‘I live in constant fear,” says Maya Segev, a mother of three from Ramat Hasharon whose eldest daughter Nika, 14, suffers from Rett Syndrome.
“It takes a while for Nika to get used to new meds. It’s a bit of trial-and-error process trying to figure out which one will work best, and this isn’t great for her health or the mental stability of the rest of the family. She’s been using cannabis oil for two years now, which has been extremely helpful. I would love if we could continue purchasing it where we used to get it. With the new reforms, my daughter will have to go back to living the dangerous life she used to. I’m so worried.”
According to Dr. Dafna Azarzar, a mother of four from Kiryat Bialik, after the new cannabis reform goes fully into effect, parents will be allowed to purchase medical cannabis only from Super-Pharm stores – and not directly from growers, as they have been doing for a number of years now.
Azarzar is the CEO of a nonprofit organization called Ahava, a group of parents of children with disabilities, who work to pass legislation in the Knesset and deal with bureaucratic issues. Her 15-year-old son, Ilai, suffers from severe autism, as well as mental and physical disabilities.
We spoke with Azarzar about the reforms.
What is the big picture regarding the new reform?
The reform went into effect on April 30. Up until now, parents would purchase cannabis directly from growers, and we could shop around until we found the exact kind that helped our children. The new reform has limited the types of cannabis that are legal to grow, and only two types will be available through Super-Pharm, neither of which have helped my son and youngsters like him.
How many children in Israel have prescriptions for medical cannabis?
About 2,000. Most of them are children with autism, cerebral palsy [or with] severe epilepsy who suffer from daily attacks. And children with cancer. All of these children – the weakest members of our society – will suffer as a result of the Health Ministry’s reform.
How do the new regulations change how one can acquire a license for medical cannabis?
Previously, the first thing you needed to do to get a license was to try out three or four different types of psychiatric drugs and see if they helped you. If they didn’t, then you would go to a number of different cannabis growers and try each product until you found the one that’s most fitting for your child’s needs. This whole process could take up to a year or two.
But what has the Health Ministry done now? They’ve taken charge of this process. It’s obvious that this change was made for economic reasons and nothing else. Out of the 2,000 children who use medical cannabis, 1,600 of them receive no relief when they use the two strains that have been approved and are being sold by Super-Pharm. All 1,600 of these children will suffer unnecessarily.
One of the results of the reform is that many children who will no longer have access to the type of cannabis that benefits them will experience serious regression in their symptoms. Children with epilepsy will suffer extreme attacks and children with autism will go back to having intense bouts of anger. Cannabis greatly helps to relieve all of these symptoms. The children sleep better and are more relaxed when they’re taking cannabis drops.
Did you approach the Health Ministry with these claims?
I did – as a parent and as the head of Ahava. We sat with Deputy Health Minister Ya’acov Litzman and others. They listened to us and then we left the room. And that was the last contact we’ve had with the ministry. What power do I have against economic reforms carried out by the ministry? I’m just one person. Moreover, not only can I no longer buy the type of cannabis that helps my son, the price of the cannabis that is available has tripled. We thought in our naiveté that maybe they’d consider adding cannabis to the list of drugs covered by the health funds. Boy, were we off the mark.
What demands have you made?
That the status quo from the time before the reform be reinstated. I’m not interested in how much money the government will make from the changes. The only thing I care about is that my son and everyone else’s children receive the help they need. It appears that the Health Ministry has forgotten their real purpose: to protect the health of Israel’s citizens and to make sure that people receive the help they need. So many families will fall apart now. They have no idea how hard it is for parents to take care of needy children. Is it too much to ask that our children be allowed to live calm, happy lives like everyone else does? I’ve never heard of a country that refuses to help the weakest sector of society.”
“WHEN NIKA takes cannabis, she has much fewer epileptic seizures,” explains Maya Segev, a mother of three from Ramat Hasharon. “She used to have up to seven seizures a day. We suffer tremendously along with her during each attack. It’s really taken a toll on her siblings, too, to watch her suffer through seizure after seizure. We saw improvement in her situation immediately after administering the first drop of cannabis [oil] to her. Not only did she have fewer seizures, the severity of each attack has decreased, too, and her breathing was easier. It used to feel like an earthquake was erupting when she’d have a seizure. Now, with the cannabis, sometimes she has days with not even one seizure.
