After his diagnosis, Tomer began taking antibiotics with the hope that they would heal the inflammation.
"I received very high doses of antibiotics for two years. It was a very difficult period for my body," he said. After a year and a half of treatment I could not leave my house. I had nine areas of the body that were bleeding intermittently. Due to the pain, it took 40 minutes to get out of bed. My mother would make sure that I did not bleed to death during my showers. I could not work and my social life ground to a halt. I had to learn how to live again."
Marciano set out to locate others with his rare condition via internet forums and made contact with two people suffering from the same ailment. They told him that thanks to the use of cannabis, the disease was in regression.
Marciano began to use cannabis as well and quickly discovered that it helped alleviate his pain and with an intake of 30-40 grams a month he has experienced a significant decrease in the number of outbreaks.
He set out on a journey to discover anything that can alleviate his condition. He set out for the US state of Colorado, where cannabis was legalized in 2014.
"Because of legalization, I had access to a wide variety of quality substances which enabled me to get a good picture of the effects of each strain," he said. "I went through dozens of dispensaries before I found the variety that was right for me."
Marciano discovered that a combination of smoking certain varieties of medical cannabis, together with the application of "Rick Simpson" oil (named for its discoverer) worked wonders for him.
"The oil has a very harsh effect on the body, but its healing properties are amazing… Within three and a half months of landing in Colorado, I was 95% cured and was able to fully function. By then I had decreased my intake of grass and decided to return to Israel in order to receive the treatment I need near my family and friends," he said.
But when he returned to Israel, Tomer encountered serious difficulties. "My application for medical cannabis was rejected. The Health Ministry insisted that I find conventional methods of dealing with my disease and provide an explanation why I need cannabis for a disease not yet sufficiently researched," he said.
"Since returning to Israel my situation has deteriorated. In Colorado I was almost entirely healed; I was at stage one, almost stage zero, of the disease, but in Israel I was again categorized as stage two.,"
Only after four years of struggle did he find a doctor willing to recommend prescribing him with 100 grams of cannabis a month, but the state only allowed him half that.
"What I had been taking per week in the US is what they allow me per month in Israel," he said. "I am forced to purchase cannabis illegally because I am not willing to become disabled again. Currently I am taking 130 grams a month, only 50 of it from the government. But those additional 80 grams make all the difference between sitting at home unproductive and being able to lead a normal life. At my last appointment, the doctor told me that I look the best he's ever seen me. I cannot allow myself to endure what I have been through again."
Over the last two years, Tomer has volunteered at a medical cannabis organization and begun studying plant sciences at the Hebrew University's School of Agriculture. "This is my way to affect change from within. This plant changed my life and now I want to help others change their lives."
In the seven years since the government legalized medical cannabis, it has become clear that it is not a passing fad. More than 42,000 Israeli patients hold a Health Ministry medical cannabis license for a variety of conditions including cancer, chronic pain, degenerative diseases and psychiatric conditions.
For most of these patients it is the difference between a manageable or normal life versus one of unbearable suffering. And demand is only rising as more and more research studies show the affectivity of medical cannabis with more and more diseases.
On the other hand, it is also clear that cannabis is not a magic pill and that it can have side effects.
But tens of thousands of patients who can benefit from cannabis to alleviate their pain need to fight the bureaucracy and established medical norms to obtain a license. They are often left with one option: turning to the black market or living a life of pain and suffering.
These are not drug addicts or recreational tokers seeking subsidies, but rather people who find themselves at the extreme end of the medical spectrum. Nevertheless, the state creates numerous hurdles for them.
In order to understand why, in a country which prides itself for being highly developed, tens of thousands of patients experience difficulty in obtaining the plant that can change their lives, we must understand the procedure necessary for obtaining medical cannabis.
The first stop in the process is obtaining a doctor's recommendation and sending it to the medical cannabis unit at the Health Ministry. The doctor must be a specialist in the disease the patient is suffering from. Family physicians cannot issue a referral. Thus the ministry eliminated the option of getting a referral from the doctor who knows the patient the best.
After all the necessary documents are received, a senior doctor reviews the application and decides whether to issue a license.
