My fight against bureaucratic madness
As if I didn't already have enough with ALS. For years, I've not only been fighting against an incurable disease, but also against a system that makes my life even more difficult. Today is another day when I realise how degrading and inhuman our bureaucracy can be. The medical service (MD) has decided to check whether I really still need to be ventilated. As if I were cheating the health insurance company.
ALS is incurable - and yet my ventilation is being questioned
I have ALS. A disease that is gradually paralysing my body completely. My muscles no longer work, my breathing is taken over by a machine because I can no longer manage on my own. ALS is incurable. Anyone who has even a minimal understanding of this disease knows that. Nevertheless, I am repeatedly treated as if I am a malingerer who is deliberately hooked up to a ventilator in order to fleece the health insurance company.
Today I spent the whole evening fulfilling the requirements of the medical service. Protocols, reports, fß certificates - a jungle of bureaucracy that costs me hours and takes no account of the fact that my time and energy are finite. My urologist was also there to change the catheter. There are days when my care room is full of people who keep me alive and I still don't get to do the things that are really important to me.
IPReG and RiSG: laws that tighten the bureaucratic jungle
It is not uncommon for me to find myself in this cycle of scrutiny and justification. With the introduction of the Intensive Care and Rehabilitation Reinforcement Act (IPReG) and the Framework Directive Act for Structural Healthcare (RiSG), the situation for people like me has become even worse. The IPReG was actually intended to improve the quality of out-of-hospital intensive care. But what sounds good on paper looks different in reality.
Since 2020, the MD has been legally obliged to regularly check whether the requirements for out-of-hospital intensive care are still met. These checks are intended to prevent false incentives - in other words, to prevent people who do not need intensive care from receiving it anyway. But the catch is that this regulation also affects people who, like me, have a terminal illness. For me, this means that I have to submit evidence every few months to prove that I need ventilation. As if ALS could suddenly disappear.
The reality behind the figures
The figures are alarming. According to a study by the German Society for Neurorehabilitation, neurological diseases such as ALS may require permanent ventilation. That should actually be enough to make the constant tests obsolete. But the reality is different. Instead of relying on medically sound diagnoses, the system seems to be focussing on cutting costs.
How much does it actually cost for the MD to carry out such examinations again and again? And how much does it cost in terms of quality of life when seriously ill people like me are forced to justify themselves over and over again?
The never-ending hamster wheel
Today I wrote to my speech therapist Sabrina. I need another report from her to satisfy the MD. The report is one of a jumble of documents that I have to submit: Nursing reports, vital sign logs, suction logs, weaning logs, medication schedules. Every report, every chart, every number is another reminder that I am not a person in the eyes of the system, but a cost centre.
I ask myself: where is the humanity? I am a human being who needs to be ventilated in order to live. I am not a statistic, not a case, not an item on a list. And I am certainly not a potential fraudster.
My life belongs to me - not the health insurance company
I am not naive. I know that our healthcare system is designed for efficiency and cost savings. But where is the limit? It's degrading to have to justify living over and over again. I didn't ask to have ALS. And I'm not going to apologise for still being here - even if it means I'm costing the health insurance company money.
IPReG and RiSG may have good intentions on paper, but in reality they contribute to people like me constantly having to fight. I will continue to fight - for myself, for everyone else affected and for a system that needs more humanity and less bureaucracy.
