Lamis suffers from the rare genetic defect Ehlers-Danlos syndrome – and is fighting with her health insurance company for the chance for a more self-determined life. Now your friend has started an appeal for donations for an electric wheelchair.
When you have a rare incurable disease, everyday life is characterized by many challenges. It is all the more important that those affected get the support they need – from their personal environment, but also from doctors and health insurance companies. But the help you need is not always easy to get from the latter. Lamis knows that too well: The 27-year-old suffers from a rare genetic defect in connective tissue known as Ehlers-Danlos syndrome, which can lead to a variety of complaints. In order to be able to continue her life as self-determined as possible, Lamis is currently fighting with her health insurance company, TK, to pay for a special electric wheelchair.
"There are good moments, there are bad moments"
"There are several sub-types of my illness, I have the most common. As a result, for example, I have circulatory problems, permanent pain and fatigue, i.e. chronic tiredness. This tiredness can really lead to bedridden. So that means I'm not just tired, but Sometimes I can't move and can't think clearly, "said Lamis in an interview.
MDK doubts the need for the electric wheelchair
But TK has so far refused to cover the costs of around 40,000 euros for the new electric wheelchair, which was applied for in January. The reason: The health insurance company relies on an opinion from the Medical Service of Health Insurance (MDK), which sees no need for the model requested – the active wheelchair that Lamis currently has is sufficient. A lot of time passed before this rejection, the report was only available in mid-May.
The pain is just always there.
According to Lamis, the MDK had previously requested various medical certificates and statements several times in which it was medically justified why Lamis needed exactly this power wheelchair. She submitted this. However, as she says, all these documents were not taken into account in the report. Instead, it only refers to a report from one of her rehab stays, during which she felt a little better. "I could lie down at any time, the distances were not far," said Lamis. In addition, her friend Bernhard was with her the whole time as a companion. "That's why it worked. And the MDK took this rehab report and said that I actually didn't need an electric wheelchair at all. The reports or medical statements that I had otherwise submitted were not even mentioned."
What Lamis does not understand to this day: TK initially even rejected the MDK's report because it contained too many errors and sent it back for revision. However, the correction was carried out by the same reviewer who wrote the incorrect version in the first place. And he came to the conclusion again that Lamis did not need the requested wheelchair.
The alternative proposal by TK
Lamis lodged an objection to the health insurance company and applied for an urgent procedure in court. But their lawsuit was dismissed – because the case was too complex for an urgent procedure. TK then offered another, cheaper electric wheelchair, provided that Lamis returned her current active wheelchair. That was out of the question for her, because she needs both wheelchairs in everyday life, which is also confirmed by a bilateral opinion from her doctor. The power wheelchair that she should now have lacks a reclining function, which she needs because of her circulatory problems. In addition, Lamis suffers from instability of the cervical spine and requires special damping in their wheelchair, which the model does not have either. This made it clear: The dispute with TK about the assumption of costs would go into the next round.
The opinion of the TK
But what does the health insurance company actually say about the allegations? We asked TK for a statement. Regarding the incorrect opinion of the MDK, the TK writes, among other things, that "the opinion does not fully answer all of our questions. Since the MD report was not inadequate but incomplete, no second expert was called in." All the necessary documents for an assessment were made available to the MDK by the TK.
word agains word
Another moot point: A friend of Lamis, who has the same illness in a similar severity, was given the required electric wheelchair without any problems after presenting the necessary medical certificates. According to TK, this friend, unlike Lamis, was not adequately cared for in the so-called "close proximity to the living area" and was given the power wheelchair. Lamis contradicts some statements in the statement and refers to various telephone calls with TK employees. Unfortunately, this cannot be verified editorially – here there is one statement against one statement.
For me, accepting the disease is less difficult than the struggles around it.
A fundraiser for Lamis
It is clear that the situation is difficult for Lamis to endure. "Mentally too, I was mostly feeling bad because of struggles with health insurances, authorities or other things and not because of the pain or fatigue," said Lamis. The months of fighting with the health insurance company made her symptoms even worse. Her friend Bernhard has therefore started a donation campaign so that the couple can finance the required electric wheelchair themselves. Because in autumn Lamis would like to start studying, which is not possible without the requested model.
Meanwhile, an objection procedure is still running at TK, so there is still a chance that TK will pay the costs. In that case, Lamis and Bernhard would like to use the money raised for further aids to make Lamis' everyday life easier. If you want to help, take a look at the donation campaign at gofundme.com!
Update on 08/12/20
Surprisingly, the Lamis case has moved: she and her boyfriend have now taken out a loan and bought the required electric wheelchair on installments because the procedure has dragged on for months and Lamis' condition has continued to deteriorate. But there is also news from TK: In the meantime, the health insurance company has the same model back in stock. This can happen, for example, if the previous user has new demands on a wheelchair or if he dies.
Suddenly the electric wheelchair is offered
And surprisingly, TK is now ready to make this electric wheelchair available to Lamis directly. The MDK's opinion, because of which the procedure dragged on, suddenly no longer seems to play a role. This suggests the suspicion that TK was simply not ready to take on the costs of 40,000 euros for a new model and played for a while – However, this cannot be checked finally.
A question of cost
However, this change presents Lamis with a new problem: since the electric wheelchair that she bought herself was specially adapted for her, it cannot be easily resold. Therefore, she is now thinking about suing TK for assuming the costsbecause it dragged the proceedings so long. Since she still has to pay off the wheelchair in installments, she and her boyfriend are still looking forward to donations on gofundme.com.