But the ministry's guidelines specify that cannabis only be a last resort, after all other medical options are exhausted. This means that even patients who clearly ought to be eligible to receive medical cannabis must first undergo other treatments, often with harsh side effects, for a specified amount of time before becoming eligible for a cannabis license. In other words: let's first eliminate all the conventional medical options before resorting to cannabis.
The abovementioned directive can often be absurd. Patients suffering from Crohn's disease, a severe gastrointestinal inflammatory disease, only become eligible for medical cannabis after eliminating the option of removing part of their intestines, a treatment involving considerable risk.
Patients suffering from chronic pain must first undergo a year of treatment at a pain clinic and "conventional" treatments involving severe side effects including the danger of drug addiction.
Moreover, oncology patients are only eligible for medical cannabis while undergoing chemotherapy and up to six months afterwards, despite the fact that many side effects caused by the cancer or the treatments can last for much longer.
Some patients have resorted to unusual solutions such as purchasing the required conventional medications for as long as required, often at considerable cost, but not using them, only in order to become eligible for medical cannabis.
Even after the application form is filled out and signed by a medical specialist, the medical cannabis unit only begins to process the request after all of the necessary forms are submitted.
Herein lies another difficulty: the department is so overloaded with requests that it is almost impossible to get a representative on the phone. Even one who does manage to avoid the busy signal will have to wait an excruciatingly long time before getting someone on the line. Even then their problem is not necessarily addressed. Representatives of the medical cannabis division often fail to provide answers to applicant's questions and can only give limited information regarding the status of a submitted application.
"As of today, we are assisting more than one hundred patients who don't know the status of their application," says Dana Bar-On, chair of the Medical Cannabis Association. "The system cannot deal with the tens of thousands of patients whom it is supposed to help."
"Many of the applications submitted get lost," says a senior pain physician. "Patients wait for weeks for an answer, only to discover that the forms they worked so hard to obtain have been lost."
The technical difficulties experienced by patients has been addressed in a report by State Comptroller Yosef Shapirol, which was published in June. "Since the establishment of the medical cannabis unit, hundreds of complaints have been submitted regarding its handling of applications," said Shapiro.
"The complaints reveal that patients face excessive bureaucracy when seeking to obtain medical cannabis. Many complaints are about lost or unaccounted for application forms, lost forms and considerable delays in handling submissions. Often, patients are not informed of the status of their application… 83% of complaints were found to be valid or were corrected following intervention from the comptroller's office."
Zohar Chaim, a patient suffering from severe headaches, describes the excruciating pain he endured before he began to use cannabis. But doctors insisted on prescribing him conventional medication instead, including morphine tha left him unable to function.
Until he obtained his medical cannabis license, Chaim would purchase cannabis on the black market for NIS 100 per gram (approx. $25), and he spent over NIS 8,000.
Even those who do get a permit are still not free to focus on their lives and healing. The Health Ministry requires that permits be issued for a period of six to 12 months, and are conditioned on close medical follow-up.
Application renewals must be submitted at least 25 working days before the license expires, so many patients are forced to deal with the bureaucracy every few months.
The bizarre ease of obtaining addictive drugs
One of the main reasons for the dismal state of affairs is the Health Ministry's contradictory role: on the one hand it is tasked with issuing medical cannabis licenses; on the other hand, it is also a gatekeeper for the state, which still considers cannabis a dangerous drug.
The primary — and legitimate — concern is that the cannabis will make its way into the black market. "We are very uneasy with the widespread use of medical cannabis, and definitely with non-medical cannabis use," Health Ministry Director General Moshe Bar Siman Tov told the Knesset Committee on Drug and Alcohol Abuse.
"We are responsible for public health and the nation's long-term health, and we see ourselves responsible that this substance goes from people we have given it to, to those who should not have it. We are working by the book, but I repeat: I am uneasy with how it works," he said.
Health cooperatives and doctors are also responsible for the obstacles in obtaining a cannabis license as pain clinics are intermittently closed.
The health cooperatives do not encourage doctors to submit the required forms. On the contrary, they often make it difficult and online block access to the forms. This may stem from an ingrained conservatism or the concern that lending legitimacy to cannabis treatment will lead to the costs eventually falling upon them.
