It Doesn't Matter If You're Red Or Blue, Pre-Existing Conditions Don't Care

It doesn’t matter if you sit on the red side of the fence or the blue - pre-existing conditions don’t care. 

It doesn’t made if you’re a Democrat, Independent, or Republican - pre-existing conditions don’t care. 

Do you have a broad interpretation of The Constitution or a narrow one?  
Doesn't matter, pre-existing conditions don’t care. 
But here's the thing, insurance companies do - and thanks to the Senate voting to repeal ACA, soon insurance companies will be able to deny you and your pre-existing condition(s). 

If you have a diabetes... or a heart condition, a leaky gut, thyroid issues, blood disorders, cancer - If you have ANY health condition, you may soon be penalized and punished for it, because at 1:30 this morning, 51 Senators agreed to repeal ADA and the pre-existing condition clause was put back on the table.

And if you don’t have a pre-existing condition? 

A. Good luck with that - genetics and age have away of sneaking up on you when you least expect it. 

B. If you fall into any of the following categories - your lives will be changed for the worse: 

1. Pre-existing conditions
2. You have young children on CHIP
3. You have young adult offspring currently on your health insurance plan
4. Take birth control meds (WOMEN)
5. If you get your insurance through your employer, the same rules (and more,) all the new will apply to you, too.

 Insurance companies will, if ACA is successfully repealed, be able to deny you or your loved ones insurance coverage for all of the above. 

Best case scenario, they will do what they did before ACA, make you wait a year before they agreed to pay for anything having to do with your pre-existing condition. 

Every drop of insulin, every cholesterol pill, every viagra pill, or chemotherapy treatment will come out of your pocket. 

Worse case scenario. They can legally refuse to cover you because you have a pre-existing condition. 

We have individual voices, and collectively they can are powerful – we must use them to protect ourselves and others living with pre-existing conditions!

Click HERE and "ACT" now to protect every single person living with diabetes and other pre-existing condition in the United States: 

DiabetesPAC makes it incredibly easy for you to email your Reps directly from the above link

DPAC provide a letter template with space for you to tell your own story – and as long as you know your ZIP Code, your email goes directly into your Reps inbox with the click of a button.

Also, pick up the phone and call (and tweet) your reps in the Senate and Congress, NOW and tell them how you feel about bringing back the pre-existing conditions clause, the repeal of ACA and all that we stand to lose.

 We have a hell of a fight ahead of us and #WeAreInThisTogether!

2 Months of Insulin = 4 Bottles & $955.13

Hard for me to share this pic, but in order to for me to encourage others to share their experiences so real change can occur re: affordable insulin for all, I have to do the same. 

Backstory: I'm good - I'm sharing because things have to change when it comes to insulin prices – for people with and without insurance.

Back near the end of October, I realized I'd finally met my yearly deductible and my insulin would now be free. 

My Dr. sent over my RX, and 2 bottles that would have cost $517.75 out of pocket, cost me $0.00. 

BUT 10 days later I realized that the RX was for the wrong amount. 30 units a day, instead of 60. BIG DIFFERENCE. 

My Dr's office called in the proper RX and it was filled on the November 18th. 

4 bottles (plus the two from October,)  until the end of the year.

 I thought I'd have one more "free" refill in December that would be covered 100%.  

 Unfortunately, my insurance says that my next refill is on January 2nd, 2017 - and it’s out of pocket.

 I'm thoroughly confused and I've spoken to my Pharmacist twice about it. But according to my insurance company's D math - that's the date. WTF. 

I'm lucky - I have samples of unopened insulin sitting in my butter compartment, and courtesy of my Dr.

Those samples save me lots of out-of-pocket - having them makes a huge difference in the cash I can actually keep in my pocket – I am blessed that my doctor provides me with them and I know it.

FTR, I will be calling my pharmacy at the end of December to see if they can push another insulin RX through before the end of the year. - fingers crossed, but at least I have lots of back up.

#######

4 bottles of insulin - a two month supply in total, of a drug that literally keeps me alive and that would have cost me $955.13 in total, or $238 per bottle, WITH INSURANCE - had I not met my 2016 deductible thanks to wrist and hand surgery. 

I paid $0.00 because as I've mentioned several times, I've met my yearly deductible.

