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Rui Nunes: “Everyone knows that the pharmaceutical industry, the government and Infarmed are hypocritical until they can no longer”

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Rui Nunes, Pulmonologist - Photo: Nuno Frederico | Cannadouro Magazine

Pulmonologist at Centro Hospitalar de Tondela Viseu, where he is head of service, Rui Nunes discovered, about two years ago, that CBD (Cannabidiol) could help with Autism Spectrum Disorder (AEP) in his 28-year-old son Nuno .

This interview was originally published in issue #2 of Cannadouro Magazine (on paper). 

Rui Dias Nunes, 61, was born in Santa Comba Dão, but moved to Brazil as a child, where he grew up and studied medicine at the Federal University of Rio de Janeiro. Married since 1988 to Martha Regina, also a doctor, Rui Nunes has two children and returned to Portugal in 1993, shortly after the birth of the eldest, Nuno Fernando, now 28 years old, and diagnosed with Autism since the two years.

Despite not having any knowledge about the benefits of cannabis and most of his colleagues and family not being very favorable, Rui Nunes decided to take the risk. After all, he had already experienced so much, sensorineural stimulation, hippotherapy, speech therapy, dolphin therapy, swimming, gymnasium, corticosteroid therapy and various medications. With the support of two former college classmates, he began administering CBD oil to his son. Nuno has improved considerably, but Rui is now facing difficulties in accessing cannabinoid treatment.

Nuno was diagnosed with Autism at the age of two and has since tried various therapies.

When did you find out that your child had Autism and how did they try to treat the condition?
Nuno Fernando has been diagnosed with Autism since he was 2 years old, having already been submitted to several therapies and various medications. He is now attending an Occupational Activities Center and with pharmacological therapy, having been associated with his treatment with CBD for approximately 2 years.

What improvements did you notice in Nuno after giving him CBD?
There were improvements in terms of affectivity, the need to be close to his father and mother, because he was very withdrawn. He got more used to the beach, for example, and the lady who helps us take care of him noticed that he was less afraid of the water and more interacting with the environment. It hasn't been 100%, but I've noticed improvements on several levels. The big problem is that we only have access to CBD from certain sources.

And how do you get CBD?
I now get it through a cannabis shop, but I used to order it from a company in England. The problem is that it was often stuck at Customs, it was very difficult, sometimes it took two or three weeks to get it available. I've already ordered in Italy and Spain, but the only one I find easier to access is in a cannabis store, but it's not full spectrum. I wish I had access to another type of cannabinoid and a good full-spectrum oil, but I still don't know where to find it. 

When did you first hear about CBD?
It was a friend of mine from college, who knew about this use in Brazil. She came to Portugal about 2 years ago and told me that a colleague of ours, a Neuropediatrician, used cannabidiol in autistic children with epilepsy. I got in touch with our colleague, who is a doctor in São Paulo, and it was, therefore, through the two of them that I learned how to use CBD. But the problem is that here in Portugal it is not very easy, because Infarmed puts up many obstacles. 

Nuno is currently 28 years old. Here with the parents, the doctors Rui Nunes and Martha Regina

Is access difficult?
Yes, which I think is a great hypocrisy, because we have companies in Portugal that grow cannabis, make products and export to several countries, while we are restricted here. On the one hand, they allow exports to other countries, but on the other hand, they do not allow people in Portugal to have access to these products.

Did you know that a prescription product is now available?
Yes, but I don't know if it covers the Autism part or not. I saw that a multinational company recently obtained authorization to place a product in Portuguese pharmacies, but I don't know how it can be used or what we need to have access to: what are the restrictions, what are the criteria to have access to this drug or if there will be anything available in full spectrum terms that can help our children.  

And how do you see this issue as a Doctor?
I'm also not trained, for example, to prescribe cannabis to other patients. I have a nephew who is a Psychiatrist and he says that there are many reluctances, especially in the field of Psychiatry, and nobody knows about this therapy, nobody has used it here in Portugal or knows how to use it. This is already a routine thing in Israel, in Brazil, and here in Portugal everything is still very closed, it's all very secret. We are late! Even in Brazil there are associations that work with this, they have to ask for authorizations, but it exists and is known. Here we have a series of obstacles, which is ridiculous, because the biggest problem is with THC, not with CBD. In terms of Autism, what my colleague Neuropediatrician tells me is that the doses of THC could even be a little higher than those that CBD usually has, because there is no problem. The safety profile is high and it's not addictive, but… I think they should ban tobacco!

And the alcohol.
And alcohol is not, if so! In my area of ​​expertise, tobacco has already caused serious damage to the health of many people, economic problems and family problems. They should be more concerned about these things. As a Pulmonologist, I see patients with serious problems due to tobacco addiction every day.

