Keystone First denial - I win

Keystone First health insurance company (Medicaid here in PA) denied Grace her prescription for her Precision Xtra blood ketone test strips. You can read all about the denial in Part 1 and Part 2. They scheduled a 2:15 pm First Level Grievance hearing, by phone, with me today.

They called at 1:30 PM.

'The doctor has reviewed the packet (yes, I sent a PACKET of information!) and has granted the prescription of blood ketone test strips. The prior authorization will be granted and be good for six months. After six months, your endocrinologist will have to submit another prior authorization for the next six months. We do not need to proceed to the First Level Grievance hearing at 2:15 PM.'

So far, Keystone First, it's Penny, 2 and Keystone First, 0.

Keystone First Denial - Fighting Back Part 2

You will recall that I have filed a grievance with Keystone First (Pennsylvania Medicaid) for denying Grace her Precision Xtra Blood Ketone test strips. You can read about Part 1 of this process here.

Keystone First just let me know that we will be proceeding with the First Level Grievance on Thursday, February 6th at 2:15 PM. It will be a phone level grievance and not in person. They will call me, and I will speak to three people from Keystone First:

• a doctor of their choosing
• a non-elected member of Keystone First (no, I don't know what that means)
• an elected member of Keystone First (no, again, I don't know what that means)

I am to present my case why Grace needs Precision Xtra blood ketone test strips. They will listen. They may ask me questions or clarification. Then, they will make a decision to uphold their denial OR to overturn their denial and grant Grace the ketone test strips.

We did this in 2016. All of this. I spoke with A Dr. Gail Taylor on the phone, who was not, I repeat, NOT a pediatric endocrinologist. How do I know that? It was the first question I asked Dr. Taylor. She told me she was in internist and a family doctor. I asked if she treated patients with diabetes. 'Sometimes,' she replied. I was incredulous. I was defending my daughter's use of blood ketone strips to a doctor who had no familiarity with diabetes.


From JDRF



From Beyond Type 1


Defend I did. I came with background information, research and facts. Keystone First had been prescribing blood ketone test strips since 2013 for Grace, with no problem. Now, it was a problem as they changed their formulary. Grace's diabetes and her need for the blood ketone strips did not change.

So, on February 6th at 2:15 PM, I will do it yet again. Defend her need to check her ketones via blood drop as opposed to urine test strips. If you would like to know why she needs them, here is some information from Beyond Type 1 about diabetic ketoacidosis (DKA) that's good to know. Here is some more information about from JDRF.

It seems in denying Grace the blood ketone test strips, Keystone First is violating their very own policies about providing care, treatment, medicines and therapies that are 'medically necessary.' How do they define 'medically necessary?' Here is what they say in the Keystone First 2020 Member Handbook, p. 33:

Let's review, shall we?

Will blood ketone strips prevent an illness or condition?
Yes they will. They will prevent DKA.

Will blood ketone strips reduce the developmental effects of an illness or condition?
Yes they will. They will prevent the development of DKA which can lead to coma, hospitalization and even death.

Will blood ketone strips help Grace to get or keep the ability to perform daily tasks?
Yes they will. If she is able to manage her high blood sugars and know what to do, she can continue on with school and other activities. Not being in DKA means she can continue with her life.

So, Keystone First, let's roll.

Happy 11th Diaversary Grace!

It's been 11 years since Grace was diagnosed. Way back in 2009 she was a little 6 year old. She's now 17, and a Senior, heading to college in the Fall. It's part hard-to-believe and part not-so-hard-to-believe-at-all. Time flew and time stood still.

Here we are, at the beginning of yet another journey.

Grace made this for her diaversary, so I will leave it to her to say all that needs to be said.

Love you, Bird.

Year 10

Year 9

Year 8

Year 7

Year 6

Year 5

Year 4

Year 3

Year 2

Year 1

Keystone First Denial - Fighting Back Part 1

Grace uses Precision Xtra Blood Ketone strips to check her ketones when her blood sugar is over 250-300 mg/dL. As a 17 year old Type 1 diabetic, with hormones at play 99% of the time, and all that comes with that, there are days when she hits that high once or twice a day. She checks her ketones with the blood ketone strips. They are accurate and guide her decisions for her care and next steps. She keeps a Precision blood ketone meter at home and one in school. She's been using the blood ketone strips since 2013.

