Portuguese Observatory of Medicinal Cannabis under contestation by patients and nurses

The Portuguese Observatory of Medicinal Cannabis (OPCM) is being contested by patients, nurses and health technicians, who complain of being prevented from participating in the 1st National Conference on Medicinal Cannabis. The CNCM will take place tomorrow in Coimbra and will only accept registrations from doctors and pharmacists. OPCM members are outraged by “discrimination” and say that limiting access goes against statutes of the OPCM itself, accusing the association's president of “censorship” on social networks.

The Cannareporter questioned the president of OPCM, Carla Dias, on the reasons for limiting access to the national event, but received no response.

A patient association that “does not represent patients”
“The OPCM is an association that was created on behalf of patients who need cannabis to improve their quality of life and its main objectives should always be to put patients first. Why can't patients, caregivers, nurses, therapists and health technicians participate, as they are essential for monitoring patients and their evolution, before and after medical cannabis?”

The words are from Paula Mota, Jurist and mother of Margarida, 13 years old, who suffers from refractory epilepsy. Paula is a member of the OPCM, but says that neither she nor other members feel represented by the association. “At this moment, it is with sadness that I see that patients do not feel represented by this association, since everything that has been done seems to me to be more directed towards the propaganda of pharmaceutical companies operating in Portugal, which have done very little or nothing for the Portuguese patients”, he laments.

The limitation of participation in the CNCM conference to doctors and pharmacists generated discord between associates, patients and nurses in Portugal

Paula says that there are several issues that she would like to see clarified by the OPCM. “Why patients were excluded from the 1st CNCM, since one of the objectives of the OPCM is 'Inform, support and guide, at all levels, in the context of its object, patients and users of cannabis-based medicines, preparations and substances for medicinal purposes, respecting the Right to Health enshrined in article 64 of the Constitution of the Republic Portuguese' – well, the fact that patients cannot participate is not, from the outset, a lack of respect for the right to health?”, asks Paula.

He continues: “Another of the objectives enshrined in the OPCM statutes is 'Allow the social integration of patients aiming at their dignification and safeguarding their interests and rights, as well as support for caregivers or family members.' Now, isn't excluding patients from the conference a segregation of these? The OPCM was constituted for the benefit of the patient, how can it promote conferences and leave patients out of them? And why can't members with current dues also participate?”

Statutes are being “violated”
Baltazar (fictitious name, as he prefers to remain anonymous), a founding member and associate of the OPCM, who in the meantime resigned, along with two other founding members in disagreement with the direction of Carla Dias, says he is “shocked”, first because “he is going to against the statutes. It even seems like a lie!”, he says. “The OPCM does not really serve the cause of access to cannabis, but only the industry's perspective, forgetting who needs it most, the patients. It also forgets, in fact, that there are many patients who, in times of crisis, more quickly grab the Thermomix and make their own products, instead of waiting for the OPCM and its counterparts”. Baltazar also adds that he considers “an affront” the “highly restrictive – and at least suspicious – way in which they manage to do this with access to cannabis and its derivatives. Now even the patient is banned from the association's initiatives, when the statutes define precisely the opposite. The OPCM statutes are simply being violated, which is a real disrespect for the principles that moved and gave birth to the association”, regrets the founder, who also clarifies that “the 1st Conference on Medicinal Cannabis in Portugal took place in 2018, not in 2022. It is, moreover, a shame, given the reality of so many patients, who continue to hope for better days and seek support from institutions and health professionals regarding cannabis…. the OPCM simply turned its back on them”, he laments.

Paulo Patarra, who suffers from Ankylosing Spondylitis and is a member of the OPCM, also confesses to being disappointed with the association. “An Observatory that does not want the patient – ​​user included, is, to say the least, sad. It's strange, because the conference starts with a speech aimed at the patient… what a dystopia!”, he laments, while considering his continuation in the association. “I may not go to this one, but there is the possibility of going to others. I don't know whether to renew the quotas, I'm disappointed with the OPCM, we don't even have the right to complain, and after that interview with the president to the JN, which discredits the patient who cultivates his medicine, I was very sad. Patients have many questions and are looking for answers. I don't think this is where you'll find them”, confesses Paulo. And he leaves a warning: “This OPCM should be brought to the attention of cannabis users: 1. There is only one cannabis and all of it is medicine. 2. The use of cannabis and its purpose is an option or an individual need, which only concerns the user and the doctor, in the case of medicinal use”.

Exclusion of Nurses generates outrage

Some nurses expressed their discontent on the OPCM Facebook page.

