Thursday, 9 June 2011

Stupid doctors. Stupid needles. Stupid drugs.

This post has nothing to do with diabetes. I just need to rant.

Someone I love very dearly got a needle-stick injury on Monday while assisting in stitching up a patient after delivering a baby. This patient is HIV+ positive. The needle was in the other doctor’s hands.

Stupid doctor.

Stupid needle.

Now this person has to take anti-retrovirals to stop him becoming HIV+. I’m grateful he can take the drugs. I’m grateful they’re available, and they can protect him from this stupid, horrible disease.

But they’re making him so sick. They’re wrecking havoc with his body, his stomach, his head.  I can’t call him because he’s too busy puking.

Stupid drugs.

And he’s in a city on the other side of the country. So I can’t be there. I can’t do anything to help. I can’t fetch him water, or nausea pills or anything.

And I feel so useless, and so frustrated and so angry!

And I’m not even the one who’s sick.

Stupid doctors. Stupid needles. Stupid drugs. Stupid, stupid virus.

I hate this.

Wednesday, 8 June 2011

Is that a Real Low? or do you just want chocolate?

One of the best things about this country is the weather.  After spending two months in Paris in the middle of winter last year, I have a huge appreciation for our beautifully sunny, temperate and (mostly) non-soggy winters. (Although I do sometimes wish there was somewhere we could go to make snow angels!)

Take this winter for example- April and May felt like extensions of summer, with autumn and chilly nights slowly creeping into the mix at the end of May.

But not these past two weeks - it feels like winter has hit us in full force with waves of cold fronts, icy wind, and today; rain.

I’m not that upset about suddenly having to pile on the layers. I do, however, have a complaint to file with whoever decided to crank the winter up to freezing without letting us adjust to the cooler temperatures first.

You see, while I know that it’s just a cold front, that it will pass soon, and that we’re only about two months away from spring anyway; my body is not taking this sudden change so calmly. It is apparently concerned for our continued survival, and has shifted to “stockpiling” mode. You know, that mode where you’re suddenly always hungry and craving rich stews and starchy meals and soups and cookies and chocolate and anything else that might help, just incase of hibernation?  (Or is this just me?) So, even though I’m eating just what I normally would (or even a little bit more), and I know that this is enough,  my body insists on telling me its starving. One hour after a meal.

You’re lying, body! I know it! See that empty lunch box? That, right there, is proof that you have been fed. Now stop being silly and get back to work.

Except... that starving signal tends to come in the form of that hole-in-the-stomach kind of shaky feeling. Yup, that exact same one I get when I’m starting to feel low, just minus the fuzzy-head feeling. And I get a little freaked out, walking around the whole time feeling like I’m almost low. And I’m wasting so many test strips; testing to make sure I’m really not low, and finding out I’m 7.5 mmol/L (about 130 mg/dl) or something similar. 

The problem is, more than once in the past few days, I’ve stubbornly walked around with this fake-low feeling, only to test after a few hours and see a real low staring back at me from the glucometer screen. Darn it.

So, dear body, here’s the deal: how about you stop telling that you’re low and want chocolate, when you’re clearly not; and I’ll be able to more easily make sure I give you sugar when you really do need it? Ok? 

Sunday, 5 June 2011

Victories in progress

Now that I’ve got the bulk of my medical aid story of my chest, I can give an update on that D-doc appointment I went to on Monday. Overall it wasn’t too shabby...

The last time I went there, it had been such a long since my previous appointment that the nurse/assistant/receptionist lady gave me an evil look and a talking-to about my Diabetes (I guess I deserved it). This time she greeted me with a smile, to my relief. Strange how something small like that can make a difference. And I didn’t mind the two hour wait to see Dr S that much- I took the opportunity to get stuck into the Solzhenitsyn book I found at the flea-market a while back (I have a soft spot for old Russian literature, I’m not sure why).

