Remarks by Fianna Fáil Leader, Micheál Martin TD on the need for Orkambi to be provided to Cystic Fibrosis patients

On 19 October last, I raised the need to give access to the Orkambi drug to cystic fibrosis, CF, patients.  I pointed out that we have the highest number of people per head of population with cystic fibrosis.  We should be in the vanguard in terms of research and new drug technologies.  Since I last raised this matter, I met Jillian McNulty who has CF and who has been on Orkambi for three years and three months.

It is worthwhile to meet her and hear first-hand of the dramatic and transformative impact Orkambi has had on her life.  One can look at all the statistics and so forth, but one should also meet a person concerned.  There is one stunning statistic.  In the past two and a half years, Jillian has been in hospital for only ten weeks and that was due to the swine influenza.  Before she went on Orkambi, she was in hospital for eight to nine months every year.  That is her testimony to me.  She has met one of the lead researchers in Washington.  This drug has been 20 years in the pipeline and billions have been spent on bringing it to fruition.

There has been an attempt in recent times to talk down the effectiveness of the drug.  That is wrong.  The leak last week to The Sunday Business Post has been described by Cystic Fibrosis Ireland as a heartless and disgraceful form of communication by the Health Service Executive, HSE, to people with CF.  It was disgraceful and heartless but it is also part of an agenda that appears to be about talking down the effectiveness of the drug.  If it was so ineffective, why would the HSE spend 25 to 26 weeks negotiating with the company?

I do not deny that there are issues with the cost.  However, let us accept that this drug has an impact and is effective in terms of lung function, weight gain, quality of life and independence.  Jillian McNulty said that to me but there is no need to take my word or her word on the matter.  Cystic Fibrosis Ireland, in its open letter to the Minister, makes that point and it is very disappointed by the degree to which the acknowledged international research is in many ways being dismissed by the HSE and others.  It also references Professor Stuart Elborn of Royal Brompton Hospital, a leading facility for the treatment of CF, in this regard.  The research to which I refer points to the extraordinary impact the drug is having and how exciting it is, not just in the short term but also for its long-term impact on the condition.

Will the Government intervene to ensure that this drug is made available?  Will it also ensure that there will be no more talking down the effectiveness of the drug for people with CF?

I do not accept the Minister’s response in its entirety.  Up to very recently the Department of Public Expenditure and Reform demanded the right to sanction any new drugs and the Minister for Health had to go before the Cabinet.  That was the position.  I know that to be the case up to very recently, even up to the time the new cancer drug pembro came along.  Professor Stuart Elborn has said:

Long-term follow-up data has indicated that this treatment can prevent disease progression.
Initially, we were able to show that you can make people a bit better.
Now we’re seeing exciting and reassuring long-term improvement.
We hope it will lead to a further rethink about the long-term benefits

I am really excited the therapy and also the pipeline of other powerful drugs that could get us closer to a cure.

We have the highest number of cystic fibrosis patients per capita in the world.  We should be leading this in terms of new technologies and clinical trials and engaging with the industry, not in a reactive mode.  Jillian McNulty has said to me that she is convinced that she would not be here without this drug.  That is her assessment of the situation.  I take that seriously.

There is a lot of medical evidence that has not come to the fore and there has been an attempt to talk it down.  I believe the context of the discussions would change if there was an acceptance that this drug was effective and was an impactful therapy for people with cystic fibrosis.  I am glad the Minister has at least confirmed that much today.