Nuno with his sister, after a hippotherapy session

Do you have many patients with tobacco problems?
Countless! I do a consultation just on smoking cessation and I tell my patients that tobacco is a drug, like alcohol, like cocaine, it causes addiction, and I have many more people with other problems because of tobacco, whether it's cancer or strokes brains or strokes. Many of the people who come to my consultation are unable to become tobacco-free, because they have a huge dependency, and this is a much bigger problem than the release of CBD in specific cases, such as Epilepsy or Autism. My son has been using CBD for 2 years and I don't see any side effects. And even if it had a higher concentration of THC I also believe it wouldn't be there. If there was control, monitoring by Psychiatry or Pediatricians who were interested in this, there would certainly not be so many problems. But I know this is difficult, because even I, at first, was reticent, but then it's just a matter of people trying to open their eyes more and look at things differently. And study, of course.

I don't know if you know, but CBD is also already being used successfully in the treatment of alcohol, drug and tobacco addictions.
By chance I didn't know about tobacco, if you can send me some studies I'd appreciate it.

Yes sure. Some people also stop smoking tobacco when they start smoking or vaping only CBD flowers. In the store where you buy Nuno's CBD, you can also find these flowers for sale.
Yes, these stores sell various things including flowers, teas, chocolates and candies.

What things have you discovered clinically about CBD in Autism?
In Nuno's case I act more like a father and rarely like a scientist or a Doctor. But from what I've seen it helps a lot in terms of behavior, socialization and depending on each case there is a very big gain in terms of speech, but in my son's day-to-day what I notice the most is the social part and the part of interaction. He's a bit withdrawn and what I'm looking for is for him to be calmer and more participatory. CBD has good results at this level.

Medical cannabis was approved in 2018 and the law provides for the training of health professionals. Have you had any training in this area?
None. But I think Doctors should be aware of this. There should be specific training in this area, which might even help to break down barriers and stigma. They should be concerned, because worldwide more and more children are being diagnosed with Autism and I think it would be a good approach for companies at that level. The amount of people in need of a differentiated therapeutic approach is huge, but unfortunately we know that the pharmaceutical industry operates very profitably. See how easy it was to find the Covid-19 vaccine, in less than a year they solved the issue.

How much do you spend monthly to get your child's CBD?
My son initially took an oil imported from England, recommended by my friend Neuropediatrician, full spectrum, but not everyone can afford £120 for a 10ml bottle of CBD. But beyond that, the big problem is that I was always anxious about whether I was going to receive it or not. Ordering from another country is not the same thing as buying at the store, there is always the risk of the order getting stuck in Customs.

And these 10 ml were for how long?
Depends on the dose, of course, but my son and I kept increasing it and it got to a point where I was doing 300mg a day, so it was about eight days or so.

Horses and hippotherapy were some of the therapies Nuno's parents tried to help with his Autism Spectrum Disorder

Eight days?!
Yeah, because it's 2400mg per bottle, but that's very variable, because from what I've read sometimes people go up to 600mg or more a day. If it's full-spectrum CBD at the dose, the performance and response are much better with fewer milligrams. It will depend on what the person has on hand, but it seems that purified CBD reaches a limit that even increasing the dose will not have results and may even be counterproductive. Then the full spectrum is more effective than pure CBD. It will depend a lot on each patient, but in my son it is more difficult to assess, because he does not speak. He understands everything we say, he has feelings, if we tell jokes he understands and laughs, but does not verbalize. He communicates through gestures and approximation, not through words. When he was a baby he used to say a few words, but then he lost that ability to speak.

When I gave you the imported oil, if each bottle lasted 8 days, does that mean you spent more than 500 euros a month?
Yes, exactly. Then it started to be more difficult because of the pandemic and now I have been content to give CBD from this cannabis store. I don't know if it's very reliable, but we have this problem, that's what there is.

What concentration does it have and how much does it cost?
It has 20%, a bottle costs €110 and lasts for 10 days.

Have you read what the label says?
It doesn't bring much information, it doesn't exactly have the same information that the drugs in the pharmacies have.

And did you realize that the label says not to ingest or inhale?
Yes, it's the usual. It's the way they found to try to overcome bureaucratic barriers, so to speak. I understand that they want to get rid of that responsibility and it was the only thing I could get in immediate terms. On the box it says it has 20% CBD, I hope it has CBD at least!

And how do you see this issue?
I think it's bad, because unfortunately things should be more clear, but it's the only way companies find to try to reach consumers. I don't think it's very suitable, but if they don't act, I act myself. It's the only way we have to get to the product, there's a lot of bureaucracy, a lot of excuses, which I don't understand. I don't understand, because if I'm going to say that it's a cosmetic or that it's a souvenir it can be sold, if it is for human consumption, it is no longer possible. It's hypocrisy. We are in the European Union but with totally different mentalities, laws and rules from one country to the other. The free movement of goods and products is all a joke, it's just theory, because here they block.

