Another angry blog post about insurance

...Because what else is new, right?

But seriously, what I want to vent about is insurance deciding what is or isn't medically necessary. Let's break this down: 

You go to your physician, who attended upwards of 8 years of schooling to become a MD. They evaluate you, hopefully take your input as a patient, form a medical opinion and a plan of care, write a prescription or two and send you on your way. You go to your pharmacy to pickup your medication, only to find that your insurance company has denied coverage of this prescription. They feel it is not medically necessary, or they have a "preferred alternative" that they do cover.

This is something we've unfortunately all grown used to. But let's just pause a moment. And let that sink in.

First of all, preferred by who? Not by me, the person who's going to be ingesting/injecting/applying the medication. Not by my doctor, who prescribed medication in the first place. But I mean, what value are our measly preferences in this situation, right?

Second of all, our insurance company is determining what our medical needs are. So what, then, is the point of seeing a physician in the first place? Why not just go directly to the insurance company and seek their medical opinion? Oh, that's right. Because they're not physicians.

To play devil's advocate, doctors are employed by insurance companies to conduct clinical reviews of prescriptions. However, are these doctors the most appropriate people to be doing this review? In short, no. When my Fiasp was up for review to determine what level of coverage it would receive, the review was conducted by a PhD. No shade to PhD's, but if someone's reviewing my insulin needs, I think it should be, maybe, I don't know, an endocrinologist? Perhaps my endocrinologist? One who isn't employed by a company that profits from denying coverage of the medication I'm seeking? I mean, we are literally asking people to make a determination that will either harm their own company, or harm us. And they've never met us. Which way are they more likely to go? Does conflict of interest not play a role here?

It's a very backwards system, to say the least. We go to doctors to get appropriate care. But then we're met with roadblocks to actually receive that care. For people with chronic illness, dealing with this for a lifetime is draining and aggravating. We should explore a system that makes it easier for people to live their best, most healthy lifestyle. An ounce of prevention is worth a pound of cure. If we keep people healthy, we avoid future hospitalizations and prolonged illnesses. And in turn, avoid future expenses our insurance will have to cover. So what is the end game for them? Are they just stuck in that phase of childhood development in which they have no ability to engage in delayed gratification?

End rant.

(For now).

Where is the love?

Healthcare has been a hot button issue lately here in the states. Of course for those of us who live with a chronic illness, it has always been an issue. But with the 2016 election, healthcare along with many other public policies have come to the forefront of the nationwide conversation. And frankly, the conversations have been quite alarming.

There is an overwhelming population of people who believe that healthcare has to be earned. That the right to live is not an inherent right for all humans (even though our US Constitution specifically states otherwise). People feel that if you work hard, pay your dues, and play by the rules, you will A: Stay healthy, and B: Be granted great insurance coverage, God forbid anything should happen to you. This logic is flawed. Chronic and/or acute health issues can happen to anyone, at anytime, for a variety of reasons. As a species, humans don't like to believe this. It creates what's called "cognitive dissonance," which is when we are presented with a reality that doesn't match up with what we've always believed. It therefore causes dissonance, or disruption, so we do everything in our power to ignore the reality and continue on with our faulty beliefs. We cannot reconcile reality with our wishes because it causes discomfort.

Most people grow up hoping or believing that they will have good health. This is normal - it's a positive outlook on life. However, as we grow older we tend to experience certain realities - maybe we're diagnosed with type 1 diabetes, someone we love is in an accident, our parent gets laid off and we almost lose our insurance - and we are able to shift our beliefs accordingly to read more like this: things may not always be easy. Things could happen to us and our family. But for some people, this adjustment doesn't happen. They continue to believe that bad things come to those who deserve it and that healthcare should be earned.

So is the issue that people are inherently bad and have complete disregard for others? I hope not. No, what I think is happening in the majority of cases is that people are simply rigid in their beliefs due to concerns about their own self-preservation. And this needs to change. We need to challenge our beliefs because they are flawed. Yes, it is a frightening reality to accept - that we could be struck with an illness or hit by a car at any time. But we are doing more harm than good by holding on to the flawed belief that we are in total and complete control of our health or our circumstances. It is not reality.

The reality is, every human has an inherent right to live. And for some humans, what they need to live - and live well - is a bit more extensive than what others need. So I challenge you all - what belief do you cling to that begrudges others their inherent rights? How can you start to chip away at that belief and re-frame it?

