Lisa Chambers (Mayo, Fianna Fail) | Oireachtas source

I welcome the opportunity to contribute to this debate. I commend my colleague, Deputy Brassil, who has done considerable work on the basis of professional experience and qualification in this area. He has sought to find an alternative solution to the situation in which we find ourselves.

We know the current system is not working. In recent years, drug after drug has been debated at length in the House. We have had Orkambi and Respreeza and now we have Spinraza. More and more orphan drugs for rare diseases will continue to surface. Every month and every year they will come down the tracks. We need to find a better way of dealing with these drugs when they come online. We need to find a better way of assessing these drugs in a fair and transparent manner, one that at least gives some opportunity for drugs that work to make it through the system.

As it stands, the process will never allow a drug such as Spinraza to get through. Spinraza will never meet the cost ratio analysis because it is quite expensive and a very small number of children and adults are affected by the disease that it seeks to treat. That should not preclude a drug that we know to work and that save lives. It considerably increases the quality of life for children in this country. We should give such drugs a fair chance of being approved for funding for those families and children who need it.

In the context of the Bill, we are not suggesting that every drug for rare diseases will make it through. That is not sustainable or affordable. Of course we have a finite budget in the health service. We need to balance the budget and try to afford all of these things. As matters stands, these drugs will never get through. What we are saying is that some drugs should have at least some chance of making it through the system, especially in circumstances where we know they work to save lives and improve the lives of children and adults.

I am keen to focus on Spinraza because I have been working on this issue in recent months. Parents and children are forced to go through a terrible journey. Parents have contacted local Deputies throughout the country. We have organised a march outside Leinster House. There have been several questions posed to the Minister, the Taoiseach and the Tánaiste in the Chamber. There have been parliamentary questions. The list is endless. These are the avenues taken by parents who are desperate to get these drugs for their children. No family should be placed in this type of situation whereby the only avenue open to them is intense lobbying to create intense political pressure to try to get a decision that is politically made because approval does not work inside the system. We know this and we do not want to subject families and children in future to march outside the gates of Leinster House.

We heard from a young girl, Grace, who is not even ten years old. She presented to an audience of adults in the audiovisual room. She told us why she needs this drug to live. We should not have that situation. There needs to be a fair process whereby these drugs are properly assessed. If the system is set up so that these drugs automatically fail, then it is not fair.

The Bill would go some way towards redressing the balance. It would at least give a chance to drugs that we know to be efficient and work. Families and children are openly saying that all they want is a chance. If a given drug does not work for them, then they do not expect the State to pay for it in the long term. However, they want the opportunity to get a drug that could make a major difference to their lives in terms of surviving and living longer. In such instances, I hope to see Government and Opposition support for this Bill.

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