Despite multiple doctors writing diagnoses and prescriptions, so far, I have been turned down for medical cannabis coverage twice by my health insurer and the Medischinische Dienst in Hessen. This is not OK.
I know at this point; I am far from the “exception.” According to statistics, I fall within the approximately one-third of German cannabis patients (although I suspect this group of people is much larger) whose illness has been dismissed by both authorities and German insurers as “insignificant” and not meeting the medical standards of care for cannabis coverage.
This is not the language or the intent of the 2017 law approving medical cannabis treatment. Namely, that any practitioner could write a prescription for cannabis, and that furthermore, barring “exceptional cases,” insurers and the MD could NOT just turn down applications.
However, this is why I am speaking out as Germany’s politicians try to grapple with the realities of the current cannabis situation and try to figure out how to take the next step.
The current medical law is not working. And furthermore, patients who get stuck in this situation, are even prosecuted further if they are caught by the police with any kind of cannabis that they cannot prove they sourced legally.
That is a constitutional violation and abrogation of rights that so far has been widely ignored.
And it’s not going to get much better with what is being proposed in terms of “reform.”
I AM Sick
The fact that I would be caught in this circle of hell is appalling. There is no excuse for the way I have been treated.
In 2007, as I turned 40, and while living in New York City, the left side of my face began to radiate with appalling, throbbing pain that gradually spread down my neck to my left shoulder and then across both shoulders and down my back. I had just lost my job, had no health insurance, and was left to fend for myself in the middle of a banking crisis and general global economic meltdown.
I was eventually diagnosed with hard-to-treat Dystonia, the third most common movement disorder after Central Palsy and Parkinson’s. But being accurately diagnosed was only the first part of the battle. My arms and legs swelled up with bright red bumps and lines after I was given all the treatments “normally” given to treat this condition, which range from “standard” neuropathic medicines to Botox.
In desperation after I stopped being able to speak, and movement was so painful that getting out of bed to go to the bathroom became a major chore, I found a cannabis trial for Dystonia in Canada and begged the neurologist in charge of the same to speak to my doctors in New York. She did. I was then given high doses of dronabinol, which began to do their magic. Even in the US, because I was living in New York with no income, this was actually provided free of charge.
Three years later, my life completely destroyed, I slowly began to be able to function again, although operating on the borders of homelessness. I have no family to turn to. I am on my own. I did notice, however, that dronabinol did not work as well as cannabis flower.
It was during this period of time that I decided to try my luck in returning to Europe. I thought that at a minimum I would receive proper healthcare and figure out the rest as I went along. My father was a Holocaust Era German Jew. I had all his papers. I was supposed, per Constitutional law to obtain my German papers within three months of applying.
Things did not work out that way. I had to sue the government, a process which took seven years – two to actually find an attorney willing to take my case pro bono, and five to work through the court system to the Bundesverfassungsgericht (German Supreme Court), which ultimately approved my case in a ground-breaking legal decision that profoundly changed how Constitutional law is actually applied to victims of the Holocaust and their descendants. See 2BvR 2628/18.
Along this long and torturous path, I learned German, obtained an EMBA from a good German business school, and started my career in the legal cannabis industry.
Documenting Medical Necessity
I also went to several doctors to try to get documentation of my condition in Germany. As a private payer (I could not afford statutory healthcare when I first landed here as I was an “older student” who did not qualify for discounts on student health insurance coverage) and literally survived on fumes, I knew I had little chance of coverage at this point, but I tried to at least get documentation of my conditions.
I finally won my citizenship in the middle of the Covid Pandemic, but promptly managed to fall through most cracks in the system and almost went homeless after losing my income as a freelancer and having nowhere to turn. The Jobs Center is an appalling place to land. They do not care, they treat you like animals, and in my experience, find ways to make an already difficult situation even worse. If you are, like I was, on private health insurance, they do not pay you extra to look after your medical care. In fact, what they pay you, even before the explosion of inflation, is not enough to live on.
Affording medicine has been a serious issue for a long time. I have often had to source what I use from less than legitimate sources.
There is no choice. If I stop using cannabis, I stop being able to speak. Muscles all over my body, starting with my neck and throat, freeze. My face begins to distort and shift into painful, permanent positions. The pain that comes with this is neuropathic, unmanageable, and resistant to all other medicines and treatments that have so far been suggested or prescribed.
Under German law, the first test of “medical necessity” is if a doctor writes a prescription. I have met that test multiple times.
Applying Under German Public Health Insurance
In May 2021, I finally got a German job that helped me get into the German public healthcare system (after being turned down for even that, multiple times because I was not born here and had no history of public coverage).
Even prostitutes in Germany can get statutory coverage. I did not even qualify, according to every statutory insurer I tried to get coverage from.
At that point, my search for a cannabis doctor began in earnest.