Just as in my last few appointments, the first thing Dr S asked was if she could put me on a pump yet. It was so good to be able to answer “Yes! At least, I think so, but not yet. I have to wait 2 more months.” 
I told her about switching medical aids and we had a good rant about BM (she’s not much of a fan either. It turns out I’m not the only patient, or doctor, that they mess around).

We worked through all the questions I had. I’ve been struggling with slow absorption and prolonged action of my Humalog, which isn’t all that helpful when the point of being on rapid acting insulin is that it’s meant to in and out of your system in 2-3hours. Working with Dr S’s theory that I may have built up an antibody response to the Humalog from being on it for so long (about 10 years I think), she’s given me a pen of Apidra to try out. So I’ve been rocking Apidra since Wednesday (and by rocking I mean bouncing between highs and lows and more lows as I try to work out the insulin:carb ratios and correction ratios and all that. I know they’re meant to be the same as with Humalog, but I also know that for a lot of people they aren’t) and I think I’m starting to get the hang of it. It definitely works faster, which is what I was looking for. 

My Lantus has been knocking me for a six with night-time lows a lot lately. I can blame my increased exercise levels for that,  but after decreasing the dose by 3 units, I’ve been stuck with what else do to about it. Other than snacking more at night, apparently not much. At least, not until I get a pump and can fine-tune a night-time basal rate. Great :/

On the topic of my increased exercise – it’s worked!! Along with the carb counting and all that I wrote about last week, it’s brought my HbA1c down! Ok, only by 0.6%, but it’s the first time my HbA1C has been below 8% in, well, quite a long time. It’s still needs work, but I’m counting this as a victory in progress J

I’ve saved the best bit (ok, maybe not the best- the A1c drop is pretty darn cool for me- but this is the bit I’m the most excited about) for last. Half way through the rant about BM, Dr S’s eyes lit up. She told me about a patient who had an old pump she hasn’t been using since she’s upgraded last year. This patient had lent the old pump to another patient to use while she was pregnant, but this patient couldn’t keep using it now, because her medical aid (BM. grrr.) wouldn’t pay for the infusion sets. So what this boiled down to was that, if I could get my shiny new medical aid to pay for the infusion sets, I could use this spare pump, while I stick out the last two months of my waiting period. woohoo!

So I left the appointment armed with a prescription for infusion sets. I called DH on Tuesday morning, e-mailed them the prescription, and waited. I got an e-mail bright and early on Wednesday- DH has agreed to pay for the infusion sets! After my experience with BM, this is nearly unbelievable for me. DH has an obligation to cover my insulin and tests strips, as part of Prescribed Minimum Benefits for my diabetes. And from all my prescriptions, they can clearly tell that I’m on MDI and not a pump. So as far as I can work out, they have no obligation to cover infusion sets if I’m not on a pump yet. These supplies aren’t “essential” to me, not at this stage, yet. But they’re paying for them anyway. 
WOW. I have an urge to go get “I heart DH” stickers printed.

So now all I’m waiting for is that other patient to drop of the spare pump at Dr S’s practice, and for the rep who does the pump training to get back from Switzerland, so I can learn how to use it.  Both should be done by the middle of this week. I’m so stoked- I should be on a pump within a week or so!

The spare pump I'll be getting now is the Accu-check Spirit. I’ve got mixed feelings about this detail- I’ve heard less-than-great reviews about it. And, it’s not the pump I ultimately want- I’m super keen on the Medtronic Veo, it seems to be considered more reliable, and it has the option for integrated CGMS. But, seriously, any pump that anyone is willing to give me is better than no pump, so I’m not going to complain. I can get working with the Spirit for now, and if I want to switch to the Veo in a few months, I should be able to do so. And of course, the Spirit can be passed on to whoever else needs it.

I’m super-grateful, and super excited for all this. And constantly amazed at how things seem to just be falling into place now. More victories in progress. 

