Cannabis.es took the opportunity this summer to travel to Santiago de Chile and talk to the Daya Foundation people, the first therapeutic centre specialized in cannabis solutions in all of Latin America. They are also pioneers in the struggle for regulation of cannabis in Chile. Daya in Sanskrit means “compassionate love” and it is precisely this vision that is key to their success: a genuine commitment to the wellbeing of their patients and the conviction to fight human suffering. And, also, the desire to clear the name of the plant.
We visit the Daya foundation and bring to you cannabic wisdom from Chile
The head of Daya, Ana María Gazmuri, a well-known actress and media personality in Chile, created the foundation in 2014 to formalize a therapy work that she had been practicing for a long time in her house living room. She tells us about the moment when the centre specialized in accompanying terminal patients: “during that process, other facets of medical cannabis appeared. We had the first consultation for an epileptic girl. They were thinking about trying this option, and we took the risk. The plant’s low toxicity allowed us to start in a certain darkness”. They soon realized they needed to grow and to do so they needed a big crop that would enable them to investigate, perform treatments and break down social barriers. As Ana María says, “a great crop was something symbolic”. To achieve this, they created Daya, a non-profit foundation that was born with two lines of work: the first one was centred in getting the permits required by the administration to develop a big crop. The second line of work was dedicated to home growing, with formative workshops for patients who could not afford the luxury of waiting through the bureaucratic process. “Every Saturday we had 40 people in our house learning how to prepare things. The first footage that Chilean TV showed of a medical cannabis workshop was taken in our house. That was four years ago, it was ground breaking. The footage was shown in an investigation show, it was all still taboo back then. Our faces were all blurred, of course”, remembers Maria, laughing.
The team grew as well. The new additions were her daughter and her husband, Pablo Meléndez, in charge of the crop, and Alejandra Ahumada, pharmaceutical chemist. It was obvious that Ana María needed to keep her private life separated from the therapeutic work for her own good. They moved to a space offered by sister associations and last year they got their own office, placed in the comuna of Providencia, North East of the city. A big and cosy house, surrounded by a beautiful garden. A place that brings peace, were you feel at home. As you go in, you are offered something to drink, every Tuesday and Thursday there are formative workshops and the consultations take between 45 minutes and an hour.
Ana Maria makes it clear: “The attention we display here is comprehensive, we really look at the human being in front of us. We do not only want to incorporate this therapy tool that is cannabis but we want to change the paradigm of health and well-being. We understand that health management is operated by different social actors but we always let the patient be the one making the decisions, while the professional doctors and therapists are there to accompany. We pursue the patient’s self-empowerment, we want to make the relationship with doctors horizontal, because our patriarchal culture has awarded them with omnipotent power. Our own knowledge has been denied, along with our own experiences and the wisdom that should be a good part of health management. That was the vision we started to develop. Today our team is formed by 27 workers plus the crop growing staff. We are present in 15 cities in Chile and we have a collaboration network present in Ecuador, Colombia, Uruguay, Argentina or Mexico”. They have received more than ten thousand patients with all kinds of oncological pathologies, epilepsies, diverse chronical pains, Parkinson, disorder of the autistic spectrum, anxiety and other strange pathologies. They also offer judicial advice and a social communication service.
“We understood that, in addition to dealing with the authorities, the parliament and all those decision makers, we also had to work from the social base in communities”, says Ana Maria. To achieve their goal, they have travelled through the country giving free speeches. To this date they have reached approximately sixty thousand people. According to her, “this was very important because when you take the trouble of offering a nice presentation, in a nice place like a theatre, with an hour and a half to explain the plant’s history, the reasons behind its prohibition, the fact that science or health were never behind the prohibition decision, or explain the corporate interests that led to that instead… When you take people through that journey and show them the real experience, it changes people’s vision totally”.
