It Shouldn’t Be This Hard, Part 2

A supervisor/manager called within an hour of my last blog post going live (what a coincidence….considering I linked to it on Facebook and Twitter and called them out publicly on Twitter…). He apologized and said they’d ship my order first thing in the morning, overnight shipping at their expense. This is great, but I was a bit horrified that he named off an address I haven’t lived at since June. I still have NO IDEA how they got that address – I NEVER gave Solara that address! Yet last Thursday the person I spoke with named off that address – I corrected her, letting her know we moved across the street…and that is my billing address. I gave a completely different shipping address for my parents’ house because they are retired and can receive expensive/valuable packages on my behalf while my husband and I are at work. However, the gentleman I spoke with tonight had no record of these addresses. I sincerely hope this isn’t the beginning of what I went through with Edgepark…where they’d ship things to long expired addresses that I had requested over and over and over and over they delete from their system…..

Anyway, my package did not ship yesterday morning. It did ship by late afternoon local time (mid-evening in my time-zone). It made it here overnight and was delivered to my parents’ house this morning. I’m not a fan of the fact that no signature was required, so UPS just left it outside on my parents’ porch. (When will medical supply companies learn to at least ASK if we’d like to have to sign for our EXPENSIVE packages???)

I had a brief moment of panic when I opened the box and saw only one transmitter. Dexcom has been pretty clear they are shipping all new G5 systems with TWO transmitters, because they time out after 3 months (with a short grace period of some additional days built in). I called back the manager at Solara and got his voicemail. I inquired whether I was supposed to receive only one, or I should have gotten two – and will I experience weird billing/authorization issues when I request another one in 90 days….since MOST people are receiving two right off the bat and will not need to reorder for 180 days…

After my brief panic I took a closer look at the individual boxes. That’s when I noticed something interesting….. their pharmacy people are complete morons, and now it’s confirmed! Yes, I have 3 refills on my transmitters…so that question is answered. However, instead of 11 refills on my sensors, I have 99. Yep, this year I could potentially (if I could afford it, which I most certainly CANNOT) obtain 100 boxes, in total, of sensors. Pretty sure that’s wrong…. And the thing that makes me mad? The prescriptions were registered in their pharmacy on October 14, 2015. That was 15 days ago. 15 days ago I was being told ‘We haven’t heard from your doctor’ and getting the run-around and being ignored. So….I was lied to by Solara, so that my prescription order could sit for almost 2 weeks without being processed.

ARE. YOU. F’ING. KIDDING. ME?!

I’m so over this, and I’ve only used them for one order. No one has bothered to mention to me if they have an autoship program, and if so am I on it. Since it was never mentioned and I certainly didn’t give permission to bill me for future orders, I’m going to use the next 30 days to try to find ANYONE else who may take my pharmacy benefits for Dexcom supplies and get my RXs transferred. This experience has put a very sour taste in my mouth. Diabetes is hard enough, without adding bad customer service, lies, and unnecessary waiting to the mix.

I’m going to call Byram tomorrow and see if they take my pharmacy benefits….they were AWESOME when I got my Dexcom G4 and subsequent supplies through my medical benefits with them. Not a single problem for almost a year and a half. I could easily reorder online and know my supplies would be delivered within 5 business days, to the correct address. The one time they needed to call my endo for a refill RX on the sensors they let me know why there was a delay. Love them…want to go back to them.

Knowing my luck, I’ll be stuck with Solara however. Cause that’s how things go for me….

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It Shouldn’t Be This Hard

I’ve been trying to get a Dexcom G5. I never upgraded to the G4 with Share, and my G4 system went out of warranty in early May. I’ve been using my current system while ‘walking on eggshells’, but I wanted to wait for the G5 release. When Dexcom made their announcement I decided it was time to get a new system.

It’s been a horrible two months…and I still don’t have a G5. This story is so long and convoluted it would be funny except it’s too sad and infuriating to be funny.

