Biosimilar insulins and how things changes. Horror.

I think the diabetic community is too quick to panic. The online community tends to be filled with diabetics being very strict about everything they do and clinical about every aspect of their care. There is nothing wrong with that of course but I think often it is forgotten that the famed ‘doc’ is the minority. I fall into the middle ground. I tweet and I blog and I care but I don’t have the same goals many others do. I don’t dream of HBA1cs under 6 and I certainly did not want a pump until it was the only option available for me to have a close to type zero life. If I did not have my dawn phenomenon I would swap my pump for injections in a heartbeat.

Pumping is stressful. Every three days you stare DKA in the face. The set change may work and it may not. It may take many hours to spiral out of control and it may take only a couple. The spiral may be masked by things you ate before the change, glucose levels before the change, things you need to do right after the change. Every level that doesn’t look perfect after a set change makes me fear the set did not work.. But if it did and I change it, the next one might not work. What if they both don’t work? What if I’m so anxious about blood sugar levels that I’m screwing up my own life?

Sadly, these thoughts are common.

Sets fail. They come off production lines and then they rely on being in the exact right place when the button is pressed. They screw up. Life is not perfect.

People seem to forget that. It is I WANT THIS and I WANT THAT and in Britain certainly only their national insurance to pay for it? Technology costs money. My blood kit is old. Ancient really. I have had it a whole …well five years at least. No…not the same type, the same machine…People seem to swap kits like socks these days and expect doctors to get their prescriptions changed in jig time too. Thing is…those things take time. Letters and emails get into queues and piles. Your demand for a different type of test strip might be sitting under a report on how effective cancer treatment is and on top of a set of blood tests for a high risk pregnancy while someone else needs a referral to X Y or Z clinic. Add that to the GP that is sick that week and the fact that normally they could use another anyway and they have patients to see and prescriptions to approve and yeah, sometimes it takes longer to get that new kit up and running. That is why pump clinics try get the new insulin on the script early and pump starts begin with a year of supplies before they even get near the machine.

Diabetics that have had this disease for decades are still alive. I’m pretty sure we can survive on certain glucose machines for a few months and be grateful we have them at all while we are at it. The NHS was meant to do it all. Body. Eyes. Feet. Teeth. That fell apart very quickly. It does not have to give you everything that you want the instant that you want it. That is what Bupa exists for. The Western World forgets how privileged it is. The thing is, a lot of modern tech is there to make things easier. It does not exist to magically make things possible. We can test and record on any meter. Many meters are just as accurate as the ones that record everything under the sun and talk to your computer to write out spreadsheets about it. People want a disability to be convenient and the fact is we are disabled, we’re always gonna be, and that is not convenient.

Treatments change. Often. A lot. Diabetics think that means insulins and such. It doesn’t. Our treatments also include the way Doctors try to help us control our disease, the insulin we use to do that which includes the doses and types and times we take them. Treatment changes mean whether taking lantus in the morning or at night, in one dose or two, or whether we give it up all together for a shorter acting long acting like insulartard.

As usual it seems diabetics are going to panic before looking more deeply into what they are being offered. Biosimilar insulins. It sounds scary but then so did ‘cloned’ insulin when I started that sort of stuff. It turned out to be humulin and such and greatly improved my life. My outlook on diabetes is if it has made it as far as my hospital then it is worth at least trying it. Pharmacists and such are not idiots. Neither are the people who approve things for the NHS though sometimes it seems so. The times they appear in the press are a fraction of the time. Even the ‘cheapest’ insulins are big money because so many people are diabetic and the number only skyrockets, especially with more type twos now being treated with insulin. We’re not being shafted.

Think back to the insulins YOU had to take when first diagnosed. Are they the ones you take now? Were they even all available then? Did you count carbs the same? Did you count them at all? Did you get to choose when to eat or did someone in an office decide that for you?

Things change. Insulins change. Kits change. Ideas change.

