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Families to gather at Parliament to condemn three-year failure of medical cannabis policy

Patients have been faced with a series of obstacles in their quest for access to NHS prescriptions

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Parliament: Families gathering with photos of their children at government buildings
Families have continued to campaign for NHS access since the law changed in 2018

Dozens of parents whose children are suffering from severe and rare intractable epilepsy will gather at Parliament to condemn what they describe as a “failure” of Government policy.

It has been three years since medical cannabis was first legalised in November 2018, yet parents across the UK are still facing difficulties with NHS access.

There are only three NHS prescriptions issued for the type of medical cannabis that has helped to transform the life of then six-year-old, Alfie Dingley.

The families, many of whom campaign under the End Our Pain banner, are forced to pay privately for their medicine which has proved to be transformative for their children. The children’s cannabis-based medications have drastically reduced their seizure rates and improved their quality of life. However, the cost of the medications has led the families struggling to raise up to £2,000 a month to treat their children.

Parliament event

To mark the anniversary, every MP has been invited to attend a parliamentary event to highlight the ongoing crisis. The parents will also display a digital poster van outside Parliament which will show the physical transformation of many of these children since they started taking medical cannabis.

The families will also walk to Number 10 Downing Street to directly appeal to the Prime Minister, Boris Johnson.

Joanne Griffiths, whose son Ben is still denied an NHS prescription and who helps coordinate the other affected families, said “Our families are at the end of their tether. We have done everything we can possibly do. We have marched, petitioned, lobbied Parliament and met with Health Ministers countless times, yet three years on we still cannot access the NHS prescriptions for the medicine our children are reliant on.”

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She added: “In 2018 we thought our problems were solved and that the Government would support our children. Yet here we are in 2021 struggling both financially and emotionally and continuing to be passed from pillar to post by both the Government and the NHS. As parents, all we want is to keep our children safe.”

Hannah Deacon, mother of Alfie Dingley said: “My son is lucky enough to be one of only three children in the UK with an NHS prescription for the type of the whole plant extract medical cannabis that has been life-transforming in cases of paediatric epilepsy.”

She added: “From having up to 150 life-threatening seizures a week, he has now gone over 500 days without a single serious seizure. Every child with severe intractable epilepsy deserves this opportunity. That’s why I am continuing to call on the Government and the NHS to work to solve this crisis. It is a total injustice that three children have access to this medicine, while others do not know when their money will run out.”

Parliamentary protest

In the last three years, the families have been faced with a series of obstacles in their quest for NHS prescriptions, including the failure of an initially encouraging internal NHS review published in August 2019.

These difficulties have persisted despite recent clarification from NICE,  following a threatened high-profile legal challenge from one family, that there is no recommendation against the use of whole plant extract medical cannabis products in appropriate cases of paediatric epilepsy.

Campaigners have presented a number of temporary solutions to tackle the growing crisis including interim funding of private prescriptions, the establishment of an access fund and the commissioning of an alternative observational trial. This would help the families to access cost-free medications but so far, this has not been accepted but by the Government. The Government have failed to offer any other solutions.

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Tonia Antoniazzi MP, co-chair of the All-Party Parliamentary Group for Access to Medical Cannabis Under Prescription, commented: “The situation we find ourselves in today is a complete and utter disgrace. The Government have failed to help the very children they pledged to support back in 2018. As co-chair I have written to the Prime Minister and the new Health Secretary Sajid Javid and have received no reply. Three years have passed since the law change. These children do not have time to wait a day longer. The Government have the power here to make a positive change and for every second they choose to do nothing, lives are needlessly being put at risk.”

Cannabis Health News will be joining the families at Parliament to highlight the failure of government policy and ask for better NHS access. You can follow our coverage on our Instagram and Twitter

Advocacy

US Congresswoman speaks out about how cannabis helped her depression

Nancy Mace spoke out about using cannabis to help her depression after experiencing a traumatic event as a teenager

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Image credit: Nancy Mace/Instagram

A Republican congresswoman who has proposed a federal bill to legalise cannabis has spoken out about her experience using cannabis to combat depression.

Nancy Mace, a republican politician from South Carolina appeared on Fox Business’s ‘Kennedy’ show to talk about the bill which would legalise cannabis but would also focus on veteran access.

It also includes expungement for non-violent cannabis crimes and imposes a revenue tax that would support reinvestment into communities hurt by the war on drugs.

Bill: A banner for always pure organics

The bill titled the States Reform Act would federally legalise and tax cannabis has been proposed ahead of competing Democrat proposed bills. While the bill was originally proposed in July, Mace shared her story after officially filing the State Reform Act in November.

At the end of the discussion, host, Lisa “Kennedy” Montgomery asked the congresswoman if she smoked cannabis.

Nancy replied: “When I was 16, I was raped. I was given prescription medication that made the feelings I had of depression worsen, and I stopped taking those prescription drugs and I turned to cannabis for a brief period of time in my life.”