My insurance policy states that they require preauthorization be obtained before a CGM can be purchased. So I called my insurance company’s ‘medical management’ and left a message. A day later no one had returned my call so I called again. I was told ‘you don’t obtain authorization…the DME provider does’.

My insurance is technically an EPO so I went with my ONE in network provider, our ‘in house’ (insert name of my employer here) DME provider. I called and requested information on how to start the process to order a Dexcom, via voicemail. The next day I got a call back from someone saying ‘We don’t handle that. Go through your local (insert name of my employer here) pharmacy.’

So I called the pharmacy and left a message. A day later I got a call back saying they have no idea what a Dexcom is and cannot obtain it for me.  So I called back the in-house DME provider and left another voicemail. A day later, I get a call back from someone referring me to someone else within their department. I call her and leave a voicemail. A day later I get a call back from her and am alerted that I will need to submit 90 days of BG logs to her. NOT a Dexcom report – they want my actual fingerstick results.

I use three meters (one kept at home, one kept in my purse, one kept in my desk at my full-time job) so I had to pull three meters and try to download to Diasend. Only one would download. So…I had to go through them each and log everything by hand. This took several days because it took HOURS of time. I emailed this out and then heard nothing for about a week. Called back and was told ‘We are obtaining preauthorization…but it can take up to two weeks’.

So a week later I called again and was told I’d received authorization and they’d act as go-between for me and Dexcom. Then Dexcom, being overwhelmed by orders, never got back to my ‘in house’ DME provider. Eventually I called again and requested pricing info in the interim and was told ‘we don’t actually have a contract in place with Dexcom…’ and the price quoted was SO FREAKING ASTRONOMICAL it was frightening. Like…5x the cash-pay price direct from Dexcom. So…I called Dexcom to confirm/deny this, because I couldn’t believe it. They could neither confirm nor deny in a timely manner, so I asked them a few days later about my pharmacy benefits. Three days passed with no word so I called again and was told ‘we don’t take your pharmacy benefits…but Solara Medical does.’

Then I called my ‘in-house’ DME provider, cancelled my order, and called Solara Medical. I left a message. No response. The next day I left a message. No response. The following week I left two messages. No responses. Finally I managed to reach a LIVING PERSON and she took my pharmacy benefit information. Four days passed with no answer, so I called back and left a voicemail. Someone called me the next day and told me my pharmacy benefits were acknowledged, my price would be $300 for the system, $100 per month thereafter for sensors, would I like to order? So I said yes, and they requested my doctor’s information. It took them three days to even fax paperwork to my doctor, and then another day to call me back after it was returned to them.

This was last Thursday and on that call I gave my credit card info to pay my $300 (which was immediately charged…they can do THAT quickly!) and I was told that I’d get a shipping confirmation and would have my G5 system in 5-7 business days. It’s now been 3 business days….I have received no shipping confirmation. I’ve left two more voicemails and I’ve emailed my ‘intake coordinator’ at Solara. No responses.

Really…it shouldn’t be this hard.

IT SHOULDN’T BE THIS HARD.

IT SHOULDN’T BE THIS HARD!

This is a product I REQUIRE. I don’t want it because I have some sick desire to continually stab myself with needles. I don’t want it because I enjoy wearing medical devices stuck to my skin…medical devices which cause me rashes and discomfort.

I need this because I CANNOT FEEL LOW BLOOD SUGARS. That, as you are well aware, is dangerous. This technology can essentially eliminate the danger.

Yet these companies act like patients…patients like me, patients in general…don’t matter. They take their sweet time doing seemingly nothing, dragging their feet, etc. They show extremely poor customer service, compassion, concern, etc, as if they are the only option in the world.

Let me tell you a little secret (which really isn’t a secret, if you’ve read my blog before): I’ve never been confined to an ‘only option’. I have been known to go ‘out of network’ to get supplies that I need, because my in network option(s) sucked so bad and provided such horrible service. I will happily quit my relationship with Solara before it ever really begins, if that is what I feel is best for me and my health. Period.