Soli Deo Gloria.
Because, even if we tend to forget it, ultimately it’s all up to Him.

Saturday, 4 June 2011

The Medical Aid Rage

Medical aids have taken up a lot of my time, thoughts, money and energy lately. On the one hand, I’m ok with this, because I think it’s pushed me to find a better solution to the problem, and somewhere in the process stuff has settled in my own head about my health care. On the other hand I am definitely not ok with it, because, ultimately, I suspect all medical aid schemes of being devious, sneaky money-draining leeches, and I vaguely resent that I’m forced to admit that I need them, even if that is the case. 

Here follows the previously alluded-to tale of my medical aid rage, of why even the mention of my former medical aid raises all my hackles and I have to resist the urge to hiss and snarl, and of how, ultimately I think I’m in a better place because of it all. 
It's a bit of a long story, but bear with me.

[a note: as much as I would dearly love to name and shame, I’m going to rather refer to the medical schemes, new and old, by initials. Mainly because I’m still trying to sort through issues with the old one, which may involve me taking them to legal bodies. And I don’t want to risk stuff written here making those processes unnecessarily complicated. That said, the initials used correlate to the scheme’s actual names, so if you really want to know, just match them up with a list of South African medical aid schemes]

I joined a medical aid for the first time in my life in April 2008. The choice to go with BM seemed pretty straight forward- they were considered one of the top schemes in the country, and they had a good-looking plan option specially for students and young adults. Plus, according to the pamphlet and their advisors, this plan was the only one where medication for chronic conditions was covered “in full”, as opposed to out of the medical savings account as with their other plan options. Well, sounds good; I was in the final year of my undergraduate degree, and Type 1 Diabetes definitely counts as chronic, so it sounded like this plan would have me covered. Awesome.

Or not.

After the standard one-year waiting period on any claims for known preexisting condition (ie, my Diabetes), I could finally start trying to get BM to pay for my D-meds and other care. With very few exceptions the operators at the BM call centre, and those at the call centre of the network they subcontracted half of my plan management to, were at best unhelpful, uninformed and uncommunicative; at worst they were just down right rude and insensitive. It took me another year and a half of being placed on hold and being shunted between different departments and different call centers, before I finally worked out which call centre to call for which claims, which forms I needed to fill out, where to get them from, who had to fill them out, and where to send them. Getting necessary information out of these people was worse than trying to get blood out of my lancet-tormented fingertips.

I finally managed to get all the necessary paperwork done to register for BM’s “Chronic Patient List” in January this year. I had to get my GP (not my D-doc, but my GP. They would only accept papers from the GP, even if he wasn’t the prescribing doctor. Go figure) to request funding for my test strips and each of the insulins I use (Humalog and Lantus), specifying the amount I use per day. BM funds medication according to a chronic medicine formulary, which specifies the drug name, but not amounts. He also had to write a motivation as to why I needed to use Lantus instead of Protophane, as the only long acting insulins on the formulary were Protophane and Protophane mixes.

I had no feedback from BM about my forms until I finally called them in March, when I needed to go buy more insulin and I wanted to find out if they would pay for it at last. That call ranks as one of the most unpleasant phone calls I’ve ever had. After the usual shunting and being on hold, I was finally put through to a very rude woman who rattled off what they would and would not pay for:
            -1x 5ml vial of Humalog per month.
            -30 syringes and needles to use with the Humalog
            -1 box of 50 test strips every two months.
            -They would not pay for my Lantus at all.

Wait… 5ml vial of humalog? But I don’t use vials. I haven’t used vials since I was 4 or 5 years old. I use the cartridges that fit into the pens.  I know my GP specified that I use the cartridges. I can’t use the vials, I’m on the run too much, they’re not easily portable, they’re inconvenient and impractical, I’ll mess up my dosing and get infections. Besides that, by my calculations I need closer to 10ml a month, double what you’ve just stated. And the syringes? You know those are single-use only right? So, you’re giving me enough syringes to inject myself once a day?  Are you aware that as a Type 1 Diabetic I have to inject myself every time I eat  (besides my basal lantus shot once a day). That’s at least three times a day! Not to mention that the last time my mother tried to buy syringes for me- we were having a bit of an emergency- she was accused of using drugs and supplying her children with drugs! Are you serious?