Using Anger as a Tool - The Global Insulin Crisis

Being a social worker means I'm rarely surprised by anything. We are often witness to every kind of  bizarre and disturbing occurrence out there. We work in the medical field and see people struggle with a complicated healthcare system while trying to care for themselves or their children. But every news story that blasts through the screen about another diabetic dying from insulin rationing hits me like a punch in the gut.

Insulin prices have been slowly climbing over the past decade. It's a reality that seems to have been kept under wraps - except, of course, from the patients and families who have been struggling in silence each year their copay goes up. As someone who's been privileged enough to not have this issue constantly weighing on me, I could easily turn a blind eye to it. Mutter "yeah, that's a shame," and go about my everyday life. I'll be frank - this path is tempting. This is a beast  of an issue that has numerous parties involved, and differs from nation to nation. In a recent New York Times article regarding insulin prices, Danielle Ofri wrote, "It's hard to know where to direct my rage." And it is. It's overwhelming. Where do we begin? The only answer I can formulate is this: we start with raising our voices. And this has already started: with numerous articles like Ofri's, protest trips to Mexico to exhibit pricing differences, TV news features, and type 1 advocates blasting pharmaceutical companies on social media. Now that the fire is catching, we have no choice but to roll with it.

To be clear, insulin prices are an issue everywhere - not just in the USA. While insulin in Mexico may be affordable for us, it is not the case for most residents of the country. Insulin prices looked at as a percentage of income paints a better picture of the bleak reality. Aside from countries like Canada and England who have universal healthcare, insulin prices are unmanageable for most populations. The cost of living with diabetes takes up the bulk of individuals' or families' income, leaving people scrambling for rent, food, and other necessities.

Info-graphic created by T1International

While coming up with the money is the initial struggle for most, an issue that is specific to the US is the ability to then get your hands on insulin. You need a prescription. You need that prescription submitted. Maybe it gets denied. Then it needs pre-authorization. Then it gets approved, but you have a bigger co-pay than expected. Then you have to download a co-pay card (if you qualify). And then you can pick up your insulin. This process can take days at best, weeks at worst. And contrary to what many people may think, not everyone has the time to be battling on the phone with insurance and refereeing between the doctor, insurance, pharmacy and pharmacy benefit managers (PBM). We do have lives outside of diabetes.

This issue isn't specific to insulin, either. The price of test strips are exorbitant. They are considered a luxury in many 3rd world countries. Even here, some insurance companies (mine included) only cover enough strips for 3 tests a day. To get coverage for more, a letter of medical necessity is needed. In what world does someone with type 1 only need to test 3 times  a day? It's clear that insurance regulations don't seem to be based on diabetes care best practices recommended by physicians.

As I said, it's a beast of an issue. And it angers me. A lot. Instead of sitting on that anger or turning a blind eye, I decided to get involved. Becoming an advocate for T1International is step one for me. T1International is a non-profit that takes no donations from pharma companies and advocates for people all over the world to have access to the medications and education they need.

Enough of suffering through this issue in silence. We're demanding change. We're not waiting. We want #insulin4all, and we want steps to be taken towards it starting now. If you want to get involved, check out T1International, search the hashtag #insulin4all on social media, and check out what other diabadasses have been doing below.

• Libby Russell at I Have the Sugars is selling statement tees to benefit T1International.
• Robin Cressman raises her voice and led a group of type 1s across the border to purchase insulin in Mexico to protest accessibility and pricing issues. 

My Libre Experience

By now I'm sure many of you have heard about or seen pictures of the Freestyle Libre system. For those of you who haven't, here's how it works:

The system has two parts: the sensor and the reader. The sensor is itty bitty and gets inserted into the back of your arm. It stays in for up to ten days. When you want to get data, you click on the reader and simply wave it over the sensor. It gives you your current BG, along with a graph of your previous readings for as long as you've been wearing it. The reader also tells you if you're trending rapidly up or down, slowly up or down, or running steady.

Unlike the Dex or Medtronic system, the sensor doesn't automatically give you your numbers - you have to wave it to get the data. This means there's no alert system if you're about to go low or if you're creeping up. The reader works through clothing, and it has a built in Freestyle meter as well.

Journey to Libre

I started my journey, of course, with insurance issues. When I first attempted to pick up the system at the pharmacy, they told me that insurance covered none of it. This was when it first came out in the US, in the beginning of 2018. It was also VERY difficult to locate a participating pharmacy that had it in stock. After a frustrating failed attempt, I spent a couple of months on the Enlite system, as it was covered by my new insurance. I did get some good data with this, but I went through too many inaccurate readings and failed insertions. My mind drifted back to the Libre. I decided to go through the company, and let them battle it out. They reached out to my endo to get a prescription, and went back and forth between her office, the pharmacy, and insurance. The system ended up being partially covered, and the out of pocket is less than the Enlite system for me.

