Prescription of medicinal cannabis

Since 2022, an exemption permit is no longer required for the prescription of medicines containing THC. In addition, doctors are now also allowed to prescribe flowers. One affected person describes her long and difficult journey over the past few years, through the various stages, until cannabis flowers were prescribed and the costs were covered by her health insurance.

Status: May 2024

I have personally felt all my life that something was not quite right with my body. Everything always felt very sluggish. Movements, especially fine motor skills, pushed me to my limits even at a young age. I was noticeably slower than other children, I rarely completed manual tasks and my handwriting was noticeably poor. Physical education? That was a real horror. I never lived up to what was expected of a child's physical performance.

Nevertheless, I lived out my childish urge to move wildly. I tried my hand at various sports, loved dancing and was actually always 'on the road'. Many things that required physical exertion were practiced rather slowly by me. I personally didn't notice this, but my school and work environment noticed it all the more. I was always slow and this was somehow turned into a character trait. Including myself.

So I lived my life with more and more complaints. At some point, nocturnal calf cramps became a daily occurrence. This was accompanied by pain and other cramps in various parts of my body. When I started working with children, I noticed that my body was showing more and more of these symptoms and so my GP referred me to neurological specialists. I was 33 years old at the time. As soon as I was in the neurologist's consulting room, he noticed my feet and said: “Oh, I can probably tell from your feet which neurological disease you are suffering from. You have typical CMT feet.” A genetic test then gave us complete certainty: it was CMT (Charcot-Marie-Tooth disease, now also known as hereditary motor-sensitive neuropathy type I [HMSN I]).

CMT is a genetically inherited disease that causes a specific gene to mutate. This causes the nerves to become thickened, which in turn greatly compresses the nerve impulses. These important impulses no longer reach the muscles properly, resulting in muscle atrophy. The peripheral nerves are affected, thus affecting gross and fine motor skills. The myelin layer of the nerves is damaged. This disease is incurable. The physical fatigue that goes hand in hand with it is also very difficult for me.

I first had to digest this shock. But it also gave me some answers. I finally knew that the problem wasn't me personally, but simply my body couldn't help itself and never could.

I was then given a medication for my complaints, especially at night. “LIMPTAR N”, which I now had to take every day. Oh no, the biggest nightmare for me! Being dependent on strong medication: a huge trigger issue for me, as I personally come from a family with a history of addiction. I have an extremely complex relationship with addictive substances and have developed a strong aversion to such things. I communicated this to the Muscle Center St. Gallen right from the start. I was met with the greatest understanding. Nevertheless, I had to take this medication from then on.

No sooner said than done – so I took these pills, always feeling very bad. The fact that I had to take them for long periods of time was an additional stress factor. I didn't notice any improvement in my symptoms. The doctors told me that I had to take the medication every day, but I couldn't see the point. During personal research into the medication, I found out that it is used for malaria and is also very controversial. This was the deciding factor for me to replace the medication with something else.

In the meantime, there was a change of doctor. I also discussed my concerns with my new neurologist and explained my family background and the associated fears. She prescribed me a new medication. When I read the package leaflet, I thought “no thanks” – nobody needs these side effects. I didn't take a single tablet.

I had already been looking for alternatives for my symptoms myself. The disease CMT is comparable to MS and so I quickly came across cannabis on the internet as the right alternative for me.

I immediately switched to cannabis and always communicated this openly with my doctors: the neurologist was immediately in favor, the family doctor was immediately against it. He said I was too old for it (Hmm, ok merci ;)).

The muscle center advised me not to apply for an official prescription for cannabis. The bureaucratic effort would be far too great. That may be true, but the damage I do to myself with other chemical substances is not worth it to me personally and I feel that the damage is greater or more drastic. I have to live with it, don't I? I want nature and cannabis. Fortunately, the CBD boom was also quite big in Switzerland at the time, so I combined CBD drops and THC flowers. The cramps became significantly less, and the pain management was also much better. I finally had hope again and was shockingly in love and grateful for this opportunity. The fact that the people at the St. Gallen Muscle Center were so supportive of my decision was and is very valuable.

I asked my neurologist again whether we could apply for an exemption from the FOPH for the THC drops. She agreed, as she is also convinced that cannabis helps me.

Just in time for my first stay in rehab due to illness in 2022, we received the go-ahead from the FOPH. I was officially allowed to obtain the Fankhauser drops (from the Langnau station pharmacy). My neurologist and I agreed on a dosage. I opted for the drops with 5% THC, as I had to pay for them myself. A 10 ml bottle cost around 175 francs.

And so I waited and waited, entered the clinic and waited for a prescription, which never came. Five weeks had passed and I asked my neurologist when I would receive the prescription? “This went straight to the pharmacy.” Oh yes, I couldn't have known that. So I contacted the pharmacy in Langnau and was able to get my first bottle. I asked what it would be like if I had to prove that this was my medicine and the police, for example, didn't believe me? How can I identify myself? But that's not necessary because my personal details are printed on the bottle.

Vial with THC drops

I quickly became disillusioned. The medication was far too expensive and so I was underdosed. I was supposed to take several drops a day. In the end, I only took them for acute complaints or when I knew that I was going to be under a lot of physical strain. That's not quite the purpose, I always had to supplement with flowers from the black market. The health insurance company didn't want to cover the costs anyway. Our first application for reimbursement was of course rejected.

