Cystic Fibrosis Fundraisers

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Posted by Lorraine Barnes on June 17, 2016 at 3:35 AM

Today NICE (National Institute for Health and Care Excellence) rejected the use of ORKAMBI in England for Cystic Fibrosis patients with the common F508dl mutation - the mutation which both my sons have.

This announcement does not come as a surprise to me, my family, or the Cystic Fibrosis Community as a whole - it would have been more of a surprise had they passed it for use!!  Everything comes down to MONEY - COST EFFECTIVENESS.  It's sad to think that the chance of helping to prolong my sons lives comes down to MONEY!! 

This morning I read a quote in the Daily Mirror from Prof Carole Longson, director of the NICE Centre for Health Technology Evaluation saying the cost was “too high” to represent “good value for money”.   Well I'd like NICE to add up the cost of the following medication, equipment, treatments, NHS Staff wages/time management which typically represents what it takes to keep my sons alive - one already has a rapidly declining lung function at just 13 years of age - currently averaging 49 - 51%.

Medication & Equipment for 2 boys with Cystic Fibrosis:

Nebulised PROMIXIN twice a day, indefinitely

Nebulised DNASE (Pulmozyme) twice a day, indefinitely

Oral Antibiotics - Azithromycin - 3 times a week

Vitamins:  Vitamin E, Vitamin AD, Vitamin K - every day

Reflux Medication:  Omeprazole/Lansaprasole - every day

Creon 25000 - average of 50 - 60 tablets a day for 2 boys

Levimir Insulin - 8 Units every day

Peptomen Junior Overnight Feed - 1000 ml - every night

Steroid Nasal Spray

Scandishakes - 2 each every day

Inhalers:  Ventolin / Seritide

Insulin Pen

iNeb's x 2

Bloods Monitor

Needles for Insulin Pen

Physio Equipment:  Acapella x 2 - PEP Device x 2

Spacers for Inhalers

Back up Nebuliser for Hypertonic Saline when needed

Hypertonic Saline

Overnight Feed Pump

Overnight Feed Stands

Giving Set's for Overnight Feed pump and double Connectors

IV Antibiotics / Hospital Admissions / Hospital Appointments

IV Antibiotics for 13 year old son every 2/3 months for 2/3 weeks every time

Home Delivery Service for IV Infusers and Ancilleries needed:  Needles, Syringes, Alcohol Wipes, Sharps Bin, Saline, Heploc

IV Antibiotics for 21 year old son as an when needed - averaging twice a year at moment

Hospital Admissions when unwell for IV Antibiotics/treatments

Hospital Appointments:

Diabetes Clinic every 3 months

CF Clinic appointments every 6 weeks - Port Flushes

Operations:  Portacath Operations, Broncoscopies, Endoscopies, Gastrostomy

Dieticians Appointments

Hearing Test

Diabetes Eye Screening

Gastroentrologist Appointments

Annual Reviews

All of the above just an EXAMPLE of the treatment/medication needed to keep a child with Cystic Fibrosis well - and all of that STILL doesn't stop the decline - no matter how hard you try.  Infections still happen, they can still catch a cold which can attack the lungs, the sticky mucus still causes damage - long term irriversible damage - the no going back and mending it type of damage.

I have 2 packed medication cupboards full of tablets/scandishakes/syringes/saline/sterile water/hypertonic saline/spare Mic-Key Buttons, Feed lines, thermometer, SAT's monitor, daily medication and a loft packed with Overnight Feed Boxes/giving sets/double connectors.

ONE TABLET could make all the difference to the lives of children like mine - taking away the fear of a slow drawn out painful death - a loss of lung function over time. The need then for TRANSPLANT - another extremely HIGH COST to the NHS.

The cost to the NHS ALREADY is immeasurable - someone SERIOUSLY needs to sit down and add up the cost of all of the above - I can promise it will come to more than £100,000!!!  If ORKAMBI can help reduce infection/stabalise the lung function, it would mean less of a burden on the NHS - less need for ORAL ANTIBIOTICS - LESS IV ANTIBIOTICS - LESS WORRY for families like mine.

How can someone who knows absolutely NOTHING about Cystic Fibrosis, or what it entails, how it affects families like mine, lives of people living with Cystic Fibrosis, make decisions based purely on the COST of a Drug?!  I've seen great examples of how it's already improved lives of people who before couldn't walk far without getting out of breath, who had countless numbers of Hospital admissions.  I want that for my sons. 

I challenge someone from NICE to experience a typical DAY, WEEK, MONTH in the life of a person with CYSTIC FIBROSIS - try doing some of the treatments they have to do every single day - try swallowing up to 10 tablets with every meal you eat - try cramming in inhalers, Physio, Nebuliser, tablets, Insulin, bloods checking ... before you dash off to Work!  Try having a feeding tube shoved up your nose and being fed through it - it hurts - it's intrusive.

My 13 year old son can't run - he can't ride his bike - he can't keep up with his peers at School - he gets out of breath just walking up the stairs. His life is just one round of medication/treatments/Hospital visits - he eats nothing - he is fed Overnight through a Mic-Key Button in his stomache - he has no great quality of life for a child his age.    He deserves a secure future - he is bright, intelligent and deserves a life.


Images of my youngest son and just a small example of all he's had to endure so far in his life - more than most adults like me will ever have to endure.  Images of medical equipment/overnight feed/packed medication cupboard.  Give him a chance for a better future - PLEASE.  #YestoOrkambi

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