Despite years of determined campaigning by patients and their families, medical cannabis remains out of reach for many people. Aisling Hudson explains how access to this vital medicine is being opened up at a snail’s pace.
In July 2016, Gino Kenny introduced the Cannabis for Medicinal Use Regulations Bill, which was debated but later lapsed with the dissolution of that Dáil and Seanad. In October 2016, Vera Twomey succeeded in having Charlotte’s Web CBD oil prescribed for her child Ava. The oil was effective, but Vera knew THC was the most effective for her daughter’s condition, a rare form of epilepsy. THC was still banned.
In November 2016, Vera embarked on her first walk from her home to the Dáil to demand THC for her child. Simon Harris, then Minister for Health, interrupted her protest after the first day and offered a meeting. The meeting resulted in the Minister for Health requesting a report by the Health Products Regulatory Authority (HPRA), evaluating the benefits and risks to public health from introducing medical cannabis.
In January 2017, HPRA published their report outlining three qualifying illnesses for the new Medical Cannabis Access Program (MCAP) and endeavouring to find various products for supply in the Irish market. This news was welcomed by many, but for Vera and Ava, it was not soon enough. In February 2017, Vera started out on her walk again and made it to Dublin. The Minister established an expert reference group to develop MCAP, and in April, several legislative measures were published, and the Misuse of Drugs Act was amended to allow MCAP to operate.
In April 2017, Vera Twomey, along with Gino Kenny and Luke Ming Flannagan, went to Barcelona for medical cannabis for Ava, but the medication was seized in Dublin. In June 2017, Vera moved to Holland with Ava, and she began CBD/THC treatment and was prescribed Bedrolite, a product unavailable for use on the Irish market until July 2021. Ava’s seizures stopped. In December 2017, Ava and her mother and father eventually moved home and were reunited with their other children due to the granting of a ministerial licence by the Irish government. A ministerial licence allowed Ava’s medicine to be collected and brought through customs on behalf of Ava. Between December 2017 and April 2018, Ava’s medicine was paid for privately by her family, but after this time, the medicine was added to MCAP and was reimbursed by the Irish state. From July 2021, the state paid for the medication upfront. Ava was seven when she eventually got access to THC. Earlier intervention would have been preferable. Ava died in May of 2023, aged 13.
In June 2019, the legislation allowing the MCAP five-year pilot to operate was signed. Since then, six products have been made available: three oral solutions, one capsule-type product and two types of flower. Just 50 people have accessed MCAP to date, and 70 have accessed cannabis under a Ministerial licence. These are extremely low figures because MCAP is so restricted. Aside from needing a consultant willing to prescribe cannabis, the patient must have tried all other drugs on the market first and must meet one of three conditions which are:
- spasticity associated with MS;
- intractable nausea and vomiting from chemotherapy; and,
- severe refractory epilepsy that is treatment-resistant
The same products are available for any illness, via a ministerial licence. For this, a GP must apply to prescribe cannabis under the licence, and a consultant should oversee the patient’s treatment. Unfortunately, finding medical professionals is the biggest hurdle to overcome for most patients. Firstly, the waiting times for a first-time consult are among the longest in the Western world. Secondly, a register for consultants willing to prescribe, or work with, patients under a Ministerial Licence or MCAP has never been created, and professionals are few and far between. Just because an expert prescribes for one patient does not mean they will do so generally.
Even if a patient finds a GP and consultant to work with, the process is complex. Each month, the government department dealing with controlled drugs sends an email requesting confirmation of the following delivery. The patient then contacts the pharmacy in Holland personally, uploads the new prescription, waits for an invoice and link, and makes the payment. The Irish government collects and delivers the parcel. The patient can opt for another person to receive it generally, and then one of them must be there when it arrives. It often does not arrive when it should, leaving people waiting, taking unnecessary time off work, or missing delivery. A patient will know their licence has been granted when the first email from the controlled drugs department lands in their inbox, often their junk mail. There needs to be a coordinated effort to help patients.
Let me illustrate the out of pocket cost by way of an example. A woman, suffering from chronic physical pain and related depression, with a Ministerial licence for Bedrocan flower, pays €8.33 per gram. Her first prescription, for one gram a day, costs €250 per month. Her dosage was due to double, but because she also buys cannabis on the black market, she continues on the minimum dosage. Bedrocan does not alleviate all of her pain, but continuing with her prescribed product allows her to drive while on cannabis, if not impaired, and ensures her home is secure against police raids and prosecution. This woman would consume up to five grams per day, and different strains during each day because her pain is extremely complicated. She pays for it all out of pocket with the legal product costing slightly less than the street cannabis, but less effective. If this woman had access to various legal strains at €8.33 per gram, her medication would cost €41.65 per day, €291.55 per week, and €1166.20 per 28-day month.
Yet cannabis can be safely and cleanly produced for less than €2 per gram, at home by a patient or a caregiver, if there are no added risks. Recent reports that a clinical test of the Bedrocan product revealed the “22% THC” guaranteed on the label was 20%. Other reports claimed their product arrived mouldy. Home-grown flowers would work out at €10 per day, €70 per week and €280 per month, and can easily be checked for contaminants, mould, and strength.
Meanwhile, the MCAP five-year review was reported to have happened last year, with recommendations promised this year. We need the inclusion of chronic pain among the qualifying symptoms, and for GPs to be able to prescribe, and for homegrown products to be included. Because, like everything else, access to medical cannabis is affected by money and social class.