$238.78 a bottle for fast acting insulin (FTR, the name of the insulin is blacked out because my insurance charges me the same amount of money for Apidra, Lily, and Novalog,) insulins that are no longer on patent, but whose prices have gone up exponentially since 2002. 

$5,730.78 a year out of pocket for insulin, (probably a bit more because my RX pricing goes down the closer I get to my deductible,) for my/our elixir of life. 

I haven't even included test strips, or my pump supplies.

And I’m one of the lucky ones.

1. I have insurance

2. My Endo provides me with generous amounts of life saving samples of the drug (insulin,) that keep me alive, because he’s appalled at what my insurance charges me for insulin. 

I am so grateful to and for him. 

And I am so angry.

Angry that in the United States, insulin prices to go up for a multitude of reasons . 

Here's what I told the Lilly reps when I met with them privately in October to discuss in cost of insulin.

SIDEBAR: Kudos to Lilly for reaching out and meeting with Advocates one on one.

They were the only insulin company to physically meet with me on the east coast and hear my wants and needs - And I appreciate that very much .

They also met with others in the DOC around the country, re: insulin pricing. 

I told the folks from Lilly that I don’t want to demonize pharma or the companies that make insulin and other lifesaving drugs, because I don't.

 I'm not against profit and I know what companies who make insulin have done for nonprofits and people with diabetes.

But things must change because people can’t afford the very drug(s) that keep them/their loved ones alive - with insurance or without. 

And I DON'T CARE WHOSE FAULT IT WAS/IS - I WANT IT FIXED - And I will remember who led the charge to make things right. WE ALL WILL - every single one of us living with diabetes.

I stated that I don’t want hear about the Affordable Care Act, because insulin prices have been going up since 2002 - long before the ACA came to be - stop blaming blaming OBAMA. 

I mentioned that insulins that have long been off-patent, cost most of us more now, then when they were new. 

Insurance companies blame pharma, pharma blames Pharmacy Benefit Managers, PBMs blame everyone else. Toss in restrictive state laws and it becomes a vicious circle of blame. 

There’s enough blame for everyone to go around - and at this point, all parties involved need to stop pointing fingers and make things right.

Insulin Patient Assistance Programs help, but they don’t help enough. 

Those programs  don’t always provide the patient with enough insulin and many don’t qualify for the programs, let alone know these programs exist - see the link to the Diabetesmine link in the article below for all the reasons why. 

Also, these programs take time and paperwork. 

People with diabetes have enough damn paperwork. 

We spend countless hours on the phone with our insurance companies, our pharmacies and our Doctors. 

Nine times out of 10, we are the ones who catch costly mistakes made in our insurance billing - and it takes months to right those costly wrongs. 

And when you need insulin, you need it ASAP and everyday - waiting isn’t an option.

Try explaining to your insurance company about's tile floors that shatter glass insulin bottles, or why you suddenly need more than your normal amount of insulin due to harmones, the flu,a stressful patch at work or within your family, etc. 

They don't get it and they won't pay for it. They make you pay.

Click HERE for a breakdown of various insulin assistant program links/pros and cons. 

A meeting took place in few weeks ago with Pharma and Advocates in D.C came together re: Insulin pricing. 

Unfortunately, I didn't receive an invite to the meeting, but Diabetesmine wrote and excellent post on the meeting, and  I encourage you to read it. 

It’s comprehensive and does a beautiful and detailed job of explaining the big picture. 

For those of us who didn’t attend the Insulin Roundtable meeting in D.C. and for those who did, there are many ways your voice can be heard. 

For starters, pick up the phone and call your state lawmakers and share your story. 

Use the #DiabetesAccessMatters hashtag on Social Media. 

Call your insulin companies up and in nice, authoritative, calm, and kind voice - tell them your needs and your issues with insulin pricing. 

Get up dates from diabetesPAC  and see what diabetes issues are front in center in DC.

Sign the American Diabetes Association Petition to Stand Up For Affordable Insulin.

It’s easy, free and it can only help.

We all must come together and share our struggles about living with diabetes and the cost of diabetes, in order for change to happen.