-No, they didn’t care. That was what BM would pay for, and that’s all they would pay for.

Ok, so what about the Lantus? Why isn’t that on the list?

The lady informed me that BM would only consider funding non-formulary drugs if they were provided with a valid clinical motivation as to why the patient couldn’t use what was on the formulary.

If the fact that Protophane is a flipping old drug, has an irregular action profile; and causes hypos and hypers all over the place, AND the fact that I was on protophane when I was younger; my BGs were a nightmare to stabilize, and I have been much more stable since I started using Lantus 8 years ago- if all that is not a valid clinical reason for me to not use Protophane, then please tell me what is!

Apparently as far as BM is concerned, if I am not allergic to one of the components in the drug, and have never been hospitalized from an adverse reaction, such as a severe hypo, while on the drug, then they don’t see why I can’t use the drug.

(Seriously, BM, you'll wait for a patient to be hospitalized before letting them try a different drug??)

And the test strips?! 50 every two months? That allows me to test my blood glucose levels less than once a day. What the--?? What medical professional would ever recommend that anyone with diabetes test their blood sugar less than once a day? The minimum I’ve ever been told is 3-4 times a day. In practice I’m testing 6-8 times a day.

They wouldn’t budge. According to their formulary, a box of 50 test strips every 8 weeks was all they would cover.  In their opinion, if the patient’s Diabetes was stable, that’s all the patient should need. Oh, wait, if the patient is sick the patient’s doctor can write a letter motivating for them to provide 50 strips every 6 weeks, until the patient is feeling better.

(It was round about at this point that I started wondering if BM are actually trying to kill people.)

I’m a non-confrontational person. I keep calm. I don’t freak out. I meekly thanked the unhelpful lady for her time, hung up the phone, put my head down on my desk and groaned- “Oh, GOD.” I think the girl at the desk next to me thought someone had died. She made the mistake of trying to put her arm around me. At which point I exploded.

I burst into tears of rage, jumped out of the chair, screamed (yes, screamed. in the communal office. at work.) “I EFFING HATE THEM!!” I then sheepishly apologized for my language, and stumbled out the office through the fury-tears.. Not my proudest moment. But that's how much they got to me.

I’m not sure I’ve ever been quite so angry in my life. I couldn’t breathe properly. I couldn’t speak for a while. I couldn’t function properly for the rest of the day. I kept on running over it again and again in my mind.  I was furious. Furious at the way the woman had spoken to me. Furious at their refusal to accommodate personalized medication regimes. Furious that they expected me to downgrade to antiquated technology and old drugs that are known to be inadequate, and even then, they wouldn't pay for all the insulin I needed. I was furious that I'd never been told any of this before. Furious at having been ripped off for so long, and furious that it took me so long to realize that I really was being royally screwed over.  

This is the day that I snapped. This is the day I declared war. I just refused to take it anymore.  As of this day, I decided, I would not give them another cent of my money.  I know that I could have appealed to BM, I could have done the paperwork, made the phone calls, and tried to fight it. But I had had enough of BM. I could have looked at upgrading to a better plan with BM, but after putting up with being given the run around for 2 and half years, if I never had to deal with BM again it would be too soon.

This is how I saw it: I refused to submit myself to their outdated and inadequate excuse of a diabetes treatment regimen. Not when, in these times, there’s such amazing newer treatment technology out there.  I know my D- control hasn’t been great the past couple of years, but it sure as heck isn’t going to get better on Protophane and testing 0.83 times a day. No, sticking to BM’s plan was not an option.