Their goal was not the cannabis community, they wanted to reach the sceptics. It was not about self-reference; the objective was to get families to talk about these things. Ana María admits they had an advantage in her being a public figure. “People have known me for thirty years because of my acting career and presence in the media and people always appreciated me. I was always involved in social and political causes, like bringing democracy back. Let’s say I am a very active citizen and that is why I had the public’s trust. So, when they heard me speak about medical cannabis for the first time they had an open attitude towards the issue”. The media also opened their doors to them, but as Ana María explains it was a hard process. “Early on, they would play Bob Marley music in the back and show footage of a Rastafari. I said to them I loved Bob Marley but I didn’t want them to insist in the cartoonish representation, we were serious about what we were saying”. Now the press treats them as relevant political actors, and the stories on medical cannabis are informative and for all audiences, a change that reveals the new Chilean attitude towards marijuana. She comments, laughing, that not long ago they were talking for an hour and forty minutes in a morning show. “The hosts tried the drops and our therapists showed the creams, the things we work with, everything”:
When they started out the legal framework was the Chilean Law 20000. According to said law, it was possible to obtain a permit from the Agricultural and Livestock Service to cultivate opioids for scientific or medical purposes, so Dayak did the homework and presented a scheme that they could not refuse. At one point during this process a prestigious legal entity offered their help and advised them for free. But once they got the license from the State a contradiction arose because it clashed against the health regulations. Therefore, they had to fight for changing the law, an effort that brought about the Decree Law 404-405 of December 2015 that allows importation, exportation and selling of cannabis, whether it is in extracts or as a raw material, and enables doctors to prescribe marijuana. “That was the first step towards legalization, but oddly enough it went unnoticed because this Government has two souls: one that is pretty conservative and another that is more open to transformation. That is the explanation I give myself to why such an important development was not publicized. If you make too much noise about it the conservative sector will be annoyed”, Ana María says. She also adds that in 2015 “the Court started ruling in favour of home growing and recognising the crops for personal use as lawful. The truth is that if we strictly interpret the law that is precisely what it says, but it was wrongly interpreted and badly implemented all these years. In fact, the Court’s vision goes way beyond that of the Chamber of Deputies, much more limited. In the end the new Decree Law is stuck and we choose to defend what the current law says, with all its flaws, because it allows us to grow the plant. Also, all those cases won set precedent”. The fight for home growing is still being fought on the courts. Last August 26th a father linked to Mamá Cultiva was arrested, and the plantation used to treat his four-year-old daughter was seized. Mamá Cultiva, foundation sister to Daya, was born precisely to grant visibility to paediatric use of cannabis and to protect families from this kind of situations.
Daya Foundation defended from day one three different ways to gain access to cannabis: home growing and extracting for the simple treatments, access to economic standardized formulas for more complex cases and the existence of collective plantations. These are ways to ultimately democratize access to the plant, something that has not pleased a good part of the medical sector as Ana María recalls, as some have fought them hard. But all the arguments against them have been rebutted and nowadays they work in collaboration with 37 doctors and numerous health entities.
Despite not having a regulation frame as large as Uruguay’s one, Daya’s approach has succeeded to legitimize the medical cannabis practices in all its forms and generate a social change worth of envy. In fact, they have got many Uruguayan patients because, as they explain to me, the prescriptions handed there are exclusively for products imported from the US. According to Ana María “what happens when patients incorporate cannabis is they cut down the consumption of other prescription drugs and they stop spending lots of money. They also cut down the frequency of their medical check-ups because they feel better. The monthly visits turn to four months visits, five months visits. And that expense also decreases. For instance, kids suffering from epilepsy are being offered operations as one of the first solutions. Instead, we try to help the kid using a plant, something that sounds more reasonable than opening their heads, and these cases also affect the business model of private medical corporations. An operation is very dear and in Chile healthcare is highly privatized, so for many families, along with that choice comes selling their house, all to very uncertain results.”
They know the value of a good strategy, that is why they were very cautious before they made the paediatric cases public. They needed to be sure they were not putting the children’s custodies at risk. That is why the political pedagogy and the work done with the authorities were essential. As Ana María says, “you need to know how to seize the moment”. The use in minors might be one of the most controversial subjects, nevertheless Daya has obtained promising results in the therapy aspect as well as in the social normalization one. Ana María elaborates that “retrospective studies that we have presented showed very good results in kids with refractory epilepsy and autism. When a kid enters a convulsion state and is taken to emergencies they fill him up with benzodiazepines. These sedatives leave the kids two or three days crushed. When you rescue a kid with medicinal cannabis, even with important doses, the kid is going to sleep a lot and will rise in the morning like nothing happened”. Ana Maria tells us they have gotten authorization for treating patients inside hospitals. “Last week we had a cancer case and we were able to introduce a vaporizer into the hospital with the doctors’ consent, in fact we had a meeting with the whole of the paediatric oncology department because they saw the case and wanted to know more, they wanted to start gathering information on this subject”.
Their patients are their best publicity before the medical community and society in general. Daya has become a reference for citizens, to the point that some patients have arrived after being advised by the general chief of the Investigation Police, something that can only happen after years of educational work with the State security forces, because political pedagogy has been an important part of their success. Also, lately Daya has been developing a wonderful educational work that brings the cannabis issue to kids with the focus on prevention and from a real information perspective instead of dogma. Explaining that there are multiple perspectives and experiences for the kids to make informed decisions, Ana María explains that in these talks they work on damage control. “Safety above all things, but accepting reality instead of an imaginary world that works the way we would like it to. If the kids decide to consume, even after learning about all the consequences, at least let’s make that decision as safe as possible. The approach is the same of sexual education, to deliver tools to kids so that they can diminish the damage and know how to take care of themselves”. She also tells us that they invite kids to reflect on their consumption. “How often do you do it as a mechanical habit? Why are you doing it? Why not try it in different context? Why not focus on your breathing, your posture? Imagine using it to know yourself. The real problem is nobody has ever told them that.”