The first recipe for cannabis flowers	The second recipe for cannabis flowers

When I then found out that cannabis in flower form would be possible from August 2022 and would also be available from December 2022, I spoke to my neurologist again about a change, which she agreed to. However, she knew exactly nothing about dosage and co. and almost backed out. I tried to motivate her to take this opportunity for us. She went along with it.

Pre-dosed flowers for vaporizing

Now, full of enthusiasm, I had to find a pharmacy in my area that was prepared to dispense the medication and draw up a dosage plan with my neurologist. It was a real odyssey until we found a pharmacy. Eventually we found one. However, they insisted on granulating and pre-portioning the cannabis: After all, I was a patient and there was a risk of overdosing. As a pain patient, the pharmacy specialists gave me a dosage of zero-comma-something grams per day. I was then able to pick up the first doses and I tested the strain (editor's note: variety) “Afina” for ten days. I couldn't say anything about the effect, as 2.5 grams were divided over 10 days. This dose is far too low. I would have had to pay 119 francs for it. The price is – as was to be expected – far too high. I grumbled and also tried to draw attention to the fact that barking destroys the active ingredient in the flowers. I was accused of not arguing scientifically, so to speak, but only with my stoner heart. Wow! They assured me that if they could find studies on my claims, they would be prepared to give away whole flowers. I have never heard from them again to this day.

So, new pharmacy to look for. Fortunately, I am a member of Association Medcan. Then I found out that the Stauffacher Apotheke dispenses whole flowers. Shit, that's in Zurich, I'm not very mobile. Luckily for me, I found out that this pharmacy delivers to my home. Jackpot!

After a brief discussion with my neurologist, I have a patient consultation with the pharmacy the very next day. The best thing about it? Together (!) we discuss what is good for me, what I need and what our options are. And so I ordered the “Gorilla Glue” strain for the first time. Since then, the range has greatly improved and new strains are constantly being added.

Medical Strain “Jealousy”	Close-up

Medical Strain “Kandy Terpz”	Close-up

Medical Strain “GMO”	Close-up

We tried again to get the costs covered, as I had already been paying myself for some time.

Unfortunately, these costs are still far too high and vary between 9 and 16 francs per gram. This depends heavily on the strain. The strains currently come from Canada, Denmark, the Netherlands, Switzerland and Portugal. These include strains such as “Gorilla Glue”, “White Widow”, “Jealousy”, “MAC” and many more. The ingredients are also available in all versions: from 15 to 28 % THC. A prescription is valid for three months. It should definitely state that a certain range of THC content is possible. In my case, for example, “various flowers with an active ingredient of 15 to 28% THC for inhalation”. This is the only way to benefit from different strains. Daily dosages vary greatly, depending on the clinical picture. I am perfectly happy with 2.5 grams per day.

Unfortunately, the second request was rejected again. I couldn't believe this after I had called in advance to find out what my chances were. They were very good and then I received a rejection anyway. Reason: The medicine “Cannabis Flos” (hemp flowers) is not on the Swissmedic list (specialty list). We have now submitted a reconsideration request, because in the long run I will have to remain underdosed again, as the high costs mean I cannot obtain enough cannabis.

The Association Medcan advised us to include Art. 71b para. 1 KVV in our reconsideration application. This refers to cost coverage for rare diseases. This has now been approved since November 2023 and I am very grateful to finally have these costs covered.

I now consider my situation to be super privileged. I am aware that most patients in Switzerland are still operating illegally because, among other things, they cannot afford these horrendous costs. I also believe that many do not take cannabis because they are afraid of losing their driver's license. This doesn't affect me, as I don't drive. But in my opinion, this should also be strongly reconsidered and the upper limits should be adjusted.

It's nice to know that everyone in Switzerland can be prescribed this medication. Nevertheless, in reality, very few people are issued a prescription because of doctors who are reluctant or ignorant. There are many uncertainties.

The costs urgently need to be reduced. The costs really do prevent many people from being prescribed cannabis. Health insurance companies should definitely cover these costs without any ifs and buts.

Since I have been taking the flowers regularly, I myself have been stable and tend to have good physical phases. Medicinal cannabis helps me a lot to cope with my everyday life. It was interesting to see how the medical market has changed in the last three years. However, I hope to see many more positive changes for the benefit of patients.

The one thing I would improve at the moment is that cannabis is not dried to death. I believe that this is why the flowers rarely smell as expected and often have a “CBD smell”: Probably because it's been over-dried. So if you have found a super tasty and useful strain in Amsterdam, for example, you have to be prepared for the medicinal equivalent to smell and taste completely different. This can be disappointing under certain circumstances. However, the effects are just right and that is important! It helps. At the moment I really like the strains “Kandy Terpz” and “Jealousy”. “Kandy Terpz” is even rather tasty. However, all impressions and experiences with cannabis are always individual.

The second thing I would change is that other forms of use should urgently be possible. So not just drops and flowers, but also extracts, edibles, capsules, etc. These products are already available in individual pilot trials. I think they should also be made available to patients!

Medical confirmation for the prescription of cannabis