This is a hard one to talk about. It’ll be more of a rant. And I’d like to preface it with all of the obvious about how grateful I am that we were in the economic position we were in when this illness started, how grateful I am that I had a few years of good earnings and decent savings, how grateful I am that my family is healthy and has never been bankrupted by health woes. I am, I truly am, and I think about–probably too much–what must happen to others with a severe chronic illness (that has no knowledgeable doctors and no decent treatment) who are in worse financial shape than we are, without our resources, who are in countries steeped in poverty, refugees fleeing wars… on and on… I do know how lucky I am. But, I’m scared. Mostly because I don’t know what treatment to spend money on and what to reject.
Recently, after 6 months of immunoglobulin infusions, I got a slew of bills that I didn’t anticipate. It turns out that for my itsy bitsy dose of 5 grams each week, I pay $164 after insurance. Out-of-pocket. That’s $655 per month. If I had known this before starting, would I have done it? I don’t know. But now that this is the only treatment that has helped me, how can I stop? And I’m in this tricky spot. I have private health insurance because I was too scared Medicare wouldn’t cover these treatments (also because Medicare won’t cover acupuncture, nutritionists or physical/myofascial/craniosacral/massage therapy — some of the only things that have made a difference in my pain levels). After being told IVIG was not an option by so many doctors, knowing that I didn’t have a history of bacterial infections and a vaccine challenge is usually required for approval, and having Coram (the infusion service) tell me that Medicare hardly ever covers treatment, I was just too scared to give up the private health insurance that had already approved my treatment for the whole year. Of course, I have since heard from others that Medicare covers their IVIG or SCIG at 100%, but … how could I risk changing coverage now when my IgG levels have come up and that alone might disqualify me from continued treatment? I’ll have to revisit this next January when I’m eligible for Medicare enrollment again, but, if I’m still improving with my infusions, I don’t know how I’d take that leap of faith.
An aside for those in other countries or for those that don’t know this fucked up aspect of our healthcare system here in the U.S.: Medicare (government health coverage) isn’t free. You pay each month just as you do with private health insurance. It’s usually cheaper, but not always. It can range from $105-$771 a month, depending on your situation (the higher end is reserved for people who have not worked enough in their lifetimes to qualify. So, if you are struck down with a chronic illness as a young adult and you haven’t worked the requisite 30 quarters in a tax-paying job, you’re not married and you undoubtedly have little savings, then you get to pay the highest premium for our national health coverage– oh, but only if you’re lucky enough to be granted full disability, which very few ME/CFS/Lyme sufferers are). And don’t think that Medicare actually covers your healthcare in full, though. You will still have a deductible each year and co-insurance (the patient pays 20%, typically), you’re prescription medications aren’t paid for unless you get extra coverage and hospital stays can still leave you in horrendous debt. You can stay in a hospital for a few months for the low, low price of $1,260 (although skilled nursing facilities will be more because that price doesn’t cover people to care for you), but let’s take a pretty terrible example: 150 days in the hospital. In 2015, that would have cost you $47,565 out-of-pocket. If you had to stay any longer, all additional costs are your problem. The government washes its hands of you. But wait, there’s more! If you choose not to enroll in Medicare when you become eligible, your monthly payment when you do enroll will be higher–forever–usually 10% higher for each year you could have signed up but didn’t. In my case, if I’m covered by Medicare next year, I will be paying an extra $300/year because I didn’t enroll when I first became eligible. If I wait until 2018, I’ll pay a penalty of at least $440 that year, plus more each year as the premiums continue to rise over my lifetime. Lovely.
SO… Last month I finished up weeks of financial slog for our 2015 taxes and was happy to see our (and by our, I mean my because my husband’s medical expenses are only about a quarter of our total and that is solely health insurance premiums because he never needs a doctor, knock on wood, toba toba) out-of-pocket medical costs had come down slightly.
That doesn’t allay the fear, however. After utilities (sewer, water, garbage, recycling, gas, electricity) and mortgage payments, we’re left with about $20K a year to live on and medical expenses have been almost $20K a year since I got sick. That means most everything else–food, clothes, toiletries, dogs, phone, internet, gas for cars– comes out of our savings. I’m trying to be healthier, place fewer burdens on my system and subdue my chemical sensitivities by eating organic food, pastured meat and buying less toxic products. All of these things are more expensive. For the last year and a half, I’ve been paying $200/month for compounded medications instead of the cheap, generic, filler-filled ones. It hardly costs anything to get sick, but the system is rigged to bankrupt those that are.
I feel very fortunate that we had saved money before this happened, but it will run out eventually and I don’t want to make all the wrong decisions now because I’m frozen in fear of the future. Our day-to-day living is all-encompassing, so time slips by in survival mode and the big decisions never get discussed. I’m happy that we didn’t sell the house when I first got sick because we’re finally not under water and it might actually be worth what we owe again. But when do we sell? And do I switch back to generic meds? Do I stop supplements (around $100/month)? Do I stop seeing my doctor who doesn’t take health insurance? Do I not try human growth hormone or hyperbaric oxygen or nutritional IVs? Do I stop my immunoglobulin infusions?? Last year, I thought a time would come when we just moved somewhere very small and affordable, maybe a foreign country, and I stopped all medical visits and we tried to exist on pittance and make our money last as long as possible… But now that I’ve found a treatment that helps my functioning, I have renewed hope. Maybe I’ll be able to earn a living again if I keep making progress. How can I give up on that? Or should I accept the fact that this is as good as it’s going to get, income-wise? My husband will get older, he’ll be able to work his manual-labour job less and less and I won’t ever recover to the point of being able to hold a job… I think that’s the reality. I know a lot of people with this illness and many have made improvements, but I’m not sure if I know any that have gone back to full-time work.