She added that she believed her experience with cannabis made her more sympathetic to veterans who may use cannabis for conditions such as post-traumatic stress disorder (PTSD).

Bill protection for veterans

The congresswoman explained that the new bill is “particularity protective of veterans, ensuring they are protected, not discriminated against and that the US Department of Veteran Affairs can utilise cannabis for their PTSD.”

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She added: “When I talk to vets and I see that pain, it hurts because I felt that pain before in my life. Veteran suicide, we see every single day.”

One other provision in the bill is that cannabis would be under the Treasury Department’s Alcohol and Tobacco Tax and Trade Bureau (TTB) instead of the Food and Drug Administration (FDA). The FDA would have some involvement similar to its current control over the alcohol industry.

Bill history

Mace has already won an exception for rape and incest victims in a fatal fetal heartbeat bill. She mentioned her history when it came to proposing that bill in 2019.

She said: “I’ve had family that have overdosed from hardcore opiates and prescription drugs. And I’ve mentioned part of this in 2019, at the time I got the exception for rape and incest in the fetal-heartbeat bill I told my story about being raped when I was 16, but I’ve never said this part publicly before: I was prescribed antidepressants afterwards, and it made my feelings a lot worse. And so I started using cannabis for a brief moment, for a time in my life. It helped me. It cut down on my anxiety and helped me get through some dark periods.”

 

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First patient set to receive cannabis products on Ireland’s MCAP programme

CannEpil is the first drug available through the programme but has yet to be prescribed

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Ireland HSE offer medical cannabis
CannEpil was announced as the first drug to be made available through the programme

Earlier this year, the Irish Health Service Executive (HSE) has announced that the first cannabis-based products will be available through the Medical Cannabis Access Programme from mid-October.

Despite an update from the Irish health service (HSE) and Health Products Regulatory Authority (HPRA) that CannEpil would be prescribed by the middle of October, the first prescription has been delayed.

People before Profit TD for Dublin Mid-West Gino Kenny tweeted that the first prescription should be available from next week.

The HSE has yet to confirm that the products will be available from next week but says they would not be aware until the consultant neurologist has issued claims at the end of the month.

In a statement to Cannabis Health News, a press officer at the HSE stated: “The HSE has registered three patients under the MCAP in recent days. We would not be aware whether the consultant neurologist has proceeded with prescribing for an individual until claims were submitted from pharmacies at the end of the month.”

He also raised the issue in the Dáil earlier this month to Taoiseach, Michael Martin.

“Many families would have been very joyous during the summer when the medical cannabis access programme was to commence. But sadly, in a PQ response today, not one patient has been given access thus far. That is a huge disappointment to those families that this treatment could make life-changing benefits,” he said.

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“So what do you say to families that feel let down by the program and now they have to look at other treatments and probably getting no treatment at all?” He asked.

Michael Martin replied that a lot of patients have been facilitated by the original ‘imported license’ but he was unsure as to why patients had not availed of the MCAP. He promised to follow up with the Minister for Health, Stephen Donnelly of Fianna Fáil.

Gino announced changes to the Cannabis Regulation and Control bill that he is due to submit. It will now take place next year with a focus on production and consumption for personal use.

HSE committee meeting

In a joint committee meeting held in September, CannEpil was announced as the first drug to be made available through the program from mid-October.

Ireland’s Health minister Stephen Donnelly announced funding for the Medical Cannabis Access Programme (MCAP) in January, almost two years since the legislation was signed off in June 2019.

The programme will offer access to cannabis-based medicines to people living with one of three qualifying conditions. These include intractable nausea and vomiting associated with chemotherapy, severe treatment-resistant epilepsy and spasticity associated with multiple sclerosis (MS) where patients have failed to respond to authorised treatments.

The meeting saw officials from the Department of Health and the Health Products Regulatory Authority (HPRA) outline the current state of the MCAP programme and the Ministerial License system.

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The suppliers of two products, CannEpil and Tilray are said to have confirmed their prices to the HSE, but Tilray has yet to announce its availability date.  Two more cannabis-based products have been added to the schedule but suppliers are not thought to have current plans to supply the Irish market.

Morris O’Connor, the assistant national director of primary care reimbursement, announced that two additional products were expected to be added to the schedule in the coming weeks and that the programme may be extended for longer than the initial five year pilot period.

He stated: “There are currently four cannabis products on the schedule and two more to be added to schedule one of the regulations in the coming weeks. I understand that one of the products in the schedule namely CannEpil is expected to be available in October, subsequent to the introduction of the necessary legislation.”

According to Lorraine Nolan the chief executive of HPRA, since the MCAP regulations came into force in June 2019, 34 applications have been made for cannabis-based products.

Of these four cannabis oils have been placed in schedule one of the regulations, and two dry herb products have completed the final HPRA review and are awaiting a ministerial decision. Five are currently under active review.