“One side effect of epilepsy is osteoporosis. Nika was being treated for this in the hospital with a very strong drug. As soon as we began giving her the cannabis, we saw an improvement in her motor skills. She had more strength to stand up and do her physical therapy exercises. She can take more steps on her own and her appetite has even improved. Her teachers tell us that she’s doing better in all of her subjects at school, too.
“I’m not holding out much hope that the generic version of cannabis that will be available through Super-Pharm will be of much help to her. Our plate is already so full. I can’t believe that we’ll have to deal with this now, too, on top of everything else.”
YAEL BRACHA, a mother of three from Tel Aviv, explained the importance of finding a specific strain that helps the individual child. Her youngest son, Yahli, 11, has epilepsy and is also “on the spectrum” of autistic disorders.
“Yahli’s been having seizures since he was five months old,” says Bracha. “When he tried a certain strain of cannabis in 2014, his seizures calmed down and he even began speaking a little. The past few years have been wonderful. But then last November, when the Health Ministry decided that our grower must shut down his business, we had to look for a new supplier, and haven’t found anything else that helps. In the meantime, Yahli’s seizures have gotten really bad and this has completely disrupted our family life.
“We requested permission to purchase cannabis from our previous grower, but our appeal was rejected. There are no exceptions, even for children who suffer from severe seizures. I guess they just don’t care. Israeli society has reached an incredibly sad place if it’s not willing to help its most needy children.”
“MY SON Omer, who is 12, was diagnosed with autism,” says Liat Kozac. “He’s non-verbal and low-functioning. Since he was five, we’ve been giving him psychiatric meds that were supposed to calm him down, but most of them didn’t really help and he’d have rage fits all the time.
“Two years ago we decided to try something new, and after a bit of trial and error we found two strains of cannabis that have really helped Omer. He has fewer rage attacks and it feels like he’s more with us now. My current prescription is up in September, so I’ll have to switch to a new one then, but I don’t have much faith that it will be nearly as effective as the one we currently use. Omer is starting junior high school in the fall and I’m not sure it’ll be a very smooth transition if we don’t have access to cannabis that will keep him calm.”
THE HEALTH MINISTRY responded to our request for information:
“The Ministry has improved the process for obtaining a license to use cannabis for medical purposes. From now on, customers can access a new and advanced computer interface to apply for a license to use cannabis for medical purposes. This interface enables both doctors and patients to input the required information and necessary documents directly to the system. After these have been checked and approved, patients will be able to print their license and the instructions and immediately go to their local pharmacy to purchase the cannabis products. Moreover, current license holders may request to renew their license or convert their current license through the new system and purchase cannabis products at the pharmacy.
“Alternatively, customers can continue attaining products through their current supplier for an additional period. Current licenses that have not yet expired can continue to be used. Licenses that were due to expire between January 1 and June 30 were automatically extended through August 31, without any need to request an extension, and will be accepted by suppliers until that date.”
ACCORDING TO recent reports, about 60% of cannabis patients are still receiving their medication from growers rather than pharmacies. Pharmacies say cannabis products must meet their quality guidelines – protocols that are not geared to marijuana – and will only sell a limited number of strains of cannabis. The addition of pharmacies as middlemen for buyers and the imposition of stricter quality controls has driven up prices. Some 64% of patients have experienced higher medical expenses following the reform. Additionally, the industry has been experiencing a shortage since the reforms were implemented last April, with suppliers and customers putting the blame on each other.
To combat these issues, the Health Ministry is implementing a further reform next month that aims to concentrate the purchasing of medical cannabis through pharmacies rather than the suppliers. As of September 1, any newly licensed growers will be allowed to sell their produce only via pharmacies, and will have to conform to the Good Manufacturing Practices (GMP) standard. Existing growers and distributors will be required to sell at least 10% of their product via pharmacies beginning in September, with the required amount going up by 10% each month. As a result, within a year, growers will be able to sell only via pharmacies. Beginning in January 2020, all medical cannabis products sold will have to meet the GMP standard. The distributors and pharmacists will also have to keep the ministry updated on inventory in order to assist with monitoring supplies. The updates will also further consolidate centralized governmental control over medical cannabis in Israel.