So, we beat on, boats against the current, cut costs where we can, shop the deals online, grow some veggies, sell some stuff, and pray that in ten years time, the tides have changed for the better.
Big hugs. Worrying about money is so stressful. I can’t even get my head around your bonkers, unfair and complicated health-care system x
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I’m only liking this post to show I’m continuing to think about you… money worries are not needed by anyone, especially by those of us sick. Wishing you the best of choices going forward.. xx
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Wow, so many things about our healthcare system that are so backwards. Those costs are impossible, and I can only imagine the amount of time and energy you spend taxing your brain spinning the numbers. Hugs.
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Health care costs in this country are ridiculous. I still don’t understand why my insurance won’t pay for a $125 SIBO breath test through an ND, but will pay for most of a $750 breath test through a GI…both with the exact same results?! Or why the first GI breath test was all covered, but my next test, I owed over $200 – which is more than the test through the ND?! (I’m obviously ranting about my own health care costs, but it’s a great example of how f*&^^ed up everything is.) I still struggle with health issues that an MD, GI and even functional doctor can’t get to the bottom of…but insurance won’t pay for anything else. They won’t pay to get to the root of the problem, but they will pay for prescriptions to help the side effects. WHAT THE HECK, AMERICA?! I’m glad you found something that works…but I am so sorry that it costs so much every month 😦 Big hugs!
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It seems so unfair that that managing illness is another full time job. The learning and skills you all acquire just tryng to stay alive, could run the world.
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Ughhhh, let’s move back to Europe!! Or let’s elect Bernie😍
I have to admit, to an outsider, the American health care system seems monstrously confusing…
We, too, have to be enrolled in MSP (healthcare is paid for by the Cdn gov’t, but administered by the provinces), But the MSP premium is based on your income- not how long you’ve worked. And I think the highest is under $400.00. Per year. You pay it whether you haven’t touched the healthcare system, or live in it. We also have Pharmanet- prescription meds are only covered after a deductible. Again, based on your income. (Of course, if you haven’t filed your taxes….they put it at the highest rate of $10k. If I’d done my paperwork- it’d be about $500.00. Desperately hoping we can go retroactive…. ).
Basing your deductible on how long you’ve worked. Very odd. It really doesn’t make any sense. Pensions here are based on years you’ve worked (including a childcare provision if you were working in the home). That’s logical. Basing my healthcare on that? Don’t get sick when u r 18…
As well, there is no choice involved- well, actually, maybe more. Nobody has ever told me I can’t see Dr X because he’s not in my insurance group. You have to get MSP, anything on top of that (many people have additional insurance that will cover dental, orthodontic, massage, etc. It is very often provided by employers in medium to large companies). Those coverages are very different from policy to policy.
I totally understand the ‘survival mode’. You don’t have the luxury to make thoughtful, considered, decisions. I’m paying $100 2 times a week on cab fares- to get to my IV appointments. The IV can be anywhere from $30 to $130 depending on what’s in it. I just found out that if you are disabled, unable to drive, unable to take public transit or HandiDart (The mini-bus that does door-to-door for people with disabilities), then you can get something called ‘taxi saver’ coupons. Trip is 50% of the full fare- gov’t picks up the rest. HOLY SMOKES! How did I not know this? I sometimes think I should call up a disabilities advocate- find out what else is out there.
My husband and I also do the ‘it’s only money’ decisions sometimes- going to Minneapolis meant that we can’t replace our rotting front deck. Oh well. It was worth every penny.
Maybe there is someone, like a social worker, who can tap you into other services and funding sources. Don’t be afraid to ask- I know we have been, and it’s not the way to go.
It’s a bit different but I have a family member (trained by an infusion nurse) do my infusions. It saves money. But that’s just for saline and vitamins, not as complex as ivig.
Wait, really? Because the nurse is here literally for 10 minutes. I prep everything, she puts the needle in my arm, has me sign her tablet and leaves. I do the IgG myself after she’s gone and remove the catheter and infusion needles myself, of course. I’ve often thought I could probably stick the needle in my vein myself. My husband… I don’t know… He’s not good with those sort of things… But this is great to know, thank you!
Yea. Or you could leave the IV in for 3-7 days. I usually leave mine for 5 days or so until it gets irritating. Have you tried a PICC or port? I had a bad experience with the former.
I won’t do a PICC or port and the IV is irritating after about 15 minutes, so, definitely not keeping it in for days! 😉
You’re right. If you don’t need daily infusions it doesn’t make sense.
“Need” is what’s hard for me to ascertain. Maybe I do need them daily and don’t know it? So much of this is blind luck… Or not.
True. True. And you may not fully know until you try them everyday. I was desperate and it page off, but everyone is not the same.
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I’ve also spent tens of thousands over a few years time and so this last year I decided to take a break from doctors, meds, tests, and treatments as much as possible. They always make me feel worse. I’ve really lost faith in them. I had a better year without the adverse side effects of meds but I am still not functioning very well at all. Suffering less, yes. Now I am at a crossroads not knowing how to proceed. I’ve read several of your posts now and we are living the same life.
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