#orkambi

[thebeardstroker]

🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼

[hardcorehardigan]

@tomhardy Instagram

Petition: Make Orkambi available on the NHS for people with Cystic Fibrosis

https://petition.parliament.uk/petitions/209455

JANUARY 27, 2018

@tomhardy Instagram

JANUARY 28, 2018

Petition: Make Orkambi available on the NHS for people with Cystic Fibrosis

@tomhardy Instagram

FEBRUARY 2, 2018

[uniquegifts152-blog]

@nhs.england how can the health of our children become a postcode lottery? This drug could help save the lives of 50% of Cystic Fibrosis Patients in the UK The NHS wastes billions of pounds every year. Yet this life saving drug is not a necessity!? If Scotland can do it why can't England & Wales #orkambi #orkambinow #lifesavingdrugsnow #lifesavingdrugsnow #cysticfibrosisawareness #cysticfibrosis #cfwarrior #mychildmysuperhero #cfsuperhero #cflife #cysticfibrosissucks #cysticfibrosistrustuk #cysticfibrosisfighter #65roses #letsbreathe #wishyoucouldbreathe #yourhealthmatters #yourlungsmatter #respiratorydisease #invisibleillnessawareness #invisibleillness https://www.instagram.com/p/B2U5SDXlCmd/?igshid=rnyoh53w4w2l

[serenityinmist]

This is disgusting. Paying a bonus for ransoming the lives of people with disabilities

[tophealthtips7]

Cystic fibrosis: Plea for wonderdrug orkambi to be made available on NHS after diagnosis Cystic Fibrosis: Pensioners John and Frances Binns ask grandchild to receive Wonderdrug (Image: EXPRESS) And retirees John, 70, and Frances Binns, 68, told us about the NHS's Scottish stance for a deal for the treatment of "disgusting" and "dissolving now." The retired couple is the legal guardian for eight-year-old CR patient Tristan after his father Andrew, her eldest son, has been depressed.

[standardgazette]

Cystic Fibrosis: UK Protesters Call For The Availability Of Drug Orkambi

Cystic Fibrosis: UK Protesters Call For The Availability Of Drug Orkambi

By Ehi Ekhator Parents of Cystic Fibrosis sufferers took to the street of London on Monday calling on the government to make new treatment available on the NHS. In 2o16, the National Institute of Clinical Excellence acknowledged drug Orkambi as a viable treatment for CF but refused to recommend …Cystic Fibrosis: UK Protesters Call For The Availability Of Drug Orkambi

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[lucadezzani]

Orphan Drugs

All you need to know about Orphan Drugs and the companies actively involved in developing and manufacturing these important therapies. Analysis of the 10 Best Selling Orphan Drugs 2018

An orphan drug is a pharmaceutical product targeted to rare diseases or disorders. According to law, rare disease patient populations are defined different for different countries. For USA, the rare disease…

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[adventureswithartie]

It hit me tonight

What if husband doesn't see our children grown up?

I know it's been triggered as there has been a debate yesterday in UK parliament about allowing a drug called Orkambi to be available to patients with cystic fibrosis. This drug is widely available worldwide and treats the cause of CF - not the symptoms. It's not a cure, but it can slow down irreparable lung damage (which ultimately results in lung transplant or... well death.)

Life expectancy for someone with CF is 40.

Husband is 33.

I know all these facts, I know what I signed up for when I met him and we had children. But I still feel that with my pure determination and stubbornness, that he will live way beyond any life expectancy. I'm aware that isn't exactly rational.

But during the debates they talked about how lung decline can happen so quickly, over weeks, not months or years. And I don't think I has grasped the enormity of that. Husband's lung function is around 82% currently and relatively stable.

What if? What if? there are so many of those and I just feel the enormity of it. I need him to live for me, but I need him to live for his children. I was in my 20's when I lost my parents, an adult and the thought of putting our children through that premature loss makes me feel such despair.