My thoughts on the corona virus
It’s crazy how much can change in such a short time. I am dedicating this blog post to my thoughts on the corona virus that has become a pandemic. I want to begin by saying that I hope everyone is staying healthy and calm during this time. It is easy to read the media for updates every ten minutes and begin to panic with everything that is being displayed. It is important to take care of your mental health at this time, so take a social media break if necessary.
One thing that I have been finding a need to distance myself from in social media, is reading the comments on news articles regarding the corona virus. I have seen so many awful comments like “oh the virus will only be really harmful to the elderly.” This is the most ignorant and selfish statement. First of all, the virus can be very harmful to our immune-suppressed, people with underlying conditions, elderly, etc. Every single person matters. How can the fact that someone is elderly be considered as “only.” Because someone is of a certain age, somehow their life is more disposable? In order to protect the most vulnerable, we need to all do our part.
I am also seeing a lot of negativity around the closure of schools, daycares, and workplaces. This is all temporary. Loss of work hours, childcare, and school will all end in time. What we can’t get back are the vulnerable lives that can be lost if people let miniscule inconveniences get in the way of following the necessary protocols in place for the health and safety of everyone.
I am going to change my tune here and now focus on cystic fibrosis. Please note that I am more than aware that the CF population is not the only population experiencing this struggle, but CF is in our lives so I can personally discuss it. With the arrival of the corona virus in Canada there has been a huge increase in awareness in hand washing, social distancing, etc. As a CF mom, I have been preparing for this since Wyatt was born. We keep hand sanitizer in vehicles, purses, backpacks, etc. Hand washing and proper sneezing is an everyday practice in our house. The fear that everyone has over this new virus is the same fear that we experience everyday with things like the common cold and flu. If Oliviah or Lucas is sick, they are instructed to try to stay away from Wyatt. We have friends that we go long periods of time without seeing because they have kids and their kids get sick and they respect the need to distance from us during that time. We have family that has to miss birthday parties due to a tickle in the throat that they do not want to pass along to Wyatt. This is every day for us.
Cystic fibrosis results in chronic lung infections that sometimes do not respond to oral antibiotics and require a hospital stay. This stay can be two weeks or longer. The financial strain that so many are feeling right now is something we have to constantly be prepared for. A two week hospital stay means deciding between working or being with Wyatt (and being with Wyatt is always the priority).
I am going to tie advocacy into things now. Advocacy for Canadians with CF is huge right now, since Canada is the only developed country to not cover the cost of disease modulator medications. A quick lesson on Cf medications: there are symptom management drugs (inhalers, digestive enzymes, antibiotics, etc) that simply treat the symptoms of cf (difficulty digesting food, inflammation in the lungs, infections in the lungs, etc). These do not stop the symptoms of cf from occurring but help to alleviate them. There are also disease modulators (orkambi, symdeco, trikafta, etc.). Disease modulators treat the root cause of CF. If you treat the root cause then you don’t get all the symptoms (or not as severe). Disease modulators come at a very high price tag (think upwards of $250,000 yearly). The newest disease modulator is called Trikafta. It is considered a miracle drug for cf and I have heard many people taking it compare it to a cure. It has the potential to make CF a lifelong, manageable disease instead of a fatal one.
Now let’s use a little analogy here that everyone can relate to right now, that I have seen many of the cf population use (so I take no credit for it). Imagine there was a vaccine created for the corona virus. Now imagine that all the countries around us decided to provide the vaccine to their citizens. Their quality of life was improving, number of people infected continually going down, and prognosis was good. Now imagine that the Canadian government said they would not provide this vaccine to its citizens. If you want the vaccine then you have to pay out of pocket and its $300,000. This is what we currently are experiencing in Canada. We watch our loved ones decline and there is a drug that could help them but the government stands in the way. The Canadian government has found it in their budget to provide over a billion dollars to the corona virus but they cannot find it in the budget to provide life altering medications to the CF population. If you would like to join our fight to change this please let me know!
I am going to end with again saying that I hope everyone is staying healthy and calm at this time. Next time you leave a grocery store, pharmacy, etc. please stop and thank the people who have to show up to work to make sure you have all that you need to be comfortable. Thank a doctor or nurse, or anyone else in the medical field, because they are so critical to making sure we stay healthy and well taken care of. Just be kind to one another. Stay home and take advantage of the free time we so often crave in the business of life. Color pictures with your kids, read a book, have a conversation. And please, when this virus is yesterday’s news, continue to wash your hands properly, stay home when sick, etc. because CF will still be affecting Wyatt and many other’s you could come into contact with and we will still have the same fears you are experiencing right now.
Patti Tweed
Sheralin, this is so well said. Thank you!