We cannot judge these biosimilar insulins until people in the UK are trying them and believe me there will be volunteers. For every D comfortable with their current insulin there are several ripping their hair out and wondering why it Just. Wont. Work. Because it works for everyone else right? Sure they say it will be cheaper but nothing suggests so far that it will not be as effective.

Does where the money goes really matter? We will only take this insulin if the savings go to US. That sounds a rather bitter way to think about it really. Any savings the NHS can make benefits us all in the long run as long as the people who are running it happen to have a conscious. Sure I would love any savings to come to us but really I just hope there are savings.

The thing I see not being addressed is the reason for these insulins. Patents. They are going to run out. So the insulins we have are not safe and they will not stay, not as they remain now. Not as far as things suggest now. Change is coming. We can either embrace it and engage with it and work out how best to make it work or we can ….get ourselves in a right faff.

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Sign to help Endometriosis.

endometriosis

Please sign this petition to try and force the government in the UK to take action in getting a quicker diagnosis for this disease. It is a horrible disease impacting 1 in 10. At least. Many don’t know they have it and never get tested. Three members of my family do not have official diagnosis but everything fits.

I went 10 years without knowing. I don’t want to have children and maybe that is a good thing because my fertility will have been impacted. It might be by not much and it might be serious. I don’t know. Because people don’t get tested or ask or think that maybe being in agony is nothing something you need to ‘get over’, or just ‘take something and get on with it’. Maybe it is is serious and maybe we need to do more.

The fact that every part of the computer I type that word into tries to spell correct it to something else as if it doesn’t exist. It does. For 1 in 10. At least.

5 Minute Friday – Celebrate

I’m trying a new thing where you get a prompt for each Friday and write for 5 mins without editing it. I’m surprised at how much I make sense. The prompt was ‘celebrate’ and I focused on my depression. It has been a berk recently.

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I want to celebrate the progress our youngest dog has made over the past few weeks when it comes to walking. Doug is just over a year old and we adopted him from a cousin at eight months or so. By then he had already engrained in some habits in regards to pulling on his lead. He had grown up on an extendable lead which we do not use as we feel it does not let us have enough control. It also means that if the dog, for example, was spooked and ran into the road it would be far harder to get him out of harm’s way. Even the best behaved dogs get scared sometimes so that is why I like shorter leads. Training Doug to not pull and to not growl and bark at other people has been difficult and a variety of tactics have been used. At first walking him with Nico was good because Nico walks really well on a loose lead behind me most of the time. It gave Doug an example to follow. But his fear is a real issue. Senna has got over her fear but when she was younger she would hide behind Nico, the older and bigger dog. Doug would get aggressive and defensive.

My depression tried very hard to blame me ever time Doug reacted in a way we did not want him to. I wasn’t doing enough. I wasn’t good enough. I was stupid. I was a failure. There were days I did not want to take him out at all or even Nico because my brain said he would pick up on my lack dark feelings and start acting up. He didn’t. Once Nico is out the door he is perfect. (Getting him out is a work in progress.)

I kept trying though. Somehow I won the battle of wills with myself. At first he’d walk nice in patches. Man, it could take half an hour to get round a block if we stopped every time Doug pulled until he relaxed on the lead again. Then he started walking well after he had pooped. This was all of course dependant on there being no one or nothing around. We reassured him every time we saw someone, got down on his level if needed and spoke to him.

So this Friday I’m celebrating the fact that yesterday I took Doug to the vet (he’s fighting a really bad ear infection) when the schools were coming out and it was super busy with moronic children walking backwards (wtf) and screaming and whatever. There were buggies and small kids who jumped out at him. There were other dogs around too.

He was brilliant.

He just walked, without pulling, and only growled once when a small child reached out and tried to grab him only to be grabbed by their guardian at the last minute. It was not an aggressive growl either, more the understandable ‘what the fuck?’ sort of one.

He is not perfect and this afternoon he pulled a bit again but he can do it! He’s learning! We can do it! So bugger you depression, Doug and I got this! Or will get this….eventually.

