I have always been financially independent, meaning I supported myself. I worked in nonprofit for my entire career, so I never earned a lot of money. Still, I lived frugally and made it work, while managing to save money. Then I became too sick to work. Suddenly, money became a big problem.
Social security, fuel assistance, and food stamps helped, but they weren’t enough. I was pulling money out of savings every month. Thankfully I had savings, and enough that I wasn’t on the verge of ruin, but not enough to last me indefinitely. I tried to work multiple times. Each time I increased my hours, I got sicker. Some weeks I could manage 5 hours of work. Some weeks 10 hours. But if I tried to work 10 hours per week for two weeks in a row, it was a disaster. Even 5 hours per week wasn’t sustainable over time.
Then last year, I got Section 8! (For those outside the U.S., Section 8 is a housing subsidy. These days, the wait list to get Section 8 can be 10 years or more, and the restrictions for using it are very strict. With this type of Section 8, you pay no more than 1/3 of your income on rent, and the government covers the rest.) I was in shock. I thought I would be on the waiting list for several more years, but out of the blue, I reached the top of the list. Finally, I could cover all of my basic expenses with my benefits! I would still have to take money out of savings if I wanted to go to the theater, eat dinner with friends, buy clothes, or pay for car repairs, but this was still a huge improvement. It lasted about a minute.
Less than two months later, I got kicked off of food stamps. They said I earned $20 per month over the limit. I had no idea where that number came from, because I wasn’t close to the limit. So I did the paperwork and sent it in. I got food stamps back, but the same month I started a new prescription. It has to be compounded, as probably all of my medications will have to be from now on. That’s the only way to get this particular medication without any corn or gluten in it, which is a medical necessity for me.
Unfortunately, Medicare doesn’t care that it’s a medical necessity; they refuse to cover compounds. At $150 per month, this is obviously not in my budget. I appeal and was denied. I found an amazing patient advocacy group that helped me with a second appeal at no cost. My patient advocate helped me in many ways and this time my appeal included a 1000 word letter about why I need this medication and how it helps me, a more thorough letter from my doctor, and more of my own medical records.
And I was denied. Again. I can continue to appeal but it won’t help. Compound medications by their very nature are not FDA approved, and Medicare won’t cover anything that isn’t FDA approved. So I’m stuck.
Again, the good news is that I can afford this. I have savings. The bad news is that savings only goes so far. And every time I need to add a new prescription (I will probably have another in the next month or so) it will most likely need to be compounded. The costs might vary, but it won’t be cheap.
I take a lot of supplements and visit a lot of medical professionals. I spend about $600 on healthcare despite having great insurance. I take only ONE prescription medication and yet my insurance won’t cover it, so now I need to increase my medical spending by 25% to cover this additional $150 per month.
For a few weeks I could cover my expenses without dipping into savings or having to ask my parents for money. It was glorious. If only Medicare worked the way it should, I would still be in that position. Instead, I am watching my savings slowly go down month after month and it’s terrifying. But I need this medication to live.
Now please excuse me, I need to go call in a refill of my medication.
That is so outrageous! It’s not your fault you can’t have gluten etc. It’s just plain wrong.
I know people in the U.K. moan about the NHS but we have it really good. We might have a longer wait to see someone but it’s free. I have lots of medication and pay £115 a year for a prepaid prescription and that’s it. I go to the hospital for my biologic infusions and that’s free. We do pay national insurance and taxes which comes out of our wages every month and that contributes to everything. The amount varies on how much you earn.
I so wish I could help in some way it just seems so unfair.
Big hugs xx
Thank you for your sympathies, Lorna. It’s such a strange system. My iron infusions are covered, but they won’t cover anything that isn’t approved but the FDA, our government regulatory agency. That makes sense, but compound medications can’t be FDA-approved, which means none of them will ever be covered. That’s a really big gap in the system. There are so many gaps 😦