Nuno, 15 years old, in a hydrotherapy session

How would you explain to your fellow doctors, for example, that you are medicating your child with something that is actually not authorized?
I no longer try to explain. When we have a problem, we look for a solution, regardless of whether it is in a more or less certain way, more or less clearly. We often have to be hypocritical with those who are hypocritical with us, don't we? And the truth is that everyone knows that the pharmaceutical industry, the government and Infarmed are hypocrites until they can't anymore. We have to adapt to situations. As a father, if I'm told that diving in the waters of the Jordan River improves my son's problem, I might try it. Of course, always with a back foot and everything, but we try to do everything for the children, don't we?

Sure.
And I don't really have to give satisfaction to my colleagues. I believe in this and I have read several works published internationally with CBD, not just in Brazil, Israel and the USA. And I'm going forward, because if we don't start tearing apart paradigms and confront established things, we'll never go forward. I've already talked to doctors who don't know anything about this, like the Psychiatrist who medicates my son, I've already talked to my nephew who is also a Psychiatrist, to find out if there is anyone among his colleagues who uses it, or if he has any knowledge. Nobody has it, but just because you don't have that knowledge doesn't mean things aren't valid.

Even more, CBD is considered a food, which can have benefits, even at a preventive level.
Exactly. One of the times my son's CBD was held up at Customs, I was asked: “Is it for medication or for food?” And I replied: “You choose, which is easier. If it's easier to release as food, you say, I don't care”. One time, I complained. They sent the CBD back to the company and when they sent it to me the second time I received it at home with no problems. Unfortunately, in our country we also have the problem of small powers. If a person thinks they can decide, "I can send this back," they will, you know? They don't make people's lives easier, it's a lot of bureaucracy. But I'm fighting, one day at a time and getting to solve the problems little by little.

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[Disclaimer: Please note that this text was originally written in Portuguese and is translated into English and other languages ​​using an automatic translator. Some words may differ from the original and typos or errors may occur in other languages.]

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With a degree in Journalism from the University of Coimbra, Laura Ramos has a postgraduate degree in Photography and has been a Journalist since 1998. She was a correspondent for Jornal de Notícias in Rome, Italy, and Press Advisor at the Office of the Minister of Education. She has an international certification in Permaculture (PDC) and created the street-art photographic archive “What says Lisbon?” @saywhatlisbon. Laura is currently Editor of CannaReporter and CannaZine, as well as founder and program director of PTMC - Portugal Medical Cannabis. She directed the documentary “Pacientes” and was part of the steering group of the first Postgraduate in GxP's for Medicinal Cannabis in Portugal, in partnership with the Military Laboratory and the Faculty of Pharmacy of the University of Lisbon.

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Joaquim
2 years ago

Good afternoon, I'm Joaquim, I send my "condolences" in relation to this situation that goes through to acquire CBD and of course, all possible understanding in the case of Nuno and the autism he suffers from, I hope you can find a way fast and reliable above all in order to be able to fully enjoy, Nuno obviously, all the medicinal capabilities not only of CBD but also of THC, all the cannabinoids as in the flower, only in my opinion, it will be better for other cases. In relation to this I don't have enough knowledge to say for sure, but you are a doctor, you certainly see the improvement or not, of Nuno as he changes the “vial/dropper” which is the almost universal form, but without the Bula, without the real content, let's say, of what comes in the package described!
But I just want to let you know that there is a Good and Right way to know. I've even seen it in On Line stores in Spain!!
There are tests to verify all the cannabinoids present in the substance!
There are the same restrictions, I believe, in our country as if it contained THC or was a product to be used in the cannabis “industry”, hence the difficulty of access. But, I repeat, there is, yes, a way to know All cannabinoids, whether in the flower or in preparations, I believe!
I don't understand the “craziness” of those who stop CBD, because it's not CBD that is banned by law! Yes, THC! So this situation of being in Limbo between Yes and No, is at least and in part an abuse against the freedom of the Portuguese! Mainly after the State declaration, that's how I see it, that At Least, Medicinally, it would have its Use Protected, people with knowledge of the facts. But they seem to want to keep everything as before, without being able to have Medical Assistance, because that will be the biggest problem especially in cases like Dr and Nuno unfortunately!
I only ask that you try to find these tests, Dr., when you have them, always inform whoever is going to buy them, who has them and will check them on arrival, and if you don't have the content that is advertised, you will return it, with Legitimate Reason. You will thus be able to separate the wheat from the chaff and find an “honest dealer”, perhaps there will even be some empathy and they will start to deal with this matter with a closer attention to the consumer and even giving clinical indications. This, I repeat, are opinions and, things I saw, read and even bought things from stores, never CBD, but they even do COD, this to see that they have no problem being in the Open Market. But of course, as with seeds, there are warnings about use in the country you are going to, and to know the laws on this subject! Because they don't take responsibility, the seeds have it written on the package, I already saw, “Solo Para Colecísmo”/”Queda Prohibida Su Germinación”, in relation to CBD it will be better to do what is indicated, I believe.
Cumprimentos,
Joaquim

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