Hiding Bad Days

A quick blog post brought to you by the fact that in an hour I and my parents are taking my grandparents out for dinner to thank them for helping me out when I was so ill. Overnight my blood sugars went from 8.0 to 19.0 because, you know, it felt like it. Sometimes the dawn phenomenon just wins. As a result my complexion is very pale today and under my eyes I’m rather purple looking. This brings up a few things both related to chronic illness and feminism and the ideals women are held up to.

Society says that I should not go out looking as I do. I should wear enough make up to hide the fact that I am unwell. Because I happen to be a female. I hate that. I should not have to do anything. People should get used to seeing people with bags under their eyes. Let people know you’re ready to murder anyone in your way and all of that jazz that are spread on motivational posters. Yet there is always this pressure to hide my disability more than it is already hidden. Diabetes is not a life sentence but in order to avoid being discriminated against and pitied when we are fully capable it seems we as a group have taken to hiding when we cannot. We cannot scare new diabetics by showing the bad times. There is amputation and those that climb mountains and no in between shown. That doesn’t sit well with me. When I’m capable I’m fine. Sometimes I can function without being great. Sometimes turning me on and off again with a long nap is required.

So, I don’t want to have to wear all this make up to go out but I put it all on anyway for others problems society has. People have this chronic need to tell others when they look different from usual. No one who is unwell or has any form of chronic illness or disability wants to be told outright ‘you don’t look well.’ Most of us do in fact have access to a mirror or at least a front facing camera on a smartphone and we are very aware of the days when our faces lose colour and our eyes bulge and we look ‘unwell’. It is not nice to get it pointed out. Then there is the dreaded ‘you look tried’ which is meant to be the polite way of telling someone ‘you look shit, mate’ but since we all know what that means we don’t want to hear that either. Sometimes that is worse because it is harder to turn around and tell someone to mind their own business.

My gran is very much one of those who would tell me I look horrific and then start asking me lots of questions about what my diabetes is doing when I really just want to have a nice meal. So, I’m wearing my makeup and a lot of concealer as well as a lot of eyeliner to mask my panda bags by creating intentional panda eyes. I’ve also painted my nails bright green so she will notice them instead. Men are also under this pressure when dealing with illness but I do think there is an added layer of it when it is a woman.

I want to help students

Tonight I have had all sorts of thoughts about students trying to break into the treatment of diabetes. I have spoken before about why say yes to students is important, why letting them into appointments with my Doctors is important. Textbooks tell them so much. In fact I think textbooks present a rather narrow view. There is a ‘textbook way’ that diabetics are aware of and that a lot of us hate. It is the way we are ‘supposed’ to be. It is the way many of us are not. Textbooks talk about chemistry and biology and how cells break down other cells. Depression, anxiety attacks, eating disorders, epilepsy, autism, and wow I could go on for days. They do not appear so easily in the textbooks and they certainly cannot claim to show how every person with any of those problems or anything else will react when being diabetic.

You can spot a newly qualified Doctor a mile off. They are timid and check notes extra times and ask questions like statements in case we flip the table and launch them out of the window. It is awkward all round. I don’t want them to feel so nervous. I really shouldn’t be that scary.

Students that appear in my apps sit in a corner wrapped around their notepads saying nothing until prompted. I try smile and sit openly but they look shy and scared and rarely ask anything, well, relevant. I always leave thinking ‘that was not what you wanted to ask me’. So what did they want to ask? Would they ask somewhere more comfortable?

So, I’m reaching out to twitter to ask twitter and doctors I’m aware are there to see if there is something more I can do. Maybe it involves going to a university and answering some questions now and then. Maybe if involves signing up for an email list where students can ask me things in an anonymous way. I want to answer. I want to help. In five or six or seven years they will be sitting opposite me at a desk and I will find myself the older person and they will have to steel themselves before asking me a question. It is what my aunt lived through and my mum after her and I don’t want it to be me next. I don’t want them to worry. Ask me. Ask me awkward questions. Ask me sexual questions. Ask me mental health questions. Ask me anything that helps YOU become the BEST you can be in this field.

And yeah for any students in the field that read this, get in touch. I’ll reply.