Keystone First, her health insurance provider, has denied her prescription from her pediatric endocrinologist for the blood ketone strips. The reason for their denial is:

You read that right. The drug's manufacturer doesn't participate in some drug rebate program, so they will not cover it. There is no medical reason they list. There is no 'not medically necessary' mentioned. There is NO MEDICAL REASON at all. It's sort of shocking, no?! Here is the actual denial letter:

Well, folks, this is not my first rodeo. You see, Keystone First denied her these Precision Xtra blood ketone test strips in March 2016 too. Then they denied as they were 'non-formulary.' I filed a grievance against Keystone First in March 2016 because of that denial. They actually went ahead with a First Level Grievance hearing phone call with me on March 28, 2016. 

I had to speak to a Keystone First doctor of their choosing, and defend why my daughter needed blood ketone strips. This doctor was NOT an endocrinologist. How do I know? I asked the doctor directly. The doctor was lost on words like 'diabeticketoacidosis (DKA)' and I knew it. During the grievance hearing phone call, Keystone First said they were not necessarily stating she needed to use urine ketone test strips, but they were denying the blood ketone test strips.

I lost it then. I launched into the folly that is urine ketone testing in 2016. 

'What color do you think it is - light purple, medium purple? No, maybe it's light brown. Do you think I'm in danger? Let me urinate again on a strip in a dirty bathroom. Darn, dropped it in the potty. No, it's not a pregnancy test strip." 

All those thoughts came out of me at once. It is ludicrous and borders on medical malpractice to suggest that Type 1 diabetics go backwards in their care. I said so. 

The next day in 2016, Keystone First overturned their denial. 

They approved Precision Xtra blood ketone strips for her with a prior authorization request in 2017 and in 2018. They did not deny the strips. They did not request a hearing with me. They approved them for the two years since. Now, I get a denial letter from the once again. This time, the reason is not even medical, it's because of some rebate program.  

I have filed a grievance against Keystone First once again. In my grievance, I included all of the 2016 grievance paperwork, including my notes from the phone call, my original reasons for grieving the denial and the letter from Keystone First overturning their decision. If they decide they want to go down this road again, I will go down this road again. And I guarantee you, my daughter will not be turning to urine ketone strips and will be approved for Precision Xtra blood ketone test strips.

I have also contacted the Pennsylvania Health Law Project which helps people who are on Medicaid with denials and not getting the treatment, medications and help that they need. 

Game on.

World Diabetes Day 2019 by Grace

November 14th. World Diabetes Day.

This entire month has been dedicated to raising awareness about Diabetes, but one month truly is not enough time. This disease has no off days. It’s 365 days a year, 24 hours a day, and ALWAYS on your mind. This disease consumes your entire life and every single piece of energy you have. Diabetes is a full time job to keep yourself balanced with good blood sugars, correct insulin coverage, correct carb ratios, correct basals, and MORE. Diabetes has taught me an enormous amount of lessons in the long 10 years that I have had it. It has taught me to self advocate and just to accept myself for what I am. The journey to this point though hasn’t necessarily been an easy one. It has been definitely more low points than high points. 

Lately, I’ve been struggling with dealing with everything that comes with it. I often wish I could just be a normal 17 year old. I am so tired of all the checks and alerts and pump changes and just having this disease in general. There are days where I cry and cry about this life I was given. I cry about how my parents have had to deal with all of this (including insurance battles!), while just trying to raise their daughter. I cry about how my friends get to live their lives and never have to worry about if their blood sugar is crashing. I cry about my future with Type 1 and how I will never escape it. I never asked for this to happen to me and I question; Why me?

However, I always look to the other side. I realize how grateful I am to still be alive and healthy and have the access to things I need to live. I’m also forever grateful for the community I’ve found through this disease. My camp family will forever hold a special place in my heart. They showed me how to live life and not let Diabetes live it for me. Most importantly, they understand and I will always be extremely thankful for them. So, my advice to you on this World Diabetes Day is to educate yourself on this disease and all the things Type 1 Diabetics have to deal with on a day to day basis. To all my fellow diabetics out there, you are so strong and know that there is hope for a day where Diabetes will be in the past. Here’s to hopefully not too many more years living this life with Type 1.

