Sick teenager refused treatment due to his postcode
A seriously ill Northern Ireland teenager has been told he is not eligible for a potentially life-saving drug due to his postcode. 13 year old Curtis Croskery from Killyleagh, County Down needs a specialist drug called polyglobin. While this has been approved for other patients in England, Curtis’s distraught mum, Lorraine Croskery, says that the Belfast Trust in NI are refusing to pay for it as they say it is unlicenced.
Curtis was born with a rare genetic condition – agammaglobulinemia – which means he has a severely compromised immune system, and his body is unable to fight infection, leading to serious and even fatal consequences.
This primary immune deficiency (PID) can often be managed through specialist medications and immunoglobulin transfusions (a type of blood transfusion, of which polyglobin is one). However, Curtis was under-prescribed immunoglobulin and at the age of 5 contracted norovirus.
In people with normal immune systems, this vomiting bug usually goes away within a week or so. However, without a fully functioning immune system, it can be devastating.
Lorraine says: “Curtis is now seriously ill and has been told by his specialist at the Royal Victoria Hospital that he needs specialist treatment with the drug for a year, but the Belfast Trust have refused this.
“They said they would not fund this drug because it was not licenced - but as it is used in mainland Britain, I don't know what the problem is”.
Curtis’s plight has been brought to the attention of Liz Maccartney, Trustee of UK PIPs (a national organisation dedicated to people with primary immune or antibody deficiencies and their carers), who says: “Without the polyglobin Curtis will not grow or develop properly as he is unable to retain adequate nutrition due to constant sickness and diarrhoea. His physical and mental development will be permanently stunted and he may die if this disease is not stopped.
“We appreciate that the treatment needs to be administered directly to his stomach by naso gastric tube and is slightly experimental. However, it has been approved and given in this form in similar circumstances in England.
“If Curtis lived in England, he would have full access to this treatment. But by the very virtue of where he lives, he faces an uncertain future. It is a disgrace and we are asking that the N.I. Minister of Health at Stormont get involved to ensure Curtis gets the treatment he so desperately needs.”
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Liz Maccartney, UKPIPS Co-ordinator & Trustee, UKPIPS telephone: 07531 076409, Email: ukpips3@gmail.com
About UK PIPs
UK PIPs has been set up to provide information, advice and support to people living with a Primary Antibody Deficiency (PAD) or any other Primary Immune Deficiency (PID).
It has the following key objectives:
To provide information, advice and support
To promote early diagnosis. Currently, this can be at least five years – and often more.
To promote social welfare
To offer advocacy
To increase awareness of these conditions
To promote the provision of appropriate medical treatment.
To encourage research into psychological, emotional and practical needs
To support the rights of people living with a PAD or PID so they may participate fully in employment, education and decisions about their medical treatment
To ease the social isolation of people living with these conditions – and those who care for them.
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