James Reilly (Fine Gael) | Oireachtas source

I welcome the Minister to the House. I have no wish to be distracted from what we are discussing, but I listened to the last speaker discussing transplants. As the Minister of the day at the time I know of the extra money and the transplant office put in place. I know of all the additional transplants that have taken place since then and, therefore, I would find it difficult not to respond. Notwithstanding that, there is a great deal more work to be done. That is part of what we are about today. All these things have a cost and when budgets are tight – they are better now than they were some years ago – these things become serious issues.

I am delighted we are having the debate but I am saddened that it is necessary. Science has a long and proud tradition in this country and across the globe of bringing new developments to improve the lives of people. Many scientists are seen as heroes, and rightly so. While I do not expect us to go back to the days of Faraday and all the discoveries he made and which he shared freely with the world, I believe we have gone to the other extreme with Orkambi and this company, Vertex. This is a political forum and I intend to take advantage of it to speak my mind. This company seems to be very much focused on extracting a price that it believes the market will bear, one that does not relate in any way to the patients for whom it is intended. The company was given considerable sums of money by charitable organisations throughout the globe and, I have no doubt, received much by way of grants and tax incentives, just as we do in this country. Ultimately, we have all invested heavily in this.

The goodwill and celebration we should be having today with regard to our citizens who suffer with cystic fibrosis and who could benefit from this drug is sadly soured by this situation. I am very much of the view that we have passed the tipping point and that the Minister now, rightly, should engage with our EU counterparts. When I was Minister for Health, an EU directive was passed at the EU Council that would allow EU member states to come together to purchase vaccinations. The move allowed smaller countries gain from the buying power of bigger countries. I believe that will have to be activated in respect of these orphan drugs. I know this is something many will resist and there are many vested interests against the idea.

I am not remotely against the pharmaceutical industry. I think we have a great industry in this country and those involved have been responsible. They drive a hard bargain and that is right, but it is important to point out that the organisation representing those companies, the Irish Pharmaceutical Healthcare Association, does not represent Vertex. Vertex is not a member of that group.

I think we have crossed the Rubicon. I wish to make it clear that I know the Minister wants our patients with cystic fibrosis to have this drug, as does the Government. As a doctor, I want my patients with cystic fibrosis to be able to avail of this drug. I would call the bluff of Vertex and call on the company to let us have an immediate response on whether the company will be prepared to risk-share. We know that this drug can improve quality of life for one in four of those who have the genotype. It can work for them. If the company agreed to that, it would represent significant progress and a start.

It is important for everyone to acknowledge that the HSE is acting on behalf of the Government which is, in turn, acting on behalf of the people to get value for money and to make this drug available for patients. The HSE needs our support. I see people trying to separate Professor Michael Barry from the HSE. He works for the HSE. He is the face of the HSE in that room doing his damned best on our behalf and on behalf of our patients to secure these live-saving drugs. If we pay out these exorbitant sums here, then whose home help services are we going to cut over there? What wards will we not build over there? What vaccinations will we not make available elsewhere? Opportunity cost is a factor here.

I wish to reassure those who suffer with cystic fibrosis and their families that I know the Government, and the Minister for Health in particular, are very much on their side and battling for them to get this drug to improve their lives.I ask that we all get behind the HSE on this, that we are not diverted and that we get a deal so this drug can be made available to the citizens of our country who could benefit from it.

We will not stop here because next week there will be another drug and next year there will be five more. The current approach by certain pharmaceutical companies of seeing what the market will bear and demanding it because they feel they are in a position of monopoly cannot be allowed to pertain. Cognisance must be taken of the fact that many charitable organisations, patient advocates and governments in their own way put a lot of funding through companies to help them research these products.