Slate.Com : With Diabetes, "Even" Little Words Matter

This post started out as a post about the disgusting Mylan epi-pen price increase and how it mirrors the insulin prices increases, but then it turned into an article about Slate.com’s diabetes headline from yesterday, because the word "even" in the article title rubs me the wrong way.

I’m still working on the epi-pen article - and neither post is an Insulin verses Epi-pen article. Nope - both diseases are life threatening, both medications save lives and both price increases are appalling and I'm enraged at the eli pen price increase. 
WE ARE IN THIS TOGETHER.
Today’s post is about words - specifically the word “EVEN.” 
And how even little words can negate a price increase and add to diabetes stigma. 
#######
Yesterday, Slate.com ran an article with the headline: Good Lord, Even The Price of Insulin Is Skyrocketing.

Yep Slate, this is nothing new. 
The price of insulin has been skyrocketing for years -I now pay more for insulin than I did back in 1997 and more than my parents did when I was diagnosed way back in 1977. 
 Insulin is also a life saving drug, but nobody except those living with diabetes seems to care about the continual price increases. 

The Diabetes Online Community has been writing about about the high cost of diabetes for years - including the ridiculousness that is the ever increasing cost of insulins. 
Check out HERE, HERE, and HERE for a small sample of DOC voices on the subject.
Recently, the DOC has rallied behind #diabetesaccessmatters, because you bet your sweet ass it does.

Thank you, thank-you, thank-you  for featuring the insulin price increases in your publication. 
But,and of course there's a but. 

BUT what's with using the word "even" in your title? 
Using the word “even” in your title re: skyrocketing insulin prices detracts from the impact that those stratospheric price increases have on every single person living with diabetes who struggle to pay those skyrocketing prices in order to stay alive. 
Sidebar: You might say semantics, but not just my POV, btw. 

The word “even” lessens the struggle that millions of people living with diabetes are going through daily in order to pay for the insulin they/we require order to live. 

Diabetes is not cheap - and today it's more expensive than ever.

Wuestion: Would you have used the word “even,” to describe price increases for diseases such as crohn’s, life threatening allergies, or cancers? 
Nope, I don’t believe you would, so why is OK to use that word and in that context when describing the price increase of drugs for a group of diseases (type 1 diabetes, type 1.5, type 2 diabetes,) that millions and millions of people live with?

Not OK and here’s why. 

1. By using the word “even,” you’re subconsciously adding to diabetes shaming and adding to the stigma associated with diabetes. 

Being diagnosed with diabetes is often perceived as a character flaw, so maybe for some people reading your article, it might be considered OK for those of us who need insulin to stay alive, to pay a little more. 
It’s not OK.
Diabetes is not a character flaw - diabetes is hard fucking work and I haven’t had a vacation from my t1 diabetes in well over 3 decades. 
I’ve lived with diabetes longer than I haven't and diabetes accompanied me from third grade until I graduated from college and every day since. 
Diabetes was with me as I watched my favorite sister get married, went with me on my first date, stumble along side me through my first sexual experience and every one since. 
Diabetes has been my traveling companion to a dozen countries and at least 15 states. 

 Diabetes has made the move with me to different states; stood by me as I buried both my parents, discovered the Diabetes Online Community, and sat in the third row with me when my niece made her Broadway debut.
Type 1 Diabetes took the life of my older sister Debbie and broke my parents heart in the process. 
Diabetes has made me feel guilty and diabetes has me saying I'm sorry, even when I am anything but. 
Diabetes been the longest relationship I’ve ever had - braking up with diabetes is not an option at this time because there is no cure for my type 1 diabetes. 

Don’t even get me started on Diabetes Burnout!

Speaking of cure, the use of the word “even,” makes my disease seem less cure worthy and in actually, has the potential to lessen funds raised to find the D cure. 

