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Volunteer Advocate
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Advocacy in action: Rae-Anne’s story

My name is Rae-Anne Davidson. I am 28 years old and from Ayers Cliff, Quebec. I was diagnosed with Cystic fibrosis (CF) at the age of 4 years old.

I am writing this letter today from home off work due to my second CF exacerbation this year. I am just like any 28-year-old. I graduated University on the honor role in 2012, got a great job that I love and just recently bought my first house. I have a loving husband and a pretty cool cat if I may say so. However, I am unique in the sense that everyday unlike most 28-year-olds I have to think of my health first and foremost. I have my nebulisers to do in the morning, which take 10 minutes, 45 pills daily and my Tobi podhaler, I  also have my pep mask which takes 10 minutes and my hypertonic saline which takes 15 minutes in the evening . All these treatments are to help me meet my goal of   keeping as healthy as possible and out of hospital.

When the CF team sat me down recently and discussed a new drug that Health Canada approved called Orkambi I was excited that something new has come out on the market as I am currently doing all that’s out there. I have two copies of the F508del mutation, so Orkambi is an option for me. Access to Orkambi is vital for CF patients who have this particular genetic mutation, as it is a medication that will help our lungs by reducing over time the amount of infections and exacerbations. The benefits of not going into the hospital as frequently are numerous. If we aren’t going to the hospital, it means that we are healthier. Less hospital visits means fewer costs to the province for health care, as well as less personal and financial stress and time off work/school. I truly believe having Orkambi available will decrease use of hospital resources and this is important as a CF patient can stay upwards of one-two weeks in hospital in a private room, which costs about $1,000 per day.

For myself, access to Orkambi as quickly as possible is vital as I am slowly approaching the decision where I will be put on a lung transplant list. Orkambi can prevent lung damage from occurring, and slow the rate of lung function decline, so it could delay my need for a lung transplant.

I hope this letter sheds some light on what a CF person has to deal with mentally and physically every day to live a “normal” life and enjoy everything that life has to offer. Orkambi is a drug that has the possibility to alleviate some of the burden associated with my disease, and as such, I believe myself and others for whom Orkambi is indicated should be allowed access to this potentially life changing medication.

Rae-Anne Davidson

 

 

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