Sir, – Dominic Coyle's recent article ("Shouting the loudest often proves the catalyst in a broken drug-approvals process", Business, March 1st) on the "broken drugs approval process" in Ireland is excellent, primarily because he analyses the challenging issue of access to new and innovative medications from a number of perspectives and does not focus solely on cost.
There is no doubt that many of these new medications are eye-wateringly expensive, a fact that Cystic Fibrosis Ireland (CFI) was very conscious of when we advocated for the Orkambi drug. However, CFI also sought to be responsible in our advocacy by not exaggerating the benefits of any drug and only advocating when we were convinced about the proven efficacy of Orkambi from clinical trials, including in Ireland. Our public campaigning only began when it became clear that negotiations on price had completely stalled. To be fair to the HSE, the drugs portfolio deal for Orkambi that was eventually reached after negotiations recommenced with some prompting on our part was innovative and has now been adopted by other countries such as the Netherlands and Sweden, so good deals on new drugs can be achieved with the necessary will and imagination.
In the experience of CFI, most patient groups in Ireland are very reluctant to publicly advocate for a drug and only do so as a last resort. We are not and will never be cheerleaders for big pharma. We put on our Ireland jerseys too when it comes to broader health costs and we would much rather not be outside Leinster House protesting with ill patients, but to have a drug reimbursement system that is fully fair, rapid and transparent. However, recent judgements aside, the suspicions of patient groups are inevitably aroused when drugs are widely available in other parts of Europe but not in Ireland or when drugs are significantly delayed, thus delaying care to very ill patients. Others concerns are raised when we are told that the drugs budget for 2019 is now almost exhausted but with little information provided to support such an assertion and with no information on savings from the existing drugs budget other than to assure us that every effort is being made.
Of further concern is the simplistic and often unchallenged public commentary along the lines of “we are being ripped off by rapacious pharmaceutical companies for rubbish drugs supported by naive or over-effective patient groups and we have weak Government Ministers who give in too readily to public opinion”.
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This can play well to the public gallery, especially in the context of recent health overspends. However, the reality from a patient group perspective is very different. We see from trials the actual impact of these new and often ground-breaking drugs on our patients. Sometimes they are the first-ever drug for a life-threatening condition. As patient groups we are not dupes in the process. We are always alert to and reject “price gouging” by industry but on the other hand we also note there is also little acknowledgement in the some commentary of the huge cost of bringing a new medication from test-tube to tablet and the risks involved, especially for new and innovative drugs for rare diseases, including rare cancers.
In respect of the role of politicians, we say thank God for the humanity of Simon Harris and Finian McGrath and the opposition health spokespeople who have supported the efforts by many patient groups for access to new and innovative medicines in Ireland and who are then criticised, including by their own former civil servants. We don’t know where we would be without their interventions in recent months.
Ultimately however we know and agree this is not the way forward. We need a new and comprehensive drug reimbursement strategy in Ireland that involves all key stakeholders including patients and patient groups and which is not just a huddle in a darkened room between representatives from the pharma industry and the HSE. We make no apology for standing up for the rights of our patients through public advocacy. We are only “shouting” because we are not being heard. – Yours, etc,
PHILIP WATT,
Chief Executive,
Cystic Fibrosis Ireland,
Dublin 6.