Bringing the Libre home was super exciting - at this point I'd heard more and more about how convenient and accurate it was, and was itching to try it out. I was especially excited to use it while running. I've been on it now for about a month, and am thrilled so far. The readings are accurate, I'm pricking my finger less, and I feel like a spy from the future every time I wave the reader and get hours of data. Not to mention I have the system decked out in gear from Pimp My Diabetes and T1D Chick. There are certain aspects of the system that I can see some people being hesitant towards, depending on their situation. Below I've detailed my pros and cons.

PROS

Accuracy: My libre is almost always spot on. I trust it, which is a big deal for me. Small discrepancies tend to happen when I'm rising or dropping quickly, like with most CGMs. 

Size: You cannot beat it in the size department. The sensor itself is roughly the size of a quarter and flat. The reader is tiny as well, even in a case. Because it's so flat to your body, it's harder to rip out on accident. 

Duration: Sensor change is every 10 days. Enough said. 

Dual meter: The reader can also be used as a meter with Freestyle Precision Neo strips. These strips are super convenient too- they're wrapped individually in foil so you can fold them up flat. I use them for when I'm running, at work, or need to carry less bulk. Then I don't have to carry my usual meter as well. 

Cost: Even with the lower rate of insurance coverage, the out of pocket still ends up lower than the Enlite for me. The original market price of the system is lower than other sensors. 

Minimizes alert anxiety: If you feel your lows and highs and aren't reliant on the alerts on the Dex/Medtronic, this can be a good option for you. I tend to have alert anxiety, in which I get alerted that I'm dropping or rising and tend to over-correct.  The Libre eliminates this for me.

CONS

No alerts: If you don't feel your lows and highs, this system may not be ideal for you. While it's easy to scan and check your BG, you don't have the peace of mind that may come with the alert system.

Not technically "continuous": Because you have to scan the reader over the sensor, the system isn't technically considered a CGM. It isn't automatic - you have to put the little bit of effort into it.

Insurance: Because the system is so new, it's less likely to be covered by insurance. Or if it is, it may not be completely covered. I anticipate that as time goes by and more people use it, more insurance companies will offer more coverage.

Bottom Line

Bottom line is, if your insurance will cover it, I highly recommend trying it out. It's small, accurate and fun to use. My coworkers in the medical field are in awe of it. Plus, it's always fun to hear people guess what the heck is on your arm. So far I've gotten:

• A penny (this guess was from a 3-year-old)
• A radiation sensor
• Miscellaneous crap stuck to my arm ("Hey, you've got something stuck there")

We'll see what guess comes next...

SOS!! Prescription Assistance Resources

Prescription medications. They play a huge role in the life of those with type 1. And they go beyond just medications - they include glucometers, test strips, lancets, pen caps, syringes, and so on. Many people with type 1 also live with autoimmune comorbidities, such as hyper/hypothyroidism or lupus, which means - you guessed it - more prescriptions. What many people don't realize is how costly these medically necessary medications and medical equipment can be, even after insurance coverage. For example, even with insurance coverage my co-payment for my insulin was roughly $230 for a 3-month supply. I am lucky. There are many people do not have insurance to soften the blow.

When you have type 1, getting your medical supplies can feel like a beast that you are expected to conquer all on your own, with no guidance. This may be why so many people fall between the cracks and struggle to care for their diabetes. Between living as a type 1 for almost 25 years and working in the field of medical social work, I have been privileged to glean handy information and resources that can help tackle this monster. Here is the quick and dirty handbook.

Terms to Know

Copayment. What you have to pay for your medication. 

Once your insurance pays their share (say, 80% of the cost of the medication), you are responsible for the balance (20%). Each insurance company is different in terms of how much they pay. Typically, insurance companies offer the most coverage for the cheapest medication, or the generic. As an example, your insurance may cover 80% of the cost of a generic (or formulary) medication, but 70% for a name brand (or non-formulary).

Formulary. The type of medication your insurance will provide the most coverage for. 

On the flip side, they will cover less (and you will pay more) for non-formulary or name brand. Then there are excluded medications/medical supplies - medications that your insurance company will not cover at all. However, if your medication is on the exclusion list, you may still be able to get coverage. 