We also talked to Karina Vergara, part of the research team in charge of medical studies. She is a college graduate in Biological Science by the Universidad Pontificia Católica de Chile with a Master in Science by the Universitat de Barcelona. Her professional experience comes from investigating eco-social problems and the management of natural resources, but the cannabis arrived in her life after a relative was diagnosed multiple sclerosis. “The main difficulties for the studies on cannabis have always been lack of funding and the alegal status of the plant. That’s the reason behind the scarcity of official scientific data and that is why it is important to gather them”.
The present study focuses on adults with different types of cancer, it meets all the scientific parameters but it is a small, humble study compared to the ones performed by pharmaceutical companies. “Most patients are from Santiago de Chile, although there are some from other near cities”, comments Karina. The study is performed in three hospitals of the Florida Comuna, located on the Southeast of the city. The town contributes a small amount to finance the study and the medical monitoring, Daya contributes with the plantation and the KNOP laboratory transforms the plant into oil using a standardized formula. Nowadays they are using the 2014 crop and using the whole plant because, as Karina insists, “it is the best way to achieve the synergies that enable us to explore all cannabinoids”. They are basically doing the same as the famous Sativex but accessible to any budget.
“Before we start, the patient spends a week writing down all the secondary effects the traditional drugs give them, and then we begin the cannabis treatment. Patients take in a small dose that is progressively raised until each find their tolerance limit”. Karina also explains that cannabis accompanies all other therapies but does not substitute them. The study pursues granting the patient a better quality of life and convince the medical authorities of its benefits using the only data irrefutable to them: the scientific data. “The idea is to show the numbers of what we sense from our personal experience”, adds Karina. So far, the study has not had patients with serious secondary effects. Some minor symptoms have appeared, like headache, dizziness or nausea.
The main problem for the study has been to get enough patients. Normally the doctors, sponsored by the pharma industry, send the patients in for these clinical studies, but Daya are not a big company and don’t have a lot of doctors. They harness everything they have around like social networks and media but the answer has been timid, “mostly it has been Young doctors who have approached us but they have been very few”, says Karina. Although they expected to have results by this summer, the scientific process is unpredictable and it seems we are going to have to wait until early next year. But Daya is already thinking of the future, with the crops of 2015 and 2016 they want to perform multiple studies, this time over other pathologies and in other formats.
A Daya future
It seems incredible that one foundation provides so many services, especially considering they don’t have any State or corporate financial help. They are partially funded by the small donations that the partners make, by the money paid by the patients for the cost of the treatment, below market value, and the support from different private and public entities that collaborate eventually with investigation studies or with the plantation. They look everywhere for funds and they still give service to a large group of people free of charge. It is worth mentioning their Alliance with Aus Cann, an Australian corporate group that has brought funds for their institutional strengthening. Daya Cann comes from this alliance, and is dedicated to grow medical cannabis, for the moment for investigation purposes only, due to licenses, but with the intention of taking more steps. “This was huge for us because what they valued was our model”, Ana María explains. “That model, placing the patient as the centre of everything, achieves a lot with very little to start with, and is one the public healthcare systems could learn a lot from.” According to Ana María, “the system’s efficiency could be dramatically raised only by paying great attention in the first visit, to really get to know the patient. You could probably save lots of steps if you took the trouble of offering a true integral attention, but the public system demands 12 minutes per patient”.
Daya hopes to continue the training of health care professionals to enlarge their medical staff and to continue the home growing workshops as well, the education and drug use prevention. Ultimately to widen their vision of what health is and articulate all the work forefronts. They would like to open Daya centres throughout the country to decrease the waiting time for patients and generate activities for carers. “We are looking for a bigger house now because we are going to incorporate more doctors”, says Ana María. And they are also going to start an area for psychedelic studies to investigate the therapeutic use of other substances but escaping the western perspective. “We want to open the door to this type of therapies with rigour and seriousness, incorporating all the sensitive aspects and not only the biomedical parameters. I understand there are lots of narratives juxtaposed in the use of these substances, knowledge that comes from culture, traditions, from the social, the community and the medical aspects”.
We finally asked Ana Maria if they had any advice for cannabis activism, and she was clear when she said that the most important thing is not to forget that we are working for society, “to open the conversation in terms that people can understand. Be pedagogic, simple, clear. On the other side install the abilities, do not keep the knowledge and instead empower and transmit it, that is the revolution that we want to see take place, because a person who’s able to make their own preparation can teach another one and that one can pass it on to another one and that can reproduce to infinite. There are remote or not easy to reach places where we will take long to get to with the medical monitoring, but we know that there are workshops taking place and that is wonderful”. The last thing she tells us is we need to trust the plant and bring it back to the place it deserves as an ally to human being.