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 - as I do - then there are certainly options. But the health insurance doesn't pay for them at all. For example, the conversion of my newly purchased Audi S4 to hand throttle, so that I can get to the office and to customers at all. Min platform lift in the staircase, which cost a mere €34,000. A full carbon wheelchair for €8,000, which I can lift with great difficulty from the passenger seat onto the road. All things that the AOK does not feel responsible for. So the question is, how does the "normal" ALS patient pay for this?
I have calculated for myself what I actually spend every month, just for my care 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 seriously wonder how the "normal" ALS patient is supposed to pay for such costs. That's not possible at all, don't tell me.