Panacea

Hello everyone,

I am Valérie Védère, 58 years old, mother of a 23 year old young man (medical student), living in the Bordeaux region.

I will give you a short summary of my life as a patient since 1986 when I learned of my HIV status (then 4 months pregnant) and chose a therapeutic abortion given my life expectancy (it was only 5 years at that time and as for the unborn baby, the doctors could not really say as they had no perspective at that time, but give a life expectancy of maybe 3 years).

During all these years until 2012 when I contracted ENT cancer, I used cannabis recreationally (but it must be remembered that in the dark years of AIDS, the first 10 years before the arrival of innovative and effective therapies), many AIDS patients used cannabis to fight against anxiety and weight loss.

So with hindsight, today I tell myself that I used it for pleasure but also medically.

For 30 years I took many treatments to fight HIV and I developed neuropathy-type pain (feeling of having my hands clenched in a vice, tingling to the point of not being able to hold a pen, etc.) and this for about 10 years. I noticed that when I smoked cannabis, my pain drastically diminished or even stopped altogether.

In 2012 I had ENT cancer with surgery and 31 radiotherapy sessions where I consumed cannabis every day (while my oncology doctor had warned me that the last week of treatment I would no longer be able to swallow because of the burns induced by the radiotherapy), finally I only had a very slight sore throat (I think that the cannabis could have had an effect but the doctor who was following me at the time did not explain it, but never wanted to admit that it could be linked to my cannabis use). 

For the last ten years I have been self-producing my cannabis illegally (with the stress that this can cause and we know very well that stress does not generate anything good in terms of health) and this until May 2021 when I was able to be included in the French experiment after a lot of insistence, calls and emails (all this to say that it was not easy at all), and in a center that had not left me with very good memories (because during the dark years of AIDS, many people ended their days in this establishment), today palliative care is not only dedicated to the end of life but also in follow-up care in oncology. 

This experiment was a breath of fresh air for me, but since last month my treatment has been amputated of one of these medications (dried flowers to vaporize) which is really lacking in the treatment I had for 3 years sublingual oil/flowers (which forces me to return to the black market) if I want to be able to continue to maintain the quality of life acquired during these last three years, but however with additional stress, that of the police and justice.

Today I want to get involved as a patient in order to inform and educate the various caregivers with a view I hope to a future generalization, planned for January 2025 and once again postponed (to perfect my knowledge I followed and obtained the first university diploma on cannabis  provided by the faculties of medicine of Paris Saclay and Montpellier in 2021), of which Dr. Douek is one of the initiators with Pf Benyamina and Pf Labauge.

France is very cautious, many caregivers in France are not even aware that such an experiment has taken place or for those who are (wait for randomized trials).

In my opinion, it is necessary to inform and educate caregivers and the general public before this future generalization (to change the bad image that cannabis gives in today’s society in France).

Areas that I can approach with sufficient ease French experimentation (as a patient included)

Given the French situation with a postponement it seems to 2026 (while a generalization for the 5 indications was planned for January 2025): it seems to me that we should approach politicians to discuss this subject before the assembly (Ms. Anne Souyris for example) who questioned Ms. Minister of Health Geneviève Darrieussecq on the withdrawal of vaporizer flowers on 03/10/2024. 

I am also considering a possible appeal for a break in care following my inclusion in the experiment and the abrupt cessation of vaporizing flowers.