Here’s to hoping someone gets back to me tomorrow….

FDA News and Being Thankful

First and foremost: FDA approvals are coming out fast and furious lately.

Last month the Dexcom G5 approval was announced and it is expected to begin shipping to customers this month.

Today it was announced that the t:slim G4 pump has also gained FDA approval.

Here are my thoughts: I am very excited about the Dexcom G5. I like the looks of the new receiver (in case you have not seen images, the graph will now be on a white background and color distinctions for in range, below range, and over range will be easier to see). I use an Android phone and there is currently no Android app, but I’m ok with waiting a few months for that to be available.

I am excited about the t:slim G4….for those who don’t want the G5 system. I suppose I’d be more excited by it if the Dexcom G5 had not just gained approval. I do look forward to the next step – the t:slim G5 pump. I am hopeful that it will gain approval by the time my current warranty is up and I can get one next year about this time.

And therein lies the crux of this post….I wish more people would be thankful for what they have, instead of complaining. Tandem has announced only allowing anyone who purchased a pump since 8/1/15 to trade it in for a free upgrade to the G4 pump. Everyone else will need to purchase the G4 pump outright. Many customers are angry because they feel misled – they were told there would be an upgrade option for them. I understand the frustration – I really do. And Tandem has not done a good job of backing up what their employees have said or making any apologies. HOWEVER……. many people who were never given any information about upgrades either way somehow feel they are entitled to a free or greatly reduced price upgrade option. (This is not feasible for such a new company, if they want to remain financially stable…..pumps cost a few thousand to MAKE – even if they charged $200 to upgrade, that’s a HUGE loss for every pump they allow to be ‘upgraded’ and the financial gains from pumps sold at normal pricing won’t outpace those losses in such a way that a newish company like Tandem can come out unscathed….)

I would like to see more people just being grateful they HAVE a pump, of any kind, or a CGM of any kind. New technology is exciting, of course. Many new technologies offer new conveniences and features that make our lives with diabetes easier to manage. But…even without the ‘newest’ technology, shouldn’t those of us who have pumps and CGMs just be thankful we have those devices, and leave it at that? There are people around the world who can’t even get their hands on insulin. There are people who have to walk 50 miles one way every month to pick up their insulin and syringes. There are people who don’t have access to glucometers or test strips because they live in areas too poor to provide access to comprehensive health care or medical supplies of any kind. And we sit here and complain because we can’t get a slightly updated piece of technology for a discount? Let me tell you what that is: a first-world problem.

Perspective…that’s what we all need.

I for one am thankful I have my pump. I am thankful I have my Dexcom. I will likely be upgrading my Dexcom to the G5 but that’s not simply because I ‘want one’….my current Dexcom G4 system went out of warranty 4 months ago. It’s a ticking time bomb, and at any time the receiver could stop working. The transmitter should be ok a few more months, but if something DOES happen…it won’t be covered, because I purchased the transmitter months before I began using it, and it’s also out of warranty. If for some weird reason my insurance company said ‘you can have a new system, but you need to stick with the G4’…I’d just be thankful I get a new system at all, because so many in the world don’t have access to this technology (in fact, so many in just this country don’t have access to this technology…).

Perspective. Being thankful. …….Think about it.

A Whole New World

I feel like I’m navigating the diabetes waters all over again, from scratch, lately.

I got a new full-time job, with new insurance, and new insurance requirements.

First and foremost: insulin. I have used Novolog for many years now. My new insurance prefers I use Humalog. I could still get Novolog…but I can’t really afford the price difference, so I had to switch. I haven’t started using the Humalog yet, as I have a little ‘stockpile’ of Novolog and my CDE recommends I use all of that up first so that if my ratios, etc. change with Humalog I won’t have to change everything back when I do eventually use up the last of my Novolog.  We’ll see how the switch to Humalog goes, whenever it happens. I think I still have about 4 months of Novolog in my fridge…

Secondly: my endocrinologist. I love him. And he’s moving to Cincinnati. So…I am going to have to start seeing someone new. The good news is that he’s hand-picked someone for me that he says is very comfortable with insulin pumps and CGMs, works with my CDE, and has expertise in working with pregnant women with diabetes (this way, if kids are in my future, I will already be seeing an endo with a lot of experience in handling diabetes and pregnancy).

