Ilegal

You have reached ANVISA

the Brazilian National Health Surveillance Agency.

Good afternoon, Aline speaking. Who am I speaking with?

Good afternoon, Aline. My name is Katiele.

ILLEGAL

I've ordered something from the US, but it hasn't arrived.

Instead, I've received a telegram.

It asks for the product's name and manufacturer.

Also, it requires a statement containing the use

and the purpose of the product I'm importing.

It says that the statement must contain

all the required information.

But actually, they're not requiring any information.

What kind of product is it?

It's a dietary supplement.

If it's not a restricted product

or anything that requires a prescription...

It's a controlled product.

So a doctor or anyone enabled to prescribe it

will have to certify that you need it.

Yes, I already have a statement.

I'll read it to you, OK?

"Anny Bortoli, 5 years old", this is my daughter.

"She has a very rare disorder."

"She displays a psycho-motor disorder"

"as a result of a brain disease."

"Among the symptoms she has seizures."

"It's resistant to every treatment available in the country."

"I hereby justify the request for cannabidiol"

"based on what was said above", which is her current situation.

When we found out about the CBD and decided to import it,

we knew it came from Cannabis sativa,

and for this reason, it was illegal in the country.

But the agony of seeing my daughter having seizures every day

was so big that we decided to face it

and bring the medication no matter how,

even if we had traffic it.

And that's what we did.

That's the word: trafficking.

Anny was planned.

We planned on having her since the first one was born.

So, when she was born, we were very happy,

but I knew there was something about her eyes.

Then, in typical mother-and-daughter moment,

when you are staring at your little baby,

when you can smell their scent...

I was holding her when she had

her first seizure.

It was a mixture of fear and astonishment,

because that should not be happening to me.

To my daughter. To my family.

It didn't seem real, you know?

She didn't move she didn't smile...

She looked like a little doll...

...quiet, static.

When she was three, she was able to walk.

She could actually stand up and take confident steps.

That was a very important moment,

because, at the age of three, she could finally walk.

The whole thing was a moment of joy.

But right after that...

...she began to have more aggressive seizures,

and due to the syndrome and the attacks,

she started to lose her abilities.

And after four months, she had already forgotten

everything she had accomplished over three years.

I think it was one of the saddest moments of our lives.

But despite the sadness, we never lost hope...

...that one day she would be able to recover her abilities.

And it was precisely this feeling of hope

that made us search all over the world

for something that could really help her.

And what we found was CBD.

Cannabidiol is a compound that is found in Cannabis sativa,

the marijuana tree.

It doesn't have any psychoactive effects and it's responsible

for some of the species' medicinal properties.

When she was 35 days old, she started having seizures.

And that's when our fight began.

It was the acceptance phase, I would cry a lot,

I would go to class crying and I would come back crying.

I would think: "I have a special daughter".

It was a mission, and I knew it.

When she was born, I thought: "She is perfect".

But after a month, she had a seizure,

and we didn't think it was something serious.

So you start to look for a solution.

You start to go to spiritual centers

and try every option there is to try.

It took us two and a half years to diagnose it.

The doctors used to say: "It could be this or that".

"You have to take her abroad."

I have always dealt with her situation better than him.

He suffers quite a bit more than I do.

One night, he suddenly woke me up and said:

"You know, there is a girl that has been using"

"a medicine made from marijuana,"

"and she has achieved great results."

"It seems that, within 15 days, the seizures have stopped."

He was so excited, and I was still sleeping.

We had already tried all kinds of medication.

Nothing worked, and we were feeling depressed.

Suddenly, you find someone in the same situation,

who found a new drug that has been working.

I looked at it and saw that it was working.

The whole cannabis and CBD thing,

I had no idea that people could use

one of the compounds of the tree to produce medicine.

I never had any prejudice towards marijuana,

so, for me, it didn't seem so complicated

as it would seem to other people.

It was a relief to know that in the US there was

this little girl who had been using it

and the medicine was actually working.

Then, you start to think:

"If anyone wants to sue me, go ahead."

Katiele is much like me.

She laughed right away and took it with humor.

She started to follow my instructions.

I didn't quite know it worked over there,

but when I told her the news, I sounded like an insane person.

"Hey, people are giving marijuana to this little girl and it's working,"

"do you want to try it as well?"

What we were told when we were children, is that

this is a drug, so you have to keep away from it,

it's evil.

This was the impression I had.

After trying everything and nothing worked,

the possibility that this could help

puts and end to any sort of prejudice.

Even if it's something bad, in theory.

In the beginning, I didn't believe in it,

but the actual consequence,

the results from using it were excellent.

We were given a contact in the US.

This contact would make the purchase,

receive the product, hide it in a box,

and send it to Brazil.

We would receive it at home, through the mail.

As soon as we realized it was working,

we started to look for a way to buy it again.

This time, the package disappeared.

It was held.

The customs sent it to ANVISA,

which soon after, sent us a telegram.

You have reached ANVISA,

the Brazilian National Health Surveillance Agency.

Good afternoon, Camila speaking. Who am I speaking with?

Good afternoon, Camila, my name is Katiele.

Look, Camila, here's the thing.

I have imported a product

and I received a telegram...

I need to speak with someone from ANVISA who may help me.

I'll be honest with you: I don't know where this product is.

I don't have much time, I need this product.

I won’t read the regulation again

and won't contact you again either.

It doesn't make sense. I ask you for an explanation

and you tell me to read the regulation I don't understand,

and then you tell me to call you back.

It's easier if we cut all this bureaucracy:

I'm already talking to you and I don't know the regulation.

So put me in touch with someone who can tell me

what I can do to buy the product I need.

Ma'am, all this information was already given to you.

This is how we proceed.

Will I have to go through this every time I import?

Will my daughter have to stay at home convulsing?

She'll keep having 60 seizures every week?

I don't know if you did the math,

but it adds up to one seizure every two hours.

How much will I have to wait to have this product

after answering the telegram?

That's why we're telling you to contact the post office,

because the product is being held there.

OK.

So you're telling me you can't help me

and I'll have to go to the post office?

To the post office, yes.

Can I help you with anything else?

I think so, but you're telling me different.

Alright, then. Thanks anyway.

It's alright.

Its alright.

That's it, it's OK.

A seizure is something that...

When you see it for the first time,

it seems the person is about to die.

So, for a mother,

it's like seeing their child dying every time.

Regarding epilepsy cases that are more aggressive,

you will often see the child's development being affected.

I always go this way.

Both, child and mother, are traumatized

from constant visits to hospitals or ERs.

At this moment, the family takes the responsibility for this.

I understand very well, because

you try to put yourself on their shoes.

And the mother is forced to take a leap in the dark.

This worries me,