Thursday, January 9, 2020

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.

Tuesday, January 7, 2020

Keystone First Denial - Fighting Back

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.

Wednesday, November 20, 2019

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.

Monday, August 5, 2019

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:

Wednesday, January 9, 2019

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!

Tuesday, January 1, 2019

2018 Insulin - The Cost

Grace is 16 now. There is less to write about regarding mothering her with diabetes, mainly because it is HER diabetes, not mine. I do my mothering in the background now, not so much in the forefront. She is a teen and manages on her own, with occasional help from me. The part I do still manage is everything associated with insurance. It's almost a full-time job in and of itself.

I saved Grace's vials of insulin in 2018. I wanted to see what it looked like for a number of reasons. One, to visