walk, and underwent long-term prednisone treatment (which isn’t done anymore) and frequent inter-joint cortisone injections. By my 30s, it was time for two total hip replacements. By my 40s, I was I needed an assistive device to get around, and by my 50s, my original hip replacements began to wear-out and fail. I’m currently scheduled to have a hip revision next summer.
At age 56, I had a medical crisis that left me unable to work and completely homebound. It took about 7 months to get a diagnosis. I have psoriatic arthritis (PsA.) My kidneys are also failing (most likely from the long-term prednisone treatments in my 20s.) It was a devastating diagnosis.
The damage from PsA is irreversible. The treatments include non-steroidal anti-inflammatory drugs (NSAIDs,) disease-modifying anti-rheumatic drugs (DMARDs,) and biologics. Unfortunately, people with kidney damage cannot take any NSAIDs or DMARDs, leaving biologics as my only choice.
PsA never resolves itself on its own. It never just “goes away.” It requires aggressive treatment. While there is no cure, some treatments may slow it down, and maybe even put it into remission for a while.
For me, the only option is one of over a dozen biologics. Biologics are, however, insanely expensive. Even with good insurance, the regular deductibles and co-pays often do not apply, making them very costly to even the best-insured patient.
My treatments with biologics cost over $125,000 per year. Even with drug company co-pay assistance, and infusion grants from the compassionate care act, the costs are mind-boggling. Biologics are exempt for co-pay restrictions, which means I am responsible for 25% of the cost, with no out-of-pocket maximum, which is around $31,250. In addition to that, I still have to self-pay my insurance premiums, and pay my co-pays for doctors’ visits. It all adds up very quickly. These amounts far exceed my disability income.
To add to this, my right hip replacement (which is 25 years old) has failed, and they need to go in, take it out, and replace part of it. This is called a hip revision, and it is actually more difficult than my initial hip replacements. I will also need multiple bone grafts in order for this surgery to be successful. After insurance, my share is estimated to be around $40,000.
As a teacher, I never made a great deal of money. My reward was watching my students thrive and succeed. My whole life, I never lived beyond my means, and always put money away for a rainy day. Right now, it isn’t just raining, it isn’t just pouring – it is a monsoon! I’ve obtained co-pay assistance, treatment grants, insurance subsidies, and disability, but it just isn’t enough. I somehow have to hold on for 13 more months, until I am eligible for Medicare.
- Jody Sawicki
- Andrea Scaletta
- G Dozier
Organizer and beneficiary
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