A Tale of Quality vs. Quantity...

Hello and welcome to our November tale. I'm Trevor aka T Man and storyteller of this blog now, for over 10 years. 

Our subject comes from the advocate deep down inside of Brenda. She is actually referring to what is about to be shared, as righteous indignation. Part of Brenda's brain tumor journey has been living with frontal lobe syndrome, where she reacts quickly with anger or tears, when she sees someone being wronged or treated unfairly.

As you know we are in the midst of a global pandemic, which has been going on for far too long. In dog years, it would be much worse. BOL Pardon me, I had to get a little humor in there, before we get to the meat of this tale. I actually would say that Brenda has a bone to pick with what is going on in relationship to access to some medications or should we say, no access because they are not available. 

Here we go! As you know the Corona Virus or what is referred to as COVID-19, is having those who have contracted the virus and are likely hospitalized, utilizing some medications that are used for other conditions or diseases. It is possible to have a medication's use serve more than one purpose. Case in point and then we will continue with our tale. Contraceptives can also be prescribed for endometriosis or acne. Their purpose is not just for birth control. You get the idea. 

So the real kicker is that these medications Hydroxychloroquine or plaquenil, which is a common brand name and Actemra which is a biologic. We are sure there are more, but these are the 2 that Brenda is aware of. I think you know where we're going with this. 

After this blog post is published, we would love to hear your stories or experiences with having problems accessing your medications. We know there has to be others experiencing this. 

Brenda was well aware that plaquenil is prescribed for rheumatoid arthritis (RA) because that is the medication that her first rheumatologist was initially going to prescribe. In her case hers was advancing quickly, so they decided on another medication instead, which just happened to be methotrexate. 

She also reached out to an ophthalmologist that she worked for, as she was told some information that didn't seem correct. Turns out Brenda was right. She was told that if she was put on plaquenil that she would only need visual fields once a year. It would have been twice or every 6 months. As you know, Brenda does her research and if it doesn't seem right, she will pursue it further. 

Brenda was hearing that these medications were being stockpiled for hospital usage. So what was going to happen to those who have been taking these kinds of medications for possibly years and all of the sudden you have no access, because they are unavailable? This makes Brenda angry and she even shared that during their recent robust discussion with the CreakyJoints Patient Council. Brenda has been a member since the start and they were talking about what was happening with these medications. 

That was all the encouragement Brenda needed and she even mentioned that she was thinking of doing a blog post on this very subject. The title was the tricky part, but when you think about it, QUALITY OF LIFE is essential. The Quantity becomes second fiddle, when you're dealing with a chronic illness. You do anything to be comfortable. 

Brenda has been taking a biologic for 20 years and currently is using the auto injector or Sure Click, so it can sting while being administered. For some patients that's too uncomfortable and they prefer infusions. Unfortunately with the pandemic, some were afraid to be in public or go to hospitals to have them done, so they were forced to change the way they have their medication administered. Going back to possibly having to use a vial and drawing up into a syringe, when you have arthritic hands is a difficult task. The only other alternative, would be an auto injector, but as we said they can sting. Brenda knew of some patients when this first came out, they went back to the syringe, as they couldn't stand the burning sensation. 

We are aware of one biologic that has taken care of that issue, where there is a buffer. Brenda knew of someone who took it and was quite pleasant to inject. This is where quality comes in for Brenda. She is willing to deal with that little sting each week, as opposed to having to go back to syringes. Her fingers have some joint deformity and this can make it difficult to administer. 

If you're fortunate to have a partner who you live with help with your injections, as that was one of the stories that was relayed recently, that is wonderful. Some don't have that luxury and for some having to  leave their home brings on anxiety. 

So why is it okay that these life-saving medications get to be used for COVID-19 patients? It's a fair question. The thing that makes Brenda angry is the fact that some refuse to be vaccinated. If more individuals would have been vaccinated, it's possible that it wouldn't have had to come to this. This has been going on since at least summer and some patients are being told nothing. 

There is so much information out there that is false, when it comes to the vaccines. Brenda was even told that she had no idea what was being injected into her body. Don't even go there. Brenda does her research and had a robust conversation with her rheumatologist last summer. She even educated him on the fact that there were going to be 2 injections, something he was not aware of. He encouraged her to get the vaccine and Brenda has since had her 2 vaccines, along with a booster. 

Brenda knows this has to be going on all over the United States and possibly other countries, where patients DEPEND on these medications for their QUALITY OF LIFE! 

Brenda knows that some of these medications can cause serious side effects. You weigh the quality and the quantity in these situations. It's an individual decision for each. Brenda is aware that her biologic could somewhere down the road, cause serious problems. She chooses quality over quantity every time. 

I'm sure her fellow advocates and friends who live with these various conditions and chronic diseases, have the same mindset. 

Brenda has known that some have been told to stay in their homes, if they are that afraid of being out in public and getting the virus. Being alone and isolated can actually be worse than dealing with a chronic illness. 

Do the responsible thing and get vaccinated. We are tired of sugar coating this. It shouldn't have to be this way, that getting access to your medications becomes impossible. You realize, that not being able to take these medications, could cause someone to flare badly or have their disease progress even more. 

Brenda feels it is unfair for those patients who are choosing quality of life to be cast aside and treated like they don't matter. That is how they are made to feel. 

You find that these medications could work for treating COVID-19, but nobody bothered to check with those patients who choose quality vs. quantity how it would make them feel, it they were no longer available to them. Some found this out, when they went to their pharmacy thinking they would be getting their said medication. Others were told by their rheumatologist. 

Brenda went through this with Enbrel after the first year. They had a hard time keeping up with manufacturing, because it was so popular. Brenda found a workaround and that is when she got connected with CreakyJoints, so you understand her passion and how this tale came about. 

This was our pawspective. See what I did there? BOL Brenda does understand your frustration and yes, even your righteous indignation. You have a right to be angry and your QUALITY OF LIFE MATTERS!

We will leave it there. This has been another T Man Production. 

~T Man Barking off~