Diabetes Camp - Year 10!

When Grace was 7 years old and went to diabetes camp for the first time, I remember her telling me something on the ride home from camp. "Mom, I want to be a counselor when I grow up!" and I smiled. I was just worried about one more year of camp, and here was Grace, telling me the future.

It's all come true. Grace is now a diabetes camp counselor! This year was her 10th year going to camp, and she went through the CIT 1 and the CIT II program last year and the beginning of this year at camp. She completed both and was promoted to Jr. Counselor, with an invitation to interview for a counselor position at next year's camp. I am so very proud of her.

It was her 17th birthday while she was away at camp. That was bittersweet. I was reassured that she was spending her birthday exactly where she wanted to, at her favorite place to be, among friends. Her fellow counselors decorated her bunk so she woke up to lights and signs for her birthday. It was incredibly sweet.

Diabetes camp looks different when you are older. There is so much more independence. There is so much more autonomy. There is so much more responsibility. There is so much more caring for others. Grace likes the younger campers more than the older teen campers. She likes to keep busy. She's responsible for helping with 12 am and 3 am blood glucose checks on the campers. She's responsible for helping plan activities and run them.

Camp looks different for me as her mom too. She's solo on her management. She actually let me follow her on Dexcom while she was away at camp! She texted once or twice about it, but otherwise it was all hers. And I didn't say one thing about it all week. She got through it amongst her people. She managed it all. Was it 'pretty?' I don't really care. I don't. I am done with the illusion that if we just get the right A1C, we have the perfect diabetic and the perfect life. And I am saying it very clearly, this is HER diabetes, NOT MINE.

Diabetes camp, for Grace, has saved her soul. And I don't say that lightly. She is more herself at camp. She is comfortable, in ways that are not possible even among her close friends at home. She is understood. She is incredibly happy to meet others and share her life. Onward she goes.

You can visit her past years at diabetes camp here:

Year 9

Year 8

Year 7

Year 6

Year 5

Year 4

Year 3

Year 2

The first year

Year 10

Grace was diagnosed with Type 1 diabetes on January 9, 2009. Today marks 10 years.

I remember thinking about milestones like this when I was in the hospital with her. I thought, what will it be like for her to live 5 years, 10 years, 25 years with diabetes? They were thoughts I entertained as other, more devastating thoughts lurked in the background. It was quite a shock, to find ourselves with a 6 year old with diabetes. It still is sometimes. The memory never quite leaves you of the day.

It was such a strange thing, to have her diagnosed. The moments themselves are clear in my mind, as if it happened yesterday. The parking outside the ER entrance, getting her out of her carseat, the walk in to the ER, the sheets on her hospital bed, her stuffed elephant she brought with her. I can make it all out in my mind. The hospital is close to us, and it's our go-to hospital for sickness and for visiting loved ones. I could lead a path right where we walked. I feel a rush of it all as I enter the hospital, each and every time.

Wouldn't it be something for me to have seen where she is now? I didn't know what 10 years with diabetes would do to someone, and do to a family. In some ways, it shattered us and forced us to rebuild. In many ways, it brought our love for Grace to the forefront, in fighting the battles she was at times too young to understand. It has led us to meet people we would not have otherwise met, and have the grandest times. I wish someone would have told me 10 years ago about those parts. I would have loved to hear it.

Grace is 16 now, and a teenager, and all it entails. She is girl-on-her-own, with a social life that rivals a pop star. She dances competitively on a dance team. She rocks the 11th grade. She has her sights set on college. She manages her diabetes with a pose that I surely would not have had. She gets ticked off with diabetes, and she also rolls with it. I marvel at all the times she packs up her diabetes kit, grabs a juice and a snack, and tells me where she is going and what time she will be back, not mentioning her diabetes once.

So, to the 6 year old Grace, who I thought was shattered by this diagnosis and would never do the things she wanted to, because it would hold her back, I want to say something.

You should see her now. She's glorious.

Happy 10th Diaversary, sweet Grace!
oxo

Year 9

Year 8

Year 7

Year 6

Year 5

Year 4

Year 3

Year 2

Year 1