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The Battle for Orkambi

A few weeks ago we told everyone the great news that the drugs Orkambi and Symkevi would be licensed in England, following on from the same news from Scotland a few weeks previously. In that feature we hoped that similar action would then cover the remaining areas of the UK. Liam McHugh, who we have featured so many times has been instrumental in this battle particularly in his home country of Northern Ireland. We are so pleased to say that at the end of October Liam’s hard work did pay off and Northern Ireland quickly followed by Wales was added to the list already containing Scotland and England.

For many this battle has taken years and years of hard work, dedication and determination. Many of the CF patients have received their new medications and we sincerely hope that this drug gives the quality of life to so many that otherwise would have struggled. We learnt about this battle, originally through Liam McHugh who ran a feature with us about Orkambi. Since then we have followed with keen interest and hope that with our involvement with Banana Crumble features and our work with the CF Trust that maybe we have helped spread some awareness.

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The news that everyone has been waiting for….

Thursday was a huge day for all of those with Cystic Fibrosis and will go down in history as a day to remember.

For many years people with CF have been fighting for access to the drugs Orkambi and Symkevi. Six weeks ago Scotland announced a deal to license the drugs but nothing came from NHS England until this week. Wales and Northern Ireland are still waiting but surely with the precedent that has been set by Scotland and England it is just a matter of time.

The Cystic Fibrosis Trust made their announcement on Thursday 24th October and thanked the CF Community for all their support and campaigning. To read the whole press release click here.   Over the years that Banana Crumble have been in existence we have featured several pieces from people asking for this so it is really good to know that when so much around us at the moment seems to be doom and gloom that there really is some good news about.

Sign up today for your regular dose of good news. Sign up takes 2 minutes.  By signing up, reading, sharing and liking our articles, you are helping us raise money for the Cystic Fibrosis Trust! Thank you!  

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The only way I can describe the heat was like running for three and a half hours in a sauna..

Hi Banana Crumble!

Well what can I say. The London Marathon this year has been quite an experience.  From reaching a personal milestone of raising £200,000.00 for Cystic Fibrosis the night before the event, to participating in the hottest London Marathon in history. The only way I can describe the heat was like running for three and a half hours in a sauna. I was playing mind games with myself the whole way through, one minute I was going to walk or quit, to I’ll run until the next water station and then stop. Then my head told me that look at people fighting a battle every single day living with Cystic Fibrosis. They’re battle is continuous and that mine is only temporary. That’s what kept me going right to the finish without stopping. My toughest marathon ever.

The fight in the UK continues to try and get the drug Orkambi and the exciting pipeline deal of drugs that are coming along approved on the NHS for CF patients. We are blessed because our 26 year old daughter Rachel is on Orkambi due to clinical trials for nearly five years. It has totally transformed her life. Rachel has a Degree, Masters and later this year will become Dr. Rachel McHugh in Psychology. We are so very proud of her. We have to keep pushing at our government, NHS and Vertex the pharmaceutical company all the way to get a deal struck because people are dying as we speak who cannot get access to Orkambi. The drug is sitting on the shelf available but it’s deemed effective but too expensive. What price do you put on someone’s life ?

On Friday 22nd June we are holding protests in N.Ireland, England, Scotland and Wales to let our voices be heard that we wont stop until a deal is done. It’s also CF week and the 22nd June is also wear yellow day for CF so we are hoping to have a sea of yellow all over the four nations on that day with as much media attention as possible to highlight our very important goal. Let’s hope we can get a massive turnout on the day to show that the whole of the UK are behind us. We won’t stop until we get Orkambi approved and let’s hope it’s sooner rather than later before more lives are lost.

This photo is  me just after finishing and then meeting my wife Eleanor a few minutes later. Thanks again Banana Crumble for your tremendous support especially raising over £2000.00 for CF. We  are all so grateful.

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Good News Orkambi is a drug that can really help Cystic Fibrosis Sufferers – please help …

My name is Liam Mc Hugh,

I am 56 years young and live in Co. Tyrone, N. Ireland. I have been married to Eleanor for almost 31 years and we have an only child Rachel aged 26 who was born with Cystic Fibrosis. It’s not been easy adapting to the lifestyle of daily medication, physio, hospital appointments etc but has become a way of life. I have dedicated my life to fundraising for CF mainly by running marathons along with other various types of fundraising. My marathons include New York, a few Belfast’s, Dublin’s, Newry and quite a few London Marathons. Last years London Marathon was my proudest achievement yet raising a grand total of almost £38,000.00. I’ve already started my fundraisng for this years London Marathon and have reached £7,000.00 at present which brings my total altogether up to £190,000.00 since Rachel was born. I hope to pass the magical £200k mark by the end of this years London Marathon. In 2015 I was awarded the British Empire Medal in the Queens New Years Honours list for my services to Cystic Fibrosis. In October 2017 I was made an Ambassador for the Cystic Fibrosis Trust. I am very proud of both, helping to raise awareness.

Rachel has been on a drug called Orkambi made by a Boston based pharmaceutical company called Vertex for the last four and a half years due to taking part in clinical trials. It has been quite a transformation. We are so lucky to have been given this chance. Rachel doesn’t sit back and gets on with life as best she can. She has a Degree, Masters and is in her final year of doing a PhD all in Psychology. It will be the proudest day of our lives when she will graduate as Dr. Rachel Mc Hugh at the end of this year. To say we are proud is an understatement.

Orkambi is proven to slow the decline in lung function by 42% and to reduce hospitalizations by 61%. The drug is deemed by NICE, an independent public body, as being not cost effective. This drug can save lives and extend lives. What price do you put on a life. We as a CF community have recently began a UK wide petition to make Orkambi available on the NHS. This petition went through the roof and gained 100,000 signatures in only eleven days. This has enabled us to have a debate in Parliament to discuss Orkambi being approved in the UK which will take place on the 19th March 2018. People Power has spoken. We need discussions to take place between all parties ie: Vertex to lower their price, NHS, the Government and the CF Trust to make this happen plus of course the public CF community. We wont stop until we gain access to this drug plus other exciting new drugs that are in the pipeline for all with Cystic Fibrosis.

If anyone would like to help me in my goal to beat CF you can sponsor me by clicking on the link below. Any donations large or small would be greatly appreciated. I won’t stop until the job is done, that is beating Cystic Fibrosis for good.

Help Liam make a difference

Message from Banana Crumble – We have spoken to many people since our launch in September and have met some truly inspirational people. Having had conversations with Liam and hearing about what he has achieved is absolutely remarkable. We think Liam is a true legend and hope that we can help him reach his target. We have been humbled by his real story and hope that all our members agree. We will continue to tell Liam’s story and keep you updated with his progress.