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.