Example: The insulin I use is on my insurance plan's exclusion list - meaning they do not cover it at all and I would be responsible to pay the entire price out of pocket. However, my insurance (and many others) allows my doctor to submit an appeal or letter of medical necessity for said medication. Once approved, the company agrees to cover the insulin as a non-formulary.
Get in touch with your insurance and ask what department can assist with this. It will likely be the prior authorization department.  If your doctor's letter/appeal is approved, your insurance may agree to cover this excluded medication to some extent- they won't cover as much as they would for a generic, but  they won't cover nothing.

Co-pay cards: Prescription assistance for commercial insurance - not for those who are on Medicare/Medicaid or uninsured. Co-pay cards can typically either be downloaded from the manufacturer website or given to you by your provider.
Prescription Assistance Programs: Programs that provide financial assistance/reimbursement for your out of pocket medication expenses. Typically those with Medicare or those who are uninsured are eligible. Applications can be made by mail or online, depending on the program.

Resources to Have

NeedyMeds. Probably my favorite resource when it comes to prescription assistance, NeedyMeds is a one-stop shop for assistance programs, downloadable coupons, and co-pay cards. Simply type in your prescription (you may need to know the generic name), and it will prompt you to choose co-pay card programs, assistance programs, or coupons, as they are available for that prescription. Link below:

http://www.needymeds.org/

Good RX. Another useful tool, Good RX provides a price comparison between your local pharmacies and downloadable coupons for your scripts. They have an app, or it can be used from your phone's browser or email. If you're old school, you can simply download the coupons and print them to take to the pharmacy. Link below:

https://www.goodrx.com/?kw=price&utm_source=bing&utm_medium=cpc&utm_term=goodrx|e&utm_campaign=Brand&utm_content=Ad-Group_GoodRx&msclkid=e01c282f134714ff51b9725fef046963

Whether you are uninsured, under-insured, or insured by a crappy plan, there are resources out there that can likely help. I encourage everyone to try out these resources. No one should have to pay exorbitant amounts of money to stay alive. Your doctor may be aware of other programs as well, so don't be afraid to ask them. You will likely need their help or their signature for some of the assistance applications. And this doesn't just go for type 1 - this goes for any and all prescriptions for any and all medical conditions.

Note: This post was written based on my experience, and is in no way an attempt at a thorough explanation of the ins and outs of insurance coverage. Each plan is different, and each person will have different experiences. Feel free to comment with different experiences or questions below.

It's Not You, It's My Insurance

Breaking up with your doctor

Is there anything more uncomfortable than a breakup? Especially one where there’s no bad blood (yet)? Perhaps not. Recently I had a change in insurance coverage. My new policy allows for lower copays and prescription discounts with a hospital group endocrinologist. Naturally, I jumped at this – I have only been seeing my adult endo for a couple of years, and while she is very kind and helpful, the pros outweighed the cons in regards to switching – especially cost wise.

As exciting as this switch is – as fellow T1Ds, you know how big a deal any decrease in out-of-pocket expense is – it has caused me a significant amount of worry. What an icky feeling, having to tell my doctor I am switching. I weighed the options on the drive to the office. What exactly would I say? Who would I tell first – the office staff, or the MD? Will they be offended? Will they fax my chart, or will I have to sign a whole heap of paperwork to release the records? As I sat with this discomfort, I felt an eerie sense of déjà vu. Thankfully, my APN and MD were incredibly gracious and understanding. I left the office with a bittersweet feeling. Reflecting on my visit, I felt familiarity wash over me – like I had just broken up with my endo.

So what to do if you’re in this jam?

Make your decision before you enter the office. Switching doctors is a big decision for someone with type 1. Typically the recommendation is to see your endocrinologist every 3 months. This is way more often than your annual PCP visit. If you’re super comfortable with your endo and are feeling secure financially, it may be worth the extra out of pocket to stay.

Stick to your decision. Once you make your decision, stick with it. Don’t waffle in the office. Professionally, the staff should understand that this is your decision even if they are sad to see you go. It’s okay to express these feelings on both ends, as long as no one gets carried away. Be kind, but firm. If you need a scapegoat, tell them you simply can’t afford to continue there. Blame your insurance. No one likes insurance anyway, doctors included.

Have your records faxed. Not all offices will do this, and some require a signed release of information. Be prepared to ask about it while you’re there, and have the fax number of your new doc handy. If they can’t fax it, they should be able to give you a hard copy to take with you to your new significant other.

Relationships – doctor relationships, romantic relationships, friendships – can be hard. Endings are usually inevitable. When it comes down to it, you gotta do you. As the wise men once sang, “every new beginning comes from some other beginning’s end.”