Even though I work in the industry, this was far from easy.
I got referrals from people I know in the industry, but these were all doctors who either charged a private fee upfront for the prescription on a regular basis or refused to even see me until I had been approved by a health insurer (a terrible unending circle).
During all of this time, I had been sourcing my cannabis however I could, and whenever I could afford to pay out of pocket.
It is the only thing between me and complete disability. When I have to stop taking the drug because I cannot afford to pay for it myself, my left side freezes, I am unable to speak, function normally, or work, and my life is a living hell. With it, my life becomes relatively “normal” again.
In March of this year, I finally found another sympathetic doctor, a neurologist and psychiatrist, who looked at the thick brief of medical notes I had by this time amassed, and without fail, wrote me a prescription, filled out my insurance form application for cannabis, and printed out a list of academic medical studies several pages long proving that my condition could be treated effectively with cannabis. He also noted my allergies to the medicines most “normally” used to treat this condition and included a brief text by Franjo Grotenhermen discussing the effective therapeutic use of cannabis for conditions such as mine.
As of yesterday, I was turned down, again, by my health insurer, TK, who cited the opinion of a doctor at the Hessen MD. The opinion said that I was not suffering from a major illness, that there was no “proof” that cannabis treatment actually worked, and that there were other options I could try (without naming them).
On the eve of more cannabis reform in Germany, although far from a comprehensive kind, it is time that people understand how dire the situation actually is for patients.
This was also never the intent of the 2017 law, much less the definition of “medical necessity” of German law more generally. Being outside of a system where healthcare coverage is required, and you cannot get proper medical treatment is in fact a constitutional violation.
What Comes Next?
So far, health insurers and the MDs in every German state, have repeatedly violated the premise of the 2017 law every time they turn down a legitimately sick patient whose doctor has written a cannabis prescription. Namely, it is a personal doctor, not even a specialist (although in my case I have two ´specialists) who is the best judge of whether a person is significantly sick and further, should get the drug.
In my case, this has now been violated twice by the state of Hesse, and of course, my health insurer has just tagged along, claiming in fact, that I am “not really sick,” and that I have not provided enough evidence and that there is no “proof” of efficacy.
None of this is in fact true.
However, the reality is that I am now stuck in an endless legal appeals process, with little money, during a period of high inflation, and almost no medicine.
What Needs to Change
Someone like me will be pushed, inevitably, into the world that our German legislators are busy crafting right now. Namely, devoid of medical attention because I cannot afford it privately, I will be pushed into home grow and joining a cannabis club, should these options actually become legal, because the legal limits for personal possession now being discussed by the government will also not be enough for me.
My doctor has written a prescription for 120 grams a month.
This will also cost me about as much as I pay for rent.
If they do not, I am at risk of criminal prosecution every time I try to obtain cannabis to treat my condition. Or becoming completely disabled in a world where I do not qualify for any other benefits.
Under the new law, should it be passed more or less as has been leaked, I will only be able, if I can afford it, to buy less than half of what I need at a social club, and be on my own to source the rest, presumably by growing it myself. However, the idea of being forced to harvest at least 240 grams of quality cannabis every three months, or more realistically over 300 grams in four months, should my growing activities turn out to be successful, is ridiculously painful if not flies in the face of the basis of German law.
Beyond this, I will be essentially forced to operate outside of the medical system, and all because a German healthcare provider and the state of Hesse have decided, against me and my many doctor’s opinions, that I am not really “sick enough.” Or that “medical cannabis” is really not a drug of last resort for me.
So far, these kinds of debates have remained outside of the current discussions about reforming the law.
And I am far from the only person affected by this.
That is not ok either, particularly in a country where healthcare coverage is required, and you can get dragged into court if you refuse to pay your premium, and you can also get arrested and criminally charged if you do not obtain your cannabis through “legal channels.”
In other words, in Germany, land of supposedly “comprehensive health care coverage,” it is a “crime” to be sick if you are a cannabis patient.
Broken Promises, A Fractured Constitutional Mandate
On June 1, I will celebrate a decade of living in Germany, and have already challenged and won a major constitutional case. Yet, the very basis of winning that and thus citizenship, namely proper protection, and treatment when I get sick, has been repeatedly violated.
I may have won the first tenant of German citizenship. But I am absolutely lacking the second and equally important second part of the same.
It is time to fundamentally change the law, starting with medical access. The rest will follow. But my future is not in a cannabis club, nor should I be forced to grow my own.
The current system is broken. It is a constitutional issue. And both the government and the industry need to step in, if not step up. Under the current system, the refusals to look at medical evidence do constitute a screwed up system, where the people who are breaking the law are the organs of the state itself and insurance companies, not the sick people they keep turning down.
In the meantime, I am looking for a good medical rights lawyer.