Prolonging The Agony

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Luke Ming Flanagan (left) and Gino Kenny flank Vera Twomey at Dublin Airport in April, 2017 after Vera obtained medicinal cannabis for her daughter Ava in Barcelona, Spain.

Luke ‘Ming Flanagan MEP writes:

Vera Twomey has fought a well documented battle to gain access to a life changing cannabinoid based medicine for her daughter Ava Barry.

She now faces another battle in order for her daughter to continue using this same medicine.

The reason. The HSE are refusing to fund it under the Long Term illness Scheme.

Not because of medical reasons but purely for bureaucratic reasons.

Furthermore the HSE are now trying to force Ava Barry’s family to use another product sourced in the Czech Republic which does not have the support of either of the two consultants working with the child.

Worse still is the fact that the family would not get the equivalent medical support in the Czech Republic that they are currently receiving in The Hague.

The HSE are telling us that ‘Market Authorisation’ is the reason for this issue now arising. They say that due to this they cannot fund the medicine under the Long Term Illness scheme.

However it is clear to anyone that if the state wished to fund the medicine under another mechanism then they could. We are talking about €1600 per month. A drop in the ocean of HSE funds.

Vera Twomey and her family have climbed a mountain in order to get access to a medicine which has improved their daughters life above and beyond all expectations.

Having climbed this mountain it would be farcical and potentially tragic if all this progress was halted because a government bean counter couldn’t work out how to get few extra beans out of the jar.

Luke ‘Ming Flanagan MEP

Previously: Vera Twomey on Broadsheet

 

 

12 thoughts on “Prolonging The Agony

  1. realPolithicks

    When you read something like this it’s hard not to conclude that the people who run the HSE are a bunch of a$$holes.

    1. GiggidyGoo

      Harris has been involved in this since he became Health Minister. Yet, as usual under FG people have to fight and fight.

      1. realPolithicks

        I don’t disagree, but the HSE seems to make these kind of heartless decisions on a regular basis. It suggests that there is a culture of nastiness in that organization which ought to be looked in to.

  2. scottser

    this isn’t a health issue, rather it should be landed squarely at the door of the minister for justice who has the authority to grant a licence to this patient’s consultant.

    S.I. 173/2017

    6. A person so authorised by a licence granted by the Minister under section 14 of the Principal Act (and for the time being in force) may, under and in accordance with the terms of the licence and in compliance with any conditions attached thereto—

    (a) produce, supply, offer to supply, import, export or have in his or her possession any controlled drug to which the licence relates, or

    (b) cultivate opium poppy or Cannabis, or any plant of the genus Erythroxylon as may be specified in the licence.

    1. ReproBertie

      If the HSE are going to fund it then Simon Harris needs to make sure his department are making the necessary changes to the Long Term Illness Scheme lists. That’s not something the minister for Justice can do.

      1. scottser

        ‘Process of reviewing and assessing the dossier to support a medicinal product in view of its marketing (also called licensing, registration, approval, etc.), finalized by granting of a document also called marketing authorization (MA) (equivalent: product license).’

        it reads to me like a regulatory problem that the HSE don’t want to deal with. if the MOJ grant an import licence then the consultant can import from wherever he/she wants and the HSE can then argue it should be placed on the LTIS list.

    1. david

      As usual someone profits in someone’s problem
      I wonder how many dope smokers would spend that much
      It would have a whole street high as kites

      1. scottser

        Medicinal cannabis oil prescribed for a diagnosable condition is obviously not the some as recreational use.

  3. Mary Jane

    One suspect it’s all about corruption. So the question remains, who are the crowd in the Czech Republic? And what is their connection to the HSE?

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