But back to diabetes day to day - and the shear cost of living with diabetes. 
I know people with diabetes (type 1, t1.5, and type 2,) who can’t afford the cost of their insulin, or other medications, test strips, and diabetes durable medical equipment (insulin pumps, CGMs,) and play Russian roulette with their health every month because they’ve either run out of their meds/supplies before their prescriptions are due to be filled.
Or worse, they don’t have insurance and go without out because they’ve run out of money.  
Unfortunately, diabetes is not the same disease every day - some days you require more insulin, some days you require less. Sometimes you need to check your blood sugars 10 times a day, other times 7 will suffice. 
But if you live with diabetes, you're lucky if your insurance will pay for 5 test strips a day. And if you have diabetes and are on medicare - you only get 3 test strips covered per day. 
Did I mention that test strips are the litmus tests that people with diabetes use (as well as CGMS - but that a whole other insurance ball of wax for another post,) use to monitor their blood sugars and measure out their insulin. 
Insulin can kill if you admisister too much or too little - so YES, checking blood sugar is CRUCIAL AND EXPENSIVE.
Speaking of insurance - people with diabetes  (PEOPLE WITH ANY ILLNESS,) spend more time arguing with their insurance company over denials, mistakes, and fighting for lifesaving medications and procedures. 

So Slate, when you use the word “even” in your title, you aren’t doing PWD (people with diabetes,) a favor- because the majority of the public already think it’s our fault we have diabetes.  
Nobody, no matter the diabetes type, deserves to be treated any less than with respect because of their diabetes status. 

If you want more info regarding what it’s really like to live with diabetes, ask the thousands of people in the Diabetes Online Community who will be willing to share what it’s really like to live with diabetes - step by step, deductible by deductible, crazy ass high co-pay by co-pay. 

Lastly Slate, you’re a HUGE publication and online presence - and a great one.
I read your site daily and I learn and laugh from your posts. 
 Your words, even small ones have power, so please use them wisely. 

#dBlogWeek: Message Monday~

Day one of #DBlogWeek and it’s all about the message. And to quote Karen, the creator of #dblogweek, directly: " Message Monday: What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.” 

Living with diabetes isn’t about one thing - it’s about many things. 
The same can be said as to why I blog about diabetes and the messages that are important to me. I can’t pick one message or platform because there are so damn many - all important, each taking their place in front of the line on a rotating scheduled decided by life.
Diabetes and the media: I started blogging in 2007 because I was ticked at Halle Barre and her publicist’s inaccurate diabetes statements that were made in the media. 
I was sick of the diabetes inaccuracies and I needed both the public and the media to get diabetes right. I always considered myself a diabetes mythbuster and I started blog as a way to bust myths and stereotypes wide open and encouraged others to do the same. 
I want people to use the proper words when it comes to diabetes because words matter and words stick - accurate or not.
Humor: I’ve always used humor as a coping mechanism when it came to dealing with life - and life with diabetes, because I felt (and still do,) that if you can laugh about your diabetes, you can own your diabetes. 
I want others to laugh and become empowered because I know what it was like to lose someone I loved to diabetes because they felt like diabetes had all the power. 
Holy Crap, the DOC is AMAZING: About 2 months after I started blogging I realized that there was this amazing community called the DOC, and while I always knew I wasn’t the only one living with diabetes  - I never realized until I found my tribe that I’d been wearing an anchor of diabetes guilt around my neck for a long time - it was heavy and I was tired. 
And I never realized that diabetes burnout was a thing and that there was a loneliness to living with diabetes - until I  found others in the DOC and I no longer felt alone. 
It was because of the DOC that learned to flip my diabetes bitch switch for good, not evil. 

Becoming a Diabetes Advocate because it’s ain’t about me: Finding DOC has turned me into a passionate Diabetes Advocate because it made me realize that it wasn’t about me - it's about us - every single person in the world living with diabetes. 

We are in this together, no matter the diabetes type or which part of the world we live. 
#DiabetesAccessMatters for everyone - as does stripping safely and sparearose.org, and DSMA and that the Blue Circle is global and all encompassing. 
Through blogging I have found friends for life, who've taught and continue to teach me, every single day... and who have been there for me when I lost the one I loved the most. 

#IwishPeopleKnewThatDiabetes: Because of blogging, I’ve learned to not only cultivate my diabetes voice, I've become inspired by other diabetes voices  - and hopefully helping I'm paying it forward and helping others to discover and use their own d voices.

Finally, the big ass message is: WE MATTER. Every single person living with diabetes matters  - every single voice matters - and when added to the chorus of voices - mountains move and we are Khaleesi type of powerful. 
And yep, you know after last night’s Game of Thrones, I had to get a Daenerys Targaryan, aka Khaleesi reference in!
FLAME ON!