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Dublin: 5 °C Friday 15 November, 2019
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Severe asthmatics face a 'lottery' for access to life-changing drugs

Consultant calling for fairer allocation of HSE budget to give medication to more patients.

ACCESS TO LIFE-CHANGING asthma medication is dependent on geography and luck, according to the Asthma Society of Ireland.

Sarah O’Connor, its chief executive officer, said access is “a lottery on a number of levels” as it depends on where you live and which consultant you have.

New biologic drugs for severe asthmatics are designed to target the immune system to better control symptoms. These are more expensive than traditional drugs and there are waiting lists for access to them around the country.

  • (Read more here on how you can support a major Noteworthy project delving into how access to healthcare in Ireland can vary depending on where you live.)

There are around 120 people on these drugs but there are easily 500 people who could be started on them tomorrow if the funds were available, according to Dr Des Murphy, consultant respiratory physician in Cork University Hospital. He added “there should be access to the drugs for more patients”.

Hospitals are assigned a specific number of people who they can prescribe the drug so people have to wait for a spot to open up to get access. To get on the list, there are strict criteria.

“These are people who are on long term maintenance steroids, have at least four asthma attacks and at least one hospitalisation in the past year”, according to Murphy. “Anyone on the waiting list is deserving of these drugs.”

Murphy feels that asthma services in Cork have always lagged behind Dublin hospitals as “the budgets allocated haven’t been fairly apportioned”. You could have 60 people waiting on these drugs, and you get access for five, he added.

Bottom of the List

Annemarie Kelly who attends Cork University Hospital has felt the impact of these budget restrictions first hand. She had to come off her biologic medication, Xolair, when she decided to have her second child, and was put to the bottom of the waiting list after the birth of her son Jack last year.

“My asthma was out of control during the pregnancy and was shockingly bad since I had him”, explained Kelly. “You’re sitting there wondering if they just want you to die.”

Kelly wasn’t able to walk a kilometer and was often so exhausted at weekends that she couldn’t get out of bed. Though she was on maternity leave, she needed a childminder to look after her daughter Molly, because of her ill health.

It took almost a year for her to get access to a different biologic drug. At that stage, she had dropped to one sixth of normal lung capacity and was admitted to hospital where she was treated with oxygen and antibiotics.

It’s like you’re suffocating. I was sitting there at night hoping I’d survive.

“The HSE have all the statistics about how many people die from asthma but what are they doing about it”, said Kelly. “I was very close to being one of those statistics.”

Since getting access to the drug in July, Kelly can now walk more than five kilometres, play football with her children and go on holidays. However, one major decision has been taken away from her. “I know I could never have another child as if I come off the drug, I go back to the bottom of this list.”

Increasing Deaths

There are many people impacted in a variety of ways due to these access issues, according to Sarah O’Connor from the Asthma Society. “It’s very hard when you hear about people having to retire because of their asthma and they can’t get access to this medication.”

She knows of someone who has spent 63 days in hospital but is still on the waiting list. “People are sitting there waiting for another patient to not respond [to the drug] or stop taking it.”

O’Connor is very concerned as the number of asthma-related deaths is increasing in Ireland against international downward trends. She added that currently there is one death every six days and lack of access to newer drugs may be contributing to this.

Postcode Lottery Investigation

Do you want to know if where you live in Ireland impacts your access to vital healthcare and how prevalent this problem is across the country?

Through Noteworthy, we want to do an in-depth investigation into why some areas are given access to medication and services but others are not.

We want to investigate who are the winners and losers of these postcode lotteries.

Here’s how to help support this proposal> 

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About the author:

Maria Delaney

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