Cottingley mum Katie’s angry at medicine verdict

Bradford Telegraph and Argus: Katie Conway and son Charlie Katie Conway and son Charlie

An asthma patient has spoken of her anger at a decision which could see a drug which has improved the quality of her life withdrawn from the NHS.

Katie Conway, 30, of Cottingley, has suffered from lung problems all her life after being born ten weeks prematurely and has been on steroid treatment and has used a nebuliser since being a baby.

“I was always in hospital with it as a child,” said the mother-of-one.

“As an adult I did work full-time and I loved my job working for Sure Start but I had to give it up about four years ago when I had a deterioration in my condition. The attacks were unpredictable and scary.

“My lungs become really tight and it feels like an elephant is crushing you. I can’t speak or communicate when having an attack.”

It was when she found herself in hospital every month that her doctor, Dr Dinesh Saralaya, a consultant respiratory physician at Bradford Teaching Hospitals NHS Foundation Trust, suggested she try the drug omalizumab, also known as Xolair.

He has been leading trials of it in the city on behalf of the drug company Novortis.

Miss Conway said: “It is given as an injection in the arm once a month.

“I still have a nebuliser but it has reduced my hospital admissions and the number of attacks I have.

“It has not stopped them completely but it has dramatically reduced them and made it possible for me to be able to reduce the amount of steroids I have to take. Before I was on high doses and that is not good.”

Dr Saralaya’s trials demonstrated that long-term treatment with omalizumab significantly improved a range of outcomes for his patients with severe asthma, with ICU and A&E admissions slashed and allowing patients to enjoy a significantly improved quality of life.

Despite these results, in November last year, the National Institute for Health and Clinical Excellence made a draft recommendation that the drug should not be made available on the NHS saying it was not as clinically or cost-effective as was first thought.

“It makes me feel angry,” said Miss Conway, mum to two-and-a-half-year-old Charlie.

“It is people’s lives we are talking about and it not fair to allow people to suffer like I did and not give people the opportunity to have a better quality of life.

“It is all to do with money and there are so many people with lung problems who will suffer.

“I could understand if it was not beneficial but from speaking to other patients, it benefits nearly everyone who takes it.

“It means I can be at home most of the time rather than being in hospital a couple of times a month.” Nice has a second appraisal committee meeting to discuss the drug on Tuesday, January 22 and final guidance is expected to be published in April.

Miss Conway added: “I just hope that they come to the right decision about it.”

Comments (6)

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9:12am Sat 5 Jan 13

Joedavid says...

T&A are there no alternative products?
T&A are there no alternative products? Joedavid

10:43am Sat 5 Jan 13

Willard says...

Joedavid wrote:
T&A are there no alternative products?
I think that this stuff is given as a last line of help when all the others have failed. This lady seems to have been suffering for years. She can still have it but now that NICE has made it's ruling it means that it will be a brave Doctor that risks the chances of prescribing it. Maybe Novortis will provide it for her free on compassionate grounds, I am sure they can afford it.
[quote][p][bold]Joedavid[/bold] wrote: T&A are there no alternative products?[/p][/quote]I think that this stuff is given as a last line of help when all the others have failed. This lady seems to have been suffering for years. She can still have it but now that NICE has made it's ruling it means that it will be a brave Doctor that risks the chances of prescribing it. Maybe Novortis will provide it for her free on compassionate grounds, I am sure they can afford it. Willard

7:19pm Sat 5 Jan 13

The obvious says...

This is a joke. Stuff that makes you better is withdrawn.

Screw the dogs who ban this stuff. Go abroad and have any medication you want. This country is truly fecked if the doctors are not allowed to improve the patients life.
This is a joke. Stuff that makes you better is withdrawn. Screw the dogs who ban this stuff. Go abroad and have any medication you want. This country is truly fecked if the doctors are not allowed to improve the patients life. The obvious

7:20pm Sat 5 Jan 13

The obvious says...

Ps we can't give this medicine to you but we will treat a load of drunks and drug addicts.

The entire system stinks.
Ps we can't give this medicine to you but we will treat a load of drunks and drug addicts. The entire system stinks. The obvious

12:13am Sun 6 Jan 13

lazybeat says...

absaloutley baffling, they withdraw something thats works and minimises hospital addmissions which cost around £2000 a day, not including the complete treatment costs. the decision makers who probably dont even specialise in the field just judge on immediate costs not the overall cost of the patients deterioration. these amatures are what will bring the nhs down.
absaloutley baffling, they withdraw something thats works and minimises hospital addmissions which cost around £2000 a day, not including the complete treatment costs. the decision makers who probably dont even specialise in the field just judge on immediate costs not the overall cost of the patients deterioration. these amatures are what will bring the nhs down. lazybeat

2:21pm Sun 6 Jan 13

Willard says...

Novortis could lower the price so that the National Institute for Containment of Expenditure no longer worry about the costs and allow it for specific difficult to manage patients.
Novortis could lower the price so that the National Institute for Containment of Expenditure no longer worry about the costs and allow it for specific difficult to manage patients. Willard

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