Dear Diary,
Once again, I've had a lot of expenses for my care and treatments in the last few weeks. It feels like some kind of co-payment bill flutters into my house almost every day. This always amazes my carers and therapists. There don't seem to be many ALS patients with the highest care level and 90% severe disability who are not exempt from co-payments. But just like my ridiculous disability insurance (BU), my health insurance also says that I earn too much.
I earn too much.
I find this formulation somewhat unfortunate. Can you earn too much as an ALS patient?
I don't think so.
If you want to continue living your life with ALS - like I do - then there are definitely options. But the health insurance doesn't pay for them at all. For example, converting my Audi S4, which I had just bought, to hand throttle so that I could get to the office and to customers. Min platform lift in the stairwell, which cost a mere €34,000. A full carbon wheelchair for €8,000, which I can lift from the passenger seat onto the road by myself with great effort. These are all things that the AOK doesn't feel responsible for. Hence the question, how does the „normal“ ALS patient pay for this?
I did an estimate for myself of what I actually spend every month, just on my skincare and treatments. The result, phew, February was particularly heavy...
| Date | Receiver | Demand | Costs |
|---|---|---|---|
| 15.02.2023 | Health insurance | Health insurance (AN share) | 806,98 € |
| 15.02.2023 | Health insurance | Health insurance (AG share) | 806,98 € |
| 15.02.2023 | Care insurance | Long-term care insurance (AN share) | 169,58 € |
| 15.02.2023 | Care insurance | Long-term care insurance (AN share) | 169,58 € |
| 16.02.2023 | Amazon | Incontinence pads | 36,95 € |
| 16.02.2023 | Nursing service | Costs for Support in the hospital | 6.768,00 € |
| 27.02.2023 | Pharmacy | Co-payment medicines | 24,96 € |
| 01.03.2023 | Pharmacy | Co-payment medicines | 21,95 € |
| 06.03.2023 | Telephone company | Telephone charges for carers landline | 26,00 € |
| 06.03.2023 | Pharmacy | Co-payment medicines | 10,00 € |
| 13.03.2023 | Care insurance | Co-payment (prescription) Home nursing | 10,00 € |
| 13.03.2023 | Care insurance | Co-payment (benefit) Home nursing | 2.848,20'€ |
| 15.03.2023 | Health insurance | Health insurance (AN share) | 806,98 € |
| 15.03.2023 | Health insurance | Health insurance (AG share) | 806,98 € |
| 15.03.2023 | Care insurance | Long-term care insurance (AN share) | 169,58 € |
| 15.03.2023 | Care insurance | Long-term care insurance (AG share) | 169,58 € |
| 17.03.2023 | Amazon | Waste bags for care products | 35,05 € |
| 17.03.2023 | Suppliers | Co-payment for aids | 66,87 € |
| 17.03.2023 | Suppliers | Co-payment for aids | 33,06 € |
| 17.03.2023 | Suppliers | Co-payment for aids | 7,05 € |
| 19.03.2023 | Online pharmacy | Aqua for humidifier | 149,50 € |
| 19.03.2023 | Amazon | Disinfectant for records | 32,99 € |
| 19.03.2023 | Amazon | Tork roller towels | 82,85 |
| 20.03.2023 | Pharmacy | Co-payment medicines | 54,02 € |
| 23.03.2023 | Amazon | Sensor strips for roll towels | 352,94 € |
| 24.03.2023 | Amazon | Mouth rinse against Bleeding gums | 6,11 € |
| 27.03.2023 | Amazon | Wound compresses | 30,50 € |
| 29.03.2023 | Pharmacy | Co-payment medicines | 10,00 € |
| 29.03.2023 | Pharmacy | Co-payment medicines | 10,00 € |
| 29.03.2023 | Pharmacy | Co-payment medicines | 9,99 € |
| 31.03.2023 | Physiotherapist | Recipe fee | 87,28 € |
| Total | ? |
So I earn too much? As I said, I disagree. I'm seriously wondering how the „normal“ ALS patient is supposed to pay for such costs. That doesn't work at all, don't tell me anything.