Nolan commented: “The first cannabis-based products are expected to be made available to Irish patients through MCAP in October 2021. Once these are accessed by Irish patients, the HPRA will receive any reports of suspected adverse events and review them for any signals of concern regarding the safety of the product.

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“The HPRA will also have a role in investigating any quality issues that may arise and coordinate any action that might be subsequently required.”

Doctors are asked to register patients who may benefit from this treatment to the HSE including the condition they are being prescribed for.

The HPRA will be monitoring patients for adverse effects over the coming weeks once the medication is available.

The MCAP programme has been criticised by patients who are still waiting for access to products despite the introduction of the scheme in 2019 under then Minister for Health, Simon Harris.

O’Conner also highlighted that 192 ministerial licenses have already been issued for 67 individuals who access medication from the Netherlands.

In July a direct funding scheme was announced to remove the need for patients to pay for these prescriptions up front and then apply for reimbursement from the Government.

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Irish politicians receive cannabis in mail to mark National Legalise Cannabis day

The letters outlined the reasons why legalising cannabis in Ireland needs to be a top priority for government officials.

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Irish: A banner advert for National Legalise cannabis day

Two hundred Irish TDs received a letter outlining the reasons for cannabis legalisation and a roll-up in the post sparking an investigation

The cannabis was sent by An Póst by leading cannabis activists to mark National Legalise Cannabis Day in Ireland. The cannabis was accompanied by a letter outlining ten reasons why cannabis should be legalised and made accessible. Cannabis activists including Cannabis Activist Alliance, ReLeaf CBD Café, and Martin Condon from the podcast Martin’s World shared images of the letters online before sending them to ministers.

Two hundred letters containing cannabis roll-ups and edibles were sent to ministers including the President of Ireland, Michael D Higgins. A further forty were sent to members of the media and senators. Mary Lou McDonald of Sinn Fein was even sent a tricolour roll-up.

In a statement online, those involved encouraged other cannabis consumers and activists to get involved in the action.

“To mark the 20th anniversary of this event the Martins World Podcast, The Cannabis Activist Alliance and the ReLeaf Cafe have teamed up to recreate this event. Cannabis containing joints will again be posted to every TD and Senator in Ireland. With the joint, we will include a letter about the campaign and 10 reasons why Cannabis prohibition should be ended (there are thousands to choose from). We encourage anyone who wants to get involved to do so. It will only cost you the price of a stamp and envelope.”

Some of the benefits listed in the letters included the creation of jobs, open access for patients and researchers, the end to the discrimination faced by patients and also the protection of minors with the introduction of regulation.

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Irish cannabis market

While the letter highlighted the reasons why cannabis should be legalised in Ireland, it also gave a stern warning about the dangers of buying cannabis from an unregulated market.

“As this product was sourced from an unregulated market, you as a consumer have very little protection. There is no guarantee that this joint contains any cannabis. If it does contain cannabis you as a consumer have no idea as to the potency of the cannabis. This makes dosing incredibly difficult and could put you at risk.”

The action has sparked an investigation by Irish authorities after scanners at the ministerial buildings failed to recognise the substance. It was reported that nearly all of the Green party received a letter along with members of Fianna Fáil and Fine Gael.

Irish ministers response

Most of the ministers have not confirmed if they have or have not received the letters. However, Cathal Crowe, a Fianna Fáil TD for Clare posted a photo of the letter on Twitter confirming he had received one.

Irish Green party councillor, Oliver Moran also received a letter and tweeted his response. “Many thanks for including me in this action—and for the prudent warning that potency and content are unknown when drugs are purchased from an underground market.”

November 5 was declared  National Legalise Cannabis Day by Independent TD, Luke Ming Flanagan back in 2001. The letters campaign was created to mark the 20th anniversary of this.

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Ireland’s cannabis reform

The campaign comes amidst criticism that the Medical Cannabis Access Programme is still not functioning despite reassurances that Cannephil would be available from mid-October.

People before Profit TD for Dublin Mid-West, Gino Kenny raised the issue in the Dáil to Taoiseach, Michael Martin.

“Many families would have been very joyous during the summer when the medical cannabis access programme was to commence. But sadly, in a PQ response today, not one patient has been given access thus far. That is a huge disappointment to those families that this treatment could make life-changing benefits,” he said.

He added: “So what do you say to families that feel let down by the program and now they have to look at other treatments and probably getting no treatment at all?”

Michael Martin replied by saying that a lot of patients have been facilitated by the original ‘imported license’ but was unsure as to why patients had not availed of the MCAP. He promised to follow up with the Minister for Health which is currently Stephen Donnelly of Fianna Fáil.

Gino also announced changes to the Cannabis Regulation and Control bill that he is due to submit. It will now take place next year with a focus on production and consumption for personal use.

Image credit : Martin’sWorld

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