$20,000 dollars per family for mostly (shit) coverage how is that desirable over single payer ugh
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But so much PROFIT.
Ahem. Anyways. I don’t have anything actually useful to say, just plenty of rage. I’m grateful for the ACA and also still really upset over our healthcare system. It is preventing me from making a bunch of life and career choices I’d like to make otherwise.
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But the free market and the 1/6th of our economy and the… I dunno, shareholders? Even I’m running out of excuses for anything that remotely looks like what we have now. It’s horrific that healthcare is that big a chunk of the GDP. I’ve been in the gov’t and I don’t trust it to run a hot dog stand, but a new system is needed. If single payer works the way it should, I’m 100% for it.
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Very happy to share, but I don’t think I’m on a biological unless I am woefully ignorant about my own drug regime (possible!). I’m on plaquenil / hydroxychloroquine, which is an antimalarial, for lupus (SLE). I felt like I was on amphetamines for the first week; since then it’s had no side effects. I do have to get invasive and inconvenient eye tests done every year to check it’s not damaging my vision, but the risks are low and the plan is they detect it early enough to “only” mean I have to go off my drugs.
Plaquenil has improved my quality of life considerably, as have my prescription anti-inflammatory (Celebrex) and the SNRI that is specifically good for pain and fatigue (it’s apparently rubbish at treating depression, and certainly does nothing for my anxiety, but oh lordy it’s made my life easier on the fatigue front).
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Thanks @anomalily and @HaH.
We’ll have to see if the escalation/step therapy applies. There is only one other potential long term treatment and its even more costly.
Biologics and insurance worry
I am coming from a place of fear right now, because for so many years minimization and partially effective treatment of individual of symptoms and corticosteriods during flair ups were the only option and now there is hope, but if insurance doesn’t cover it it will be near unobtainable. And really if we can’t a least try this, having it dangling there almost worse. The background level of bad has been progressively getting worse and has all ready meant a career change. Add on unemployment for 4 months causing an insurance switch and now an emergency medical appointment with a new doc on the first week of the spouse’s new temporary job (so right now this is on my insurance but there is potentially a new switch to a different insurance and another in 6 months) and I am taking the weekend to panic-sort-everything in my head. At least we have three weeks before the drug could be administered. I’m so very glad you were able to switch insurance plans and stay on it, that is one of the fears since spouse doesn’t stay at jobs very long.
On a less frantic note, I am so grateful to hear the co-pay card is so easy and will potentially count to oop maximums, though with my plan pharmacy is it’s own thing. It looks like the sign up for that may be the easiest thing of all.
Administration of your drug sounds like a pain. Sounds like spouse’s would also be self administered since is it a subcutaneous injection. Transport of drug will be a wait and see and we’ll be prepared for a different pharmacy.
As for being a miracle drug, that made me tear up because if this one is that effective it would be life changing. The reviews on the effectiveness of this one are so positive and the drug is only 2 year old, that I was concerned it was all paid endorsements. The non-positive reviews had side effects that were pretty intimidating including pink eye and permanent reduction of vision with eye damage. Also hair loss, but I’d sacrifice my hair in addition if this works.
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That is so sad @Gilly. I found myself wondering if it would be possible to sue the drug companies or legislators to get these things overturned. The worst part of this is that likely everything they are doing is legal.
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Sweeps in to say: THERE IS SOMETHING YOU CAN DO. A number of activists (myself included) have been working to get Mandatory Step Therapy banned at the federal level. A house bill has already been introduced and THIS WEEK a senate bill was introduced. You can write your senator, or your rep, and ask them to co-sponsor the bill.
Learn more here and send a message to your congresscritter: https://www.arthritis.org/advocate/action-center/?vvsrc=%2Fcampaigns%2F65310%2Frespond
@Gilly I wish your spouse much luck. It’s definitely harder with newer drugs but I really, really hope you can get it approved. If you have a deep insurance dive that needs to be done, or any questions along the way, next month on OMD is health care month, so I’m happy to answer any health care questions! If hair loss is a worry, usually you can ask for a folic acid scrip as a OTC to take along with it (it’s a big risk with many drugs I’ve been on, and I haven’t lost hair any of the times I’ve been on it, but I have without it.)
"More about drug administration for @Gilly - cw: shots
Also I will say, admin of my drug is super easy! It’s literally less than 30 seconds a week, subcutaneous injections are super easy as you don’t need to find a vein like normal injections and while it’s a bit painful, I use the injection as an opportunity to think about how grateful I am for what this drug gives me. (Sounds woo, but it’s totally what I do, it’s probably my only 30 seconds of meditation a week.)
For the past 3 years, it’s been approved by the FDA to be out of refrigeration (but not in a very large temperature range) for up to 14 days, though it can’t be re-refrigerated after being taken out. This has covered 90% of my trips, though when I was in London for a month this August, I did travel with it on ice in a tiny little travel container, and I got the flight attendants to store it in the fridge on board (since icepacks won’t last 10 hours of travel).
You can see the little travel container that holds an ice pack and 4 weeks of shots (plus alcohol swabs) in this pic - it’s the little blue thing. Very easy!
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Message sent. Step therapy is so shitty.
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Thank you for the reminder. I’m going to keep this tab open till office hours and call in. I’ll edit once it’s done.
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Done!
Though this is just the tip of the iceberg. After reading about price gouging by hospitals, doctors and pharmaceuticals, I’m on the chapter about medical devices. Many companies are now getting their devices approved with minimal testing by claiming it is very simlar to an existing product. So some of these things are being implanted in people with no testing in animals for example, and no informed consent that this device is effectively experimental. Some things have gone horribly wrong, and the device manufacturers are not standing by their products by covering costs to make things right. So patients are on the hook for the costs of problems caused by the device, and to ultimately fix the problem, if it can be fixed.
It was bad enough to read about how medical care can cause major financial problems, but to read that there are common practices (like step therapy) that aren’t even SAFE… I can’t even. Are you involved in any other groups addressing the larger problems?
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