‘We deserve the same chance as others:' Derry teen with Friedreich’s ataxia speaks out on lack of access to vital medication
A 17-year-old Derry girl, who was diagnosed with Friedreich’s ataxia at age seven, has outlined how a medication that can slow the progression of the condition is not funded in Northern Ireland or the Republic of Ireland.
Student Kenzie McDonagh has penned her own article for the Journal, speaking out about the lack of access to the medication Skyclarys (omaveloxolone) and share her personal experience of living with Friedreich’s ataxia.
The following is McKenzie’s article.
“I was born with Friedreich’s ataxia, although it took years before doctors understood what was happening to me. I was diagnosed at just seven years old. Now, at 17, I am living with a rare and progressive condition that affects my daily life in ways many people cannot imagine. This is not just my story — it is the story of many people who are fighting for access to treatment that could slow the progression of this disease. “Friedreich’s ataxia is a rare genetic condition that affects the nervous system and muscles. It causes problems with balance, coordination, speech, and movement. Over time, walking becomes more difficult, and many people eventually need a wheelchair. Simple things like climbing stairs, carrying school bags, or even writing can become a challenge. Fatigue, muscle weakness, and heart complications are also common, making everyday life harder than it should be for a teenager. “Living with Friedreich’s ataxia means constantly adapting. School, friendships, and social life all require extra effort and planning. While other teenagers are thinking about their future careers or sports, I am often thinking about hospital appointments, mobility, and how my condition might progress. It can be frustrating, scary, and isolating at times, but I try to stay positive and focus on what I can still do. “What makes this situation even harder is knowing that there is a tablet available that can slow the progression of Friedreich’s ataxia. This treatment offers hope — hope for more independence, more mobility, and more time to live a normal life. However, the Irish and Northern Ireland governments currently will not fund or provide access to this medication. Knowing that a treatment exists but is out of reach is incredibly painful. It makes me feel angry, sad, and forgotten. “Young people like me should not have to fight for access to treatment that could change our lives. We deserve the same chance as others to protect our health and our future. Governments should listen to patients, families, and medical professionals and take action to make this treatment available. “I am 17 years old, and I want the opportunity to live my life with hope, dignity, and support. Access to this medication would not cure Friedreich’s ataxia, but it would give me and others like me a better chance at living fuller, longer, and more independent lives. That is all we are asking for — a fair chance.”
In January, following a parliamentary question by TD Pádraig Rice, the HSE said the application pricing and reimbursement of
omaveloxolone remains ‘under consideration’.
Skyclarys (omaveloxolone) has been approved by the Medicines and Healthcare products Regulatory Agency (MHRA) for use in the UK. However, Ataxia UK said the Department of Health and Social Care (DHSC) stated the NHS would not fund interim access to Omav ‘since the manufacturer withdrew from the NICE approval process.’