Third: DME. My insurance wants me to use their ‘in house’ DME service, but their service hours suck, to the point where I’m just going to go ‘out of network’ and continue to use Tandem and Byram for supplies….but pay 2x as much. Convenience is a huge huge huge huge thing for me, and having no one available outside of my working hours to take an order, my insurance info, my prescriptions, my payment information, my shipping and billing information, my doctor’s information, etc. is almost impossible for me to handle. I live in the 21st century. I expect companies to have either evening service hours and/or an online reorder system. When they have neither, I kind of don’t want to do business with them. I mean…really?

Fourth: my pharmacy. I absolutely hate Walgreens and about 2 years ago I moved my prescriptions to Target…and I fell in love with their pharmacies. They have a smaller staff who have gotten to know me by name, know I use an insulin pump, are fast and efficient, etc. They always have my insulin in stock (Walgreens ALWAYS made me wait 24-48 hours because they did not have enough insulin on hand to fill my prescription). I could refill prescriptions via text message and I often received response texts within 10 minutes stating that my prescriptions were filled and ready for pick-up. My current insurance, again, wants me to use their ‘in house’ pharmacies. I don’t want to, but I’ve had to make the switch as pricing for an ‘out of network pharmacy’ like that at Target would double my copays on all prescriptions. I was not overly impressed with my first visit to my new pharmacy, but we’ll see how it goes.

I guess I am just frustrated: I had been in a place where I had a doctor I loved, an insulin that worked very well for me, DME providers I trusted and had no problems with (EVER) who were in-network and cost-effective, and a pharmacy/pharmacists who made things as simple and fast as possible for me. And now…all changed or gone.

Diabetes is hard enough – we as patients do not need tyrannical insurance companies/monopolistic health care systems to tell us what to do….

Low Blood Sugars and Emotional Control

I did something I am not proud of last night. I threatened to hit my husband during a somewhat petty argument.

Why?

My blood sugar was low. Very very low. At the time my Dexcom said 47 with a down arrow and wasn’t keeping pace well. By that point I was probably actually in the 30’s.

As people with diabetes who have experienced severe lows we understand – we are often not ourselves during a low. There isn’t NEARLY enough glucose for proper brain functioning and parts of our brain literally are not working correctly – sometimes the parts that control motor movements (which is why sometimes people with lows can’t stand up or walk properly), sometimes the parts that control inhibitions (which is why sometimes people with lows are mistakenly thought to be drunk, especially by law enforcement), sometimes the parts that control both receptive and expressive language (which is why sometimes people with lows slur their speech or speak sentences that make NO sense and have difficulty in understanding what you are saying), sometimes the parts that control memory formation (which is why sometimes, especially surrounding a severe low, ‘memory loss’ occurs – because memories were literally never formed!), and sometimes the parts that control emotion (which is why sometimes people with lows react with overdramatic anger/rage, sadness and crying, euphoria, paranoia, etc). Sometimes more than one of those.

Last night's blood sugar rollercoaster

Last night’s blood sugar rollercoaster

Last night I was definitely having difficulty with inhibitions and emotions at the outset of my first low. By the end of my series of lows I was losing motor control. This was a terrifyingly long-lasting series of lows. I ate about 7 glucose tablets and began coming up after my initial low (and overreactionary threat). I ate dinner, with no bolus….but then went low again. I began a two hour 0% temp basal and drank an entire can of Pepsi and came up…then went low again. I ate TWO protein bars with peanut butter and finally went up…hoping the protein would help (and it did…until I went low at 2:45am again). My Dexcom read ‘LOW’ (meaning below 40 – it won’t give a number at that level) far too many times.