"They fail to understand that patients suffering from amputations or post-traumatic stress disorder can cease to be a burden on the system for only NIS 370 — the monthly cost of cannabis," says a Health Ministry official.
Critics point out the absurdity that doctors can easily issue prescriptions for hard drugs, many of them addictive, without any supervision, while cannabis — a much milder, non-addictive drug — is so hard to obtain.
Most doctors in Israel support medical cannabis. A recent survey conducted among 80 pain specialists at Ichilov Hospital in Tel Aviv reveals that 63% believe that cannabis treatment is effective. Only five percent of doctors see no benefit whatsoever.
Most doctors noted that they encountered very light side effects as a result of cannabis treatment, and only 12% believe that cannabis is more harmful than opiates when dealing with chronic pain. "There is good reason to consider giving cannabis at an earlier point of treatment," said Dr. Haggai Sharon, a senior pain specialist at the hospital.
But despite the wide support among doctors, in practice, many hesitate to prescribe medical cannabis to patients. Only a limited number of physicians regularly issue cannabis referrals and the queues to see them are very long. One patient said that she received an appointment for March 2020.
Many patients have been subject to suspicion and humiliation when asking for a cannabis referral. "The approach to pain is very medication focused," says Zohar Chaim. "Instead of focusing on my suffering, they push medications that don't help. One doctor even told me to go purchase cannabis on the black market."
In order to help standardize the issue, the Health Ministry initiated reforms aimed at setting standards for growing and producing medical cannabis.
"Although it is not listed as a medication, we want to make the use of medical cannabis similar to conventional medication," says Yuval Landshaft, director of the medical cannabis unit in the Health Ministry. "A patient will receive a prescription from his doctor and take it to the pharmacy where he will receive high quality cannabis, just like medicine… not like stuff which is produced in backyards and basements."
Last April, the ministry began a pilot launch for selling cannabis at pharmacies. But although it was meant to include some 20 pharmacies and aroused a lot of public and media interest, in practice only a few pharmacies took part and no more than 200 patients participated.
Another criticism of the planned reforms is the price. Currently, patients pay a set price of NIS 370 a month regardless of the amount they were prescribed. But starting soon it is set to be sold for NIS 120-140 for 10 grams. Patients requiring more than 50 grams will be paying significantly more. The street price for cannabis is between NIS 70-100 for one gram.
In response to criticisms related to the price, Landshaft says: "Clearly a set price that disregards quantity is problematic and encourages use even without medical justification, therefore it was decided to base the price on quantity.
"About 85% of patients use 40 grams or less and will not be paying more than they currently do… Regarding the 5% of patients who require a large quantity, the Health Ministry is seeking a solution."
According to the ministry, the reforms are set to be implemented doing the first quarter of 2019 and "will solve many of the problems raised in this article." They also said that more than 100 doctors will be licensed to issue cannabis to patients and that more patients suffering from various conditions will become eligible.
But many doubt that the reforms will be implemented as scheduled. Patients who are suffering seek a solution now and not in a few months. "The physician's oath is toward the patients, not the drug companies," says Zohar Chaim. "I want everyone from the ministry who is involved in the matter to put themselves in our shoes, to imagine they have a massive migraine and they have to wait months for medicine…"
'We are doing our best'
The Ministry of Health said in response: "Regulation of medical cannabis as it is currently performed in Israel is the first of its kind in the world, and progress must be made with great care and responsibility. This is a complex and unique process.
"Thanks to the intensive work of the ministry and the cannabis unit, there are more than 42,000 patients in Israel with a cannabis license —the highest in the world in relation to population.
"The fact that the ministry seeks to better the lives of patients does not meant that any amount of cannabis will be issued to whoever wants, but rather that each case will be examined on its merits. Applications for a license are constantly increasing and nevertheless, they do their best to keep up.
"It is true that lately there has been a large backlog but we are working to speed up the process and make it more efficient. Some of the workload has been transferred to an outside firm and a computer program will be available for patients to upload their medical forms. After they are checked, the patient will be able to print out their own license and take it to the pharmacy. In addition, 150 doctors will be qualified to issue cannabis licenses themselves for a small fee (NIS 290).