For her part, Susana Alexandre, Nurse, regrets not being able to participate in the event and does not spare criticism of Carla Dias' performance. “I find it unacceptable that the OPCM has a president who excludes nurses from participating in that event, since they are the professionals legally qualified to administer medication. We must also consider the fact that cannabis is one of the available and scientifically proven treatment options, capable of offering an improvement in the quality of life of patients with chronic diseases, as well as giving greater autonomy in the management of the health condition of patients with certain pathologies. The Nurse is crucial in this context of help and action”, says Susana Alexandre, who is not satisfied with the way the OPCM has been managed. Paula Mota also warned of the lack of cannabis derivatives on sale in pharmacies and the fact that Carla Dias has entered a saga of defense of what is only “medicinal”, forgetting that what has alleviated the epileptic seizures of their daughters is a derivative of industrial hemp, previously considered a 'food supplement' and which is currently the only cannabis derivative that can be used in Portugal, albeit “illegally”. “Four years have passed since the legalization of medical cannabis and currently patients only have access to a flower of THC at 18%, on sale at an unaffordable price for most people, and which is prescribed for pathologies other than it. refractory epilepsy. The president of the OPCM has already said many times in the media that in Portugal there are no certified and safe medicinal cannabis preparations for use by patients. He has also stated several times that the use of this therapy has made all the difference in his daughter's quality of life, a situation for which I have the greatest empathy, because I experience the same, but my question and that of many other patients is: where do you get the CBD oil? And who prescribes it for you?”, she asks.

OPCM accused of “censorship” on social networks
Over the last year, several people have publicly expressed their displeasure with the current management of the OPCM, but opposition comments are invariably deleted.

One of the deleted comments from an OPCM post.

“Why do you delete comments and not allow your social media posts to be commented on? Isn't this also one of the ways that patients have easy access to ask questions?”, wonders Paula, who commented on an OPCM publication and saw her comment deleted, having been blocked afterwards.

“In a country where CBD is used by a lot of children and adolescents for epilepsy and autism, what did Tilray give us? I tell you, an 18% THC flower, which cannot be used by children and teenagers and for those who can use it the price is exorbitant! This is what they gave to Portuguese Patients!” It didn't take long for the comment to disappear. “Comment deleted from OPCM page! Don't question Ms. President, otherwise they are banned”, said Paula. Likewise, Paulo Patarra also realized that he could not comment. “Is it censorship? It seems to me so,” he stated. “Am I the only one who can't comment on this post anymore? Or has the OPCM censorship become widespread?” asked one of the members of a group of activists for the legalization of cannabis. “The OPCM has limited who can comment, as usual,” replied Manuel (not his real name, as he prefers not to be identified), a cannabis legalization activist who also became an OPCM associate in early 2021.

He confessed to Cannareporter: “I don't think there is any effort to listen to patients or associates. They only send communications when votes are needed. For the rest, initiatives and dynamics for patients is equal to zero. It's seeing and being seen, it's good for egos and vanities, but for Portuguese patients it doesn't heat up or cool down. But also, which patients does the OPCM represent? This was the role and focus of the OPCM when it was created, but since the 'coup d'etat', the winds and wills have changed”, he laments, alluding to the last elections of the OPCM's social bodies, in May of last year. Manuel guarantees that the president of the OPCM only won at the cost of a lot of manipulation and under the strong opposition of several associates, in a general meeting where discord and controversy reigned, but Carla Dias' will prevailed. She left and stopped paying the dues. “If I'm going to continue on that record, I'd rather hand over the 22 euros to the black market. At least I have some feedback,” she says.

The comment by Rita Machado, pharmacist, which also went unanswered and was deleted by the OPCM.

“The CNCM does not bring knowledge to those who are no longer lay people on the subject”
Rita Machado, pharmacist, could even register to go to CNCM, as she qualified among the few professionals eligible to participate, but chose not to register. “The truth is that in Portugal I do not see that this conference can provide knowledge to an audience that is not laypersons on the subject”, she says. Rita was once an associate of the Observatory, but is no longer. “I received a call, but I did not renew the quotas.” And she confirmed the censorship on social media. “It's true, it happened to me too. This comment of mine disappeared from the post and I couldn’t comment anymore”, she reveals.

Hemp activists and farmers join criticism of OPCM
But not only associates, patients and nurses have criticized the OPCM. The president of the Observatory managed to gain, in the last year, the antipathy of a large part of the cannabis pro-legalization movement in Portugal, due to the various statements in the press and on social networks, where she has expressed herself. against self-cultivation and accused the legalization of adult use of delaying the availability of “products” to patients.

“In other countries, we have seen (unfortunately) patients who use medical cannabis become victims of the legalization of recreational use. Not so much for the legalization itself, but for the fact that producers are tempted to enter that market. Quality requirements are lower, rules are easier, controls are less stringent, and yields are (hopefully) higher. Result: medical cannabis received less (or no) attention and patients are still without the products”, accused the president of the OPCM, in one of her Facebook posts. Opposition reactions were not long in coming and several comments challenged her statements, but it didn't take long for them to disappear and it was no longer possible to comment.

The CNCM, organized in partnership with the Faculty of Medicine of the University of Coimbra, has several Portuguese doctors as keynote speakers and announced the participation of Vasco Bettencourt, Director of the Office of Cannabis for Medicinal Purposes of Infarmed IP in the opening session.