I was diagnosed with RA a few years ago and have finally started biologics over the past year (after trying other, less effective meds first). I started on Enbrel and it helped a lot but wore off a few days between the next dose so I was only good for about half the week. So now I’m on Remicade which lasts longer (although this also starts to gradually wear off long before the next infusion, so I’m still up and down).
Even though I am not even close to being at the activity level I used to be, these medicines have significantly reduced my pain and now I am able to at least do most normal daily activities and am able to babysit my grandson for a couple hours at a time. A year ago I would not have been able to do that, and was at a pain level that kept me from sleeping.
I am on SSDI and have Medicare plus an income-based Medicaid program that covers deductibles, premiums and copays for the medications that I would otherwise not be able to afford. I know that there are many people on Medicare who cannot get biologics because they don;t qualify for the help. It is horrible that they fall through the cracks and that not everyone gets the “good” medicines.
So here is my dilemma.
I was already on SSDI for other conditions long before this RA diagnosis. Those health issues would come and go and various levels, like many illnesses do. There were times when I had part time jobs and other times when I would lose those jobs and then be unemployed for awhile until I recovered enough to try again.. and again.. etc.
I’m sure you get the picture.
For a long time I only had Medicare part A and went back and forth between being insured by the “Medicaid for Employed Adults with Disabilities” program during times I was working… and then being uninsured (except for part A which covers hospital only).
So in those in between times I went to clinics with sliding scale fees, got cheap medications or relied on samples. Or just went without and did my best.
“Obamacare” came along and that changed some things including Medicaid expansion. So I eventually got to a place when I could have ongoing reliable healthcare and medication coverage.
Very long story cut shorter….
I recently got a letter from Social Security saying I need to go back to work using the ticket to work program (which I am familiar with as I’ve used it before when I worked on and off in the past).
It has been a few years since I’ve worked at all, because of the RA on top of everything else.
They want me to either return to my work goals or I risk being evaluated by one of “their” doctors (not mine) to decide if I should still receive disability payments or not.
Apparently this is happening more often lately and I wonder if it is just a coincidence or if it has to do with program cuts and the insistance that we need to “weed out the fakers” and make it more difficult to get (or keep) benefits.
I am afraid of losing the assistance that helps me with the cost of medications and deductibles, copays, etc.
Yes, I could keep Medicare … and also pay for the part B. I could also sign back up for the Medicaid for disabled program. Or find an employer willing to hire me for only a few hours a week so that I don’t go over the income limit for the program currently assisting me. The one that covers my biologics.
So the catch-22 is that if I go back to earning even a small income, I could end up not being able to afford these medications. I would end up back on the ones that were way less effective… which means I would ultimately lose jobs again and keep repeating the same cycle.
I have been through the horrid experience of being suddenly yanked off medications. And having insurance coverage change or ending up with gaps in it.
That is a big reason why I had decided to just keep things the way they are. That is in addition to the fact that I am not anywhere near ready to go back to a job.
I am just starting to catch up on about 2 years of housework and other projects that piled up during the time I could hardly move because the pain and fatigue was too intense. Even walking a short distance was agonizing. I used to stand on cushions to cook and wash dishes for a few minutes at a time before having to sit down again.
Now I can (on most days) actually cook a meal or wash a sink of dishes without it totally wrecking me after. I can take a short walk. And for short amounts of time I can lift and carry my grandson! I can actually sleep most nights without crying in pain every time I try to roll over. It has been wonderful to get some of my life back.
Going back on the pills/ meds that I tried for a couple of years before getting these biologics would mean losing the progress I’ve made. And right now there is nobody who can assure me that won;t happen. I have an appointment for orientation with Vocational Rehabilitation in a few weeks from now, but they can’t answer my questions in the meantime.
Another issue that complicates things is that technically I’m not even on disability for RA. it is for other issues which, incidentally, have improved since I stopped working.
This might sound paranoid but I am very worried that I will be one of the people who ends up kicked off disability if my number gets picked to be evaluated by a random doctor while I happen to be not in a bad flare. I have read too many accounts of people who sent in reams of paperwork from their regular doctors which state the level of impairment and explain why working is not good for that patient.. only for it to be ignored. My understanding is that this is not as simple as just getting a doctor’s note. If the doctor and/or lawyer (who are hired by the government to turn down as many applicants as possible) sees me and decides I’m fit to work then I will have a rough road ahead, to say the least.
So my only option is to proceed with vocational rehab and probably end up back in a retail job if I can’t find a “desk job” (those are hard to find anymore) on the bus route or walking distance. I also don;t drive because of a brain injury. That limits the amount and types of jobs I can get to.
I realize that all of these issues are very common and I know I’m far from being the only one. I wish that the people who don’t struggle with these things could understand, instead of helping to make cuts to programs that help. And those who want everyone to work yet could care less about whether or not they can afford healthcare.