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"Too many" with haemophilia in Ireland have died

The Irish Haemophilia Society is looking for new therapies to be made available.

Image: Blood vial via Shutterstock

THE IRISH HAEMOPHILIA Society (IHS) says that too many of its members have died.

It now wants an “immediate positive decision” on an early access programme for seriously ill people with Hepatitis C to allow them to avail of potentially life-saving new therapies.

Interferon

Today, the IHS said that of the 12,365 patients in Ireland who need Hepatitis C treatment, 350 people have been identified by the specialist hepatologists to be in need of urgent treatment.

This group cannot medically tolerate the currently available Interferon based therapies due to severe liver damage which increases their risk of death if subjected to these treatments.

It said that these people require treatments that are not based on Interferon, and which involve a combination of two drugs.

  • 264 people with haemophilia were infected with Hepatitis C through blood or blood products.
  • Of these, 106 were also infected with HIV.
  • 113 people with haemophilia have died of HIV or Hepatitis C to date with 38 who dying solely of Hepatitis C.

The society’s chief executive, Brian O’Mahony, commented:

Too many of our members have died.

He said they want the Minister of Health and the HSE to agree to an early access programme to help save lives.

The IHS said that an early access programme for the new therapies, if begun immediately, “would save lives through prevention of decompensated liver disease, liver cancer or the requirement for liver transplants”.

It would directly save the government an estimated €10.5 million due to the availability free of charge of one of the new therapies prior to licencing in October.

An expert group, chaired by Dr Deirdre Mulholland of the Department of Health and Children, is currently looking at the new treatment options.

“If action is delayed, people will die and the subsequent human and financial cost will be even greater,” said O’Mahony.

Professor Suzanne Norris, Consultant Hepatologist at St James’s Hospital and Chair of the Irish Hepatitis C Outcomes Research Network, said that there is a “very narrow window of opportunity” for Government to avail of these cost savings and allow clinicians to treat those with advanced liver disease who are most at risk of liver failure.

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