Michael Collins (Cork South West, Independent) | Oireachtas source

This is a very important Bill. The amendment to the Health (Pricing and Supply of Medical Goods) Act 2013 will establish specific grounds with regard to getting some orphan products assigned to the reimbursements list. Unfortunately, we are seeing more and more rare conditions in Ireland and it is vital those receiving medication for rare conditions are entitled to get it reimbursed through the State. Some of these medications are extremely expensive and most people would not be able to afford these life-changing medicines.

At present, the HSE does not differentiate orphan medicinal products from other medicines in assessing their cost effectiveness when making a decision in respect of whether a medicine should be reimbursed. The problem with this is the HSE is looking at medicines that affect the highest number of the population and taking this into consideration when deciding whether a medicine will be reimbursed. Orphan medicinal products are for a minority of people. If this is the HSE's method of deciding then people with a serious condition who are in the minority have no chance of getting reimbursed even though their conditions are so serious and the orphan medicine can be life-saving for them. The HSE still bases its decisions on the percentage of the population affected and does not take into account how life saving a particular medicine could be to a person. The HSE's method of making decisions on reimbursement needs to be addressed as a matter of urgency.

I cannot stand up here tonight when we are speaking about rare conditions and not mention the hardship Vera Twomey and other families in Ireland have had to endure. Deputy Gino Kenny has been a champion for these causes down through the years. It is a disgrace these families have had to go to the lengths they did to get medicinal cannabis for their children. Earlier this month, a Cork based mother travelled to Barcelona to access medicinal cannabis for her son, Michael, who was born with a rare disease that causes him to suffer seizures. This lady was stopped at the airport on the way home and the medicinal cannabis was confiscated from her. I have pleaded that medicinal cannabis should be made available in Ireland for cases such as that of Vera Twomey's daughter, Ava. We could introduce medicinal cannabis safely into our country, whereby it would be available only through our pharmacies and under strict regulations. Medicinal cannabis has been legalised in more than ten European countries, Canada, Australia and 30 US states. We need to step up to the plate and stop innocent children who have rare conditions from suffering any more than they already do.

Another massive letdown is the increase in the VAT rate to 23% on food supplements, vitamins and minerals. A total of 80% of people use health food supplements, including vitamins, minerals, omega 3, probiotics and super foods. The Government will increase the VAT rate on these products from 1 January. A total of 84% of the population disagrees with this increase. When will the Minister for Health listen to the people who elected him? I ask him to reverse the VAT increase. It is his duty as Minister for Health to do all he can to encourage the people of Ireland to live as healthily as they can but instead he is putting financial obstacles in the way of the people when it comes to their health.

Another example of this is the FreeStyle Libre device for people with diabetes to replace the current method by which diabetics check their blood levels. The device has a small sensor that automatically measures and continuously stores glucose readings day and night. The device is particularly useful for children and the elderly and can be used while the person sleeps. The device costs €120 to buy and an additional €120 a month for 16 patches. Since 3 April, the FreeStyle Libre system has been reimbursed for some patients between the ages of four and 21. I very much welcome this decision but many of our elderly diabetic patients struggle with the cumbersome old method of using lancets to draw blood. As a diabetic I fully understand the constraints this chronic condition places on a person's life. The risk of diabetes increases with age and it is estimated that 15,600 people over the age of 80 suffer from diabetes.

See this speech in context