Please Put Lives Before Cost — Overturn the Skyclarys Decision

 

To Taoiseach Micheál Martin, Tánaiste Simon Harris, the Minister for Health, all TDs and Senators, the leadership of the HSE and President Catherine Connolly:

 

We urgently appeal to you to overturn the recommendation not to reimburse Skyclarys for people living with Friedreich’s ataxia.

 

Behind every decision about funding is a real person and a real family.

 

Families living with Friedreich’s ataxia already endure the heartbreak of watching someone they love face a progressive and devastating illness. Parents watch their children lose abilities and independence. Husbands, wives, brothers, sisters and children live with the fear of what tomorrow may bring.

 

Imagine knowing that a treatment exists that could offer hope of slowing the progression of this cruel disease, only to be told that its cost stands in the way.

 

The anguish of that is impossible to put into euros and cents.

 

We understand that the HSE has a responsibility to manage public money carefully. But patients with rare diseases should not be denied hope simply because their treatment is more expensive. The Government, HSE and pharmaceutical company must work together to negotiate a fair price and find a solution.

 

Please meet these patients and their families. Look them in the eye, listen to their stories and understand what this decision means in their everyday lives.

 

They are not numbers on a balance sheet. They are our children, parents, partners, siblings, friends and neighbours.

 

We appeal to everyone with the power to influence this decision: please reconsider it and fight for a pathway to provide Skyclarys to eligible patients in Ireland.

 

You can negotiate the price of a medicine. You cannot put a price on a human life.

 

Give these families hope instead of heartbreak.

 

Please put people before price and overturn this recommendation