And while in my head I KNOW that this extremely bad incidence of hypoglycemia was to blame for my comment to my husband, I also can’t stop feeling guilty. A part of me feels like I should have been ‘smarter’ than my failing, stuttering brain. That I should have been able to control myself at all times, despite being so low that many OTHER people would have reacted with unconsciousness and seizure.

The worst part is that our spouses, families, etc. don’t ‘get it’ – because really, how can you POSSIBLY ‘get it’ when you’ve never felt/experienced hypoglycemia like this? How can anyone who hasn’t felt the loss of and inability to regain control truly know what it’s like? They may say they ‘get it’ and be forgiving – or they may say it’s an ‘excuse’ and not accept it as an explanation for our behavior…….but either way we are isolated from them in that we know how it feels and they never truly do.

I’ve only reacted with overwhelming anger one other time when I was low – I was at work and suddenly found myself on the floor (apparently I didn’t pass out, but in the middle of walking I just plopped myself down in a sitting position on the floor in the middle of the store) and when pressed to drink juice by a boss I reacted by striking out and hitting him in the face. My thought process at the time was ‘How dare you tell me what to do?!’ but instead of reacting like a normal person to this thought I reacted with overdramatic anger and violence. Because my brain was not functioning correctly. Now we can all laugh about it but after last night, I no longer find it quite so funny. I don’t WANT to hurt anyone and I don’t want to anger anyone with my own inappropriate and misplaced anger.

Please share with me YOUR stories of extremely low blood sugars. Have you ever hit an EMT, family member, or friend trying to help you? Have you ever thrown things and had a tantrum like a child – because at the time it’s the only reaction that makes any sense to your glucose-starved brain? Have you ever done something ridiculous when low that now you can look at and think ‘What the HECK was I thinking?!’. Have you ever had a low that you had to hear about from others – not because you passed out, but because you lost the ability to properly form memories? I want to hear about them. I NEED to hear ‘me too!’ and know I’m not alone right now, because my feelings of guilt are overwhelming right now.

Asante Solutions: Out of Business

If you use an Asante Snap insulin pump you have likely been notified by Asante Solutions, but for the general public who may be interested, this comes directly from the Asante Snap’s website on their ‘Blog’ link under the ‘About Us’ title:

We regret to inform you that as of Friday, May 15, 2015, Asante Solutions, maker of the Snap Insulin Pump, will be closing our doors and the company will no longer be in business. If you are a Snap user, please contact your healthcare provider with any clinical questions you have. For questions about your pump supplies, please contact the distributor that has been shipping your supplies.

If you are interested in transitioning to a new pump, we suggest you call Animas to learn more about the new Animas Vibe, which is integrated with Dexcom CGM. Animas is graciously offering a limited time offer to all existing Snap users to transition to the Animas Vibe pump. If you are interested in learning more, simply call 1-877-937-7867 x1562.

We sincerely regret this situation.

Asante Solutions

JDRF Type One Nation Summit 2015

Today I attended the JDRF Type One Nation Summit in Pewaukee, WI. This was the first JDRF event I’ve attended besides the annual fundraising walks. In fact, I haven’t attended many diabetes-related functions of any kind….in addition to the JDRF walks, the only other things I have done is one ADA walk and in 2010 I attended the ADA Expo in Chicago.

It was exciting to attend and be able to see, hear, and talk with other people with diabetes, their caregivers, and medical professionals who work with type 1 diabetes. I was excited to see if I’d experience some ‘me too!’ moments – those moments when you connect, personally, with something another person is saying about diabetes, experiencing, etc – and I definitely had a few.

