Shercock parents hopeful for Orkambi progress

The parents of a Shercock Cystic Fibrosis sufferer are hoping that newly-published data on the drug Orkambi, which shows that it could will save the health system even more than was previously estimated, will be taken on board by the HSE, writes Thomas Lyons.

Ronan Whitmarsh, the father of a Shercock Cystic Fibrosis sufferer, Finn Whitmarsh, recently participated in one of the many candle light vigils at various points throughout the country to raise awareness of the battle his child goes through. Finn's mother, Linda, says that there has been movement on the issue: “There has been contact between the HSE and the drugs company, the negotiations about Orkambi are still underway. A price drop has occurred, the negotiators are still trying to get the best price for the drug.”

Linda says that the matter is going to a HSE leadership meeting for discussion. She said that the support of local authorities around the county has been very heartening. “A number of county councils around the country have passed motions calling on Simon Harris to approve this drug under the long term illness scheme.”

Cavan County Council were the first ones to propose it at the statutory monthly meeting in December. “They started the ball rolling. Cllr Shane Reilly called on the chamber to support the motion and it received unanimous support. Since then, 11 councils around the country have also passed the motion,” Linda said.

On Friday, February 17, the Cystic Fibrosis community took to the streets of Ireland, not in protest, but to join the country together in candlelight vigils for hope. Ronan said: “Ireland has the highest incidence of CF in the world but, despite this, the CF community have become the forgotten Irish. We have endured decades of this in the past with poor services, assistance and no recognition from previous governments.”

The Whitmarshes are hoping that the HSE's decision on the issue will be made soon.