Patients reject giving up cannabidiol, target of CFM resolution

In 2012, the car in which Tabata Tatiane Gomes Ferreira, now 41, was in overturned on the Ayrton Senna highway, in Mogi das Cruzes, in the metropolitan region of São Paulo. The accident caused a serious injury to her neck, as well as fractures to her face and femur, and resulted in incomplete quadriplegia.

Tabata was in bed for a long time and underwent several surgeries, four of them on his neck. He had physical therapy sessions and was able to get out of the wheelchair. Today, he hardly needs crutches anymore. But she suffers from chronic pain and spasticity (muscle tension and stiffness), as well as insomnia, depression and anxiety, conditions she treats with cannabidiol (CBD), one of the substances in cannabis.

“Today, I lead a practically independent life. I still have physical limitations, so I have some difficulty walking, climbing stairs, but I already do everything on my own”, says she, who is a musician. “Cannabidiol helps me a lot. It helps with muscle relaxation, spasticity is almost zero. Especially in the cold, when the muscles start to stiffen, I can fall easily if I’m walking outside and the temperature is uncomfortable for me.”

She started using CBD in 2016. Aside from the reported benefits, Tabata says from the start she didn’t respond well to conventional medications, which primarily attack her digestive system. “I can’t eat very well, I’m always very underweight. The treatment helps to open up my appetite a little more”, says she, who also consumes cannabis in natura.

Although the new CFM (Federal Council of Medicine) resolution on cannabidiol further restricts the prescription of CBD in the country, Tabata, who is not covered by the rules of the new standard, says she has no option but to follow her treatment.

“I can’t give up the quality of life I’ve acquired”, she says. “I’ve been doing very well these last few months, without any pain. cannabis is what gives me this guarantee of quality of life, I am closed with the cannabis until the end. It’s a survival instinct.”

Élina Monteiro, 40, mother of Hugo, 5 years old, has the same position, who since the age of six months has suffered from seizures caused by polymicrogyria, a malformation of the cerebral cortex. The child, who has had 80 seizures in a day, has been on cannabidiol treatment since 2019 and now goes days without a seizure.

Recently, however, after an attempt to withdraw CBD to change the treatment, at the professional suggestion, Élina’s son spent eight days in an ICU (Intensive Care Unit). There were 23 days of “uncountable” seizures until admission, says the mother.

“It was the worst experience we had, the boy was dying. Until we woke up to the reality that it was the [desmame do] cannabidiol, Hugo was already in the ICU. He arrived practically dead from so much convulsive crisis. Today, he has a severe encephalopathy that is a consequence of that”, says the mother. “Gradually we started taking cannabidiol again, still in the hospital. Soon the answer came, and it’s been 40 days since we’re back home.”

A resident of Varginha, in Minas Gerais, she says that at first she resisted accepting CBD treatment. “We tried everything, and nothing worked. When the doctor mentioned cannabidiol, which was the last option, I cried. I cried because there was a prejudice inside me. In my small head, with so little knowledge at that moment, I thought: ‘Will my son use marijuana?’. It took two months for me to admit it. I didn’t see cannabidiol as a form of medical treatment, for me it was a drug”, he recalls.

“After almost losing my son, I know that returning to cannabidiol treatment was essential for Hugo’s life. My son is, indeed, dependent on cannabidiol.”

Under the new CFM resolution, which restricts the prescription of cannabidiol to the treatment of children and adolescents with epilepsy refractory to conventional therapies for Dravet and Lennox-Gastaut syndromes and for tuberous sclerosis complex, doctors cannot prescribe CBD for boys like Hugo. Not even for girls like 15-year-old Letícia, diagnosed with West syndrome, a rare condition that causes severe epileptic seizures.

Letícia’s mother, psychopedagogue Claudia Onofre, 53, says that her daughter has been using cannabidiol for five years. She says she was quite scared when she heard about the new CFM resolution.

“She had 70 seizures a day. The seizures mess with her motor coordination and take her out of orbit, she is absent, she doesn’t connect with our world. see,” he says. “The lack of medication can lead her to strong and recurrent attacks, and it hurts to say that, but she can die.”

“Her cognitive skills are extremely compromised. She is a 15-year-old girl, but mentally a sweet and affectionate baby. With cannabidiol, she has improved a lot. If she is thirsty, today she takes her little cup and drinks water, she also eats properly, no gets sick. She creates, as much as possible, an independence, has a better cognitive development, doesn’t get prostrate.”

The list of benefits attributed to the use of CBD by Tadeu Di Pyetro, 71, is also extensive. After unsuccessful attempts to treat intense pain caused by herniated discs and fibromyalgia, a disease that affects muscles and joints, the actor started his treatment with cannabis medicinal product and says that, since then, he has regained his quality of life.

“Because of fibromyalgia I had pain even when I was lying down. Knees, hips, everything, a horrible thing. I started to ‘buy a pharmacy’ every month, heavy pain medication, and it didn’t work. Apart from the side effects”, he says. “Cannabidiol was essential for me. The pain has improved a lot and today I can say that I got rid of dozens of drugs, dozens indeed. I also started to sleep better, I have chronic insomnia for over 20 years.”

Even with the difficulties that may arise from the new CFM resolution —this Thursday (20), after pressure from the Public Ministry and various entities, the entity announced the opening of a new public consultation on cannabidiol—, Di Pyetro says that nothing will bring you back to your previous medication.

“I will look for [CBD] wherever you have. I won’t give up. It is my right as a citizen to take care of my health. I have a wife, I have a 96-year-old mother, I have a son. If I don’t take care of myself, I will create a very bad situation for my family, everyone will have to take care of me. I was almost immobilized, I had no movement. Can you imagine an actor who can’t use his body?”, he asks. “If I say I’m going to follow this orientation, I’ll be killing myself. It’s a matter of survival.”