The morning started with a vendor fair, and I was excited to be able to speak with representatives for Tandem, Asante, and Animas (and to pick up some goodies, like World Diabetes Day shoelaces and a cute glucose tab tin shaped like a t:slim pump). I’m excited to see the updates to the Animas Vibe from the Animas Ping (besides the Dexcom integration) which include a ‘back’ arrow in the function screens, more controlled ability to enter a bolus without having to scroll, etc. They’ve definitely taken the Ping, which is a great pump, and expanded on that! I got to see and handle an Asante Snap pump, which has some nifty little features I wasn’t aware of – like a built in flashlight! The rep told me that they expect to have preloaded Novolog cartridges available by fall, so this fall I may request a 4 week free trial of the Asante Snap! I love the idea of almost instant cartridge/tubing changes – that’s a huge selling point for many people, I think.

The representative of Tandem was the person I was most interested in speaking to, as I currently use a t:slim pump. She told me that they expect the pump integrated with the Dexcom G4 to be available for sale in 2016. (Note: there is controversy surrounding this lately, as on their recent Q1 report call it was revealed that Tandem does NOT plan to offer an upgrade option to existing customers to upgrade to the newest pump – the integration with Dexcom goes beyond a software upgrade and thus if you want it you will have to purchase a whole new pump at cost. I have seen a rumor of a petition being developed for t:slim users who don’t agree with this business tactic – more on that later if it happens!) She stated that there are some pretty big software upgrades currently available for the t:slim – all new customers will get a t:slim that automatically has this new software included on it. Existing customers, however, are out of luck until the FDA approves Tandem to push these software upgrades to us via USB cable/the internet. She indicated that it likely won’t be until 2016 that we see this option available to us, which I was disappointed to hear….

The upgrade sounds pretty awesome! It includes the following updates/new features:

  • even brighter screen colors/better contrast
  • reverse correction boluses (you will be asked if you want to reduce a bolus if you are lower than your target, but above 70)
  • ability to fill a cartridge prior to installing it on the pump (currently some people already do this – but it only works sometimes, only if you are using less than 300 units, and the risk of getting a cartridge error is high)
  • ability to enter a manual bolus without first entering a carb value
  • better ‘fill estimates’ on how much insulin is in the cartridge after initial fill, with more precise measures after the first 10 units have been pumped
  • the pump history will now display TDD (total daily dose) for EACH day (not just today, 7 day avg, etc) broken into units and percent basal vs bolus
  • better alerts for multiple/consecutive occlusions prompting users to change their infusion site after 2 alerts
  • updated auditory notification/alert sounds
  • after-bolus BG reminder can now be set down to the minute
  • the ability to see your status screen WITHOUT having to tap 1,2,3 to first wake up the pump
  • the time to prime tubing is reduced by 20%

I honestly don’t know what I will do when my current t:slim comes out of warranty in early September of 2016. If the G4 integrated t:slim is out, I’ll likely just go with that – but if for some reason it’s not, I will seriously be considering the Vibe or the Snap (note: I hate Medtronic (thus why I haven’t mentioned them) and won’t consider them, but I know others love them, and that’s fine).

ANYWAY….after the vendor fair I had my first sort of surreal moment during the keynote presentation. One woman at our table checked her blood sugar and took out glucose tablets. The woman sitting next to my husband changed the battery in her pump. I then had a high blood sugar and had to give a correction bolus. It was so empowering to not have a single person bat an eye, stare, etc. It was just ‘normal’ and I relished that feeling.

During lunch I had an exciting (and also surreal) moment when the Certified Diabetes Nurse Educator I saw every 3 months from the time of diagnosis at age 6 until I left pediatric care (after I graduated high school) came and sat at our table. We remembered each other almost instantly. I’m quite frankly amazed that she’d remember me – she’s been working with children with diabetes for decades and must have seen thousands of patients in her life, and yet right away she remembered me (and my dad, who was always the one at my appointments with me). It was touching to know that she is so invested in what she does that she remembers a patient she hasn’t seen in over a decade.

There was a lot of small talk at the tables between speakers/panels and much of it was ‘how long have you had T1?’ or ‘which CGM do you use?’ which was also nice – because it’s not something I can just go up to anyone and freely discuss. It’s very liberating to be in a room full of people who also ‘get it’.

I’m regretting not attending an event like this earlier, though to be fair there are very few that occur in Wisconsin!