I did some math:
If I added up what I paid to BM each month, plus what I then forked out for my medication myself, it came to about R2000 a month.  So, technically, that’s up to R2000 that I can pay to another scheme, and get them to pay for my meds and test strips, and maybe, just maybe, even an insulin pump. (Take that, BM, with your vials and 0.83 tests a day!)

I did some research:
I found out that there are some insanely expensive medical aids out there. But, working online and offline, I managed to hear from a couple of people with diabetes who were using insulin pumps.  I asked about which scheme they were on, and how it worked. And one name consistently came up- DH medical scheme. And, as it turns out, their lowest plan through which they’ll pay for a pump is just over what I can afford. Darn it. But this really is the best option. This needs to be done. I want to do this.
So, while other people my age are saving up for cars, or houses, or overseas trips, I’m forking out over a quarter of my monthly salary to a medical aid. And I’m back to relying on my parents a little for help, and trying to reassess the rest of my monthly budget. But, from May 1 this year, I’m a member of DH.  And it feels gooood.

Well, so far, so good. Their response to all my queries has been lightning fast.  I’m technically in a three-month waiting period for making claims, because I’ve changed medical aids mid-year. But they’ve approved all my requests for them to pay for my D-meds and medical supplies in the meantime. They’re even paying for that D-doc appointment I went to on Monday.  Stuff is falling into place. I may even get to start on a pump sooner than I thought! I hate the paper work all this is taking (I hate admin in general), but on the other hand I do a happy dance in the office whenever I get another e-mail saying they’ve approved something.

The only loose end in this story is BM. Even though I’ve made multiple phone calls, and sent them multiple e-mails requesting my membership to be cancelled, they won’t let me go until the end of June. They consider it a two-month notice period. I consider it a further attempt to leach me of whatever money they can while they can. And seeing as it’s illegal to be a member of more than one medical aid scheme at a time, I’m fighting this tooth and nail. Something’s gotta give, and this time I refuse to let it be me.

And just because I’m not appealing against BM’s decisions doesn’t mean I’m not fighting them. I declared war, remember? See, here in South Africa we have a law, the Medical Schemes Act, which established the Council for Medical Schemes (CMS). This council is the key regulatory body for all our medical aid schemes, supervising what the schemes can and cannot get away with, and what they are legally required to do. One of the key functions of the CMS has been to lay out a list of Prescribed Minimum Benefits (PMBs); medical conditions or situations which medical aids are legally obligated to pay for, always. PMBs include medical emergencies, as well as a list of chronic conditions for which medication is essential for survival. Diabetes is a PMB. All medical schemes have to cover it. Depending on the level of the benefit plan, they can provide more or less cover, but even the lowest plan has to make provision for meeting a minimum standard of care, as outlined by the CMS.  One problem with this system is that some of the guidelines for minimum care are a little fuzzy, and some medical aids are taking liberties with their interpretations of the guidelines.

So the question is: was BM completely out of line in blatantly not meeting these minimum requirements? Or were they just applying a very loose interpretation of the guidelines? Or, is it perhaps that the guidelines provided by CMS are just completely inadequate? Either way, it needs to be fixed. I declared war against BM for this. In reality, I can’t really do much to them. Except that I can take them to the CMS. If BM isn’t meeting the guidelines, I’ll fight them. If the guidelines are inadequate, I’ll fight the CMS to change them. Either way, the next time an unwitting and undefended PWD finds themselves in BM’s clutches, BM should be forced to pay for them. They shouldn’t be allowed to do this again.

I’m still furious about BM. But I’m so relieved to be getting rid of them. And I’m grateful for the changes that have, and are, and will still, come about because of this. Deciding to proactively fight a medical aid has overflowed into me proactively fighting my diabetes, which is probably the more significant decision. And it’s triggered a domino effect of actions and decisions that look set to give me the better tools to do this.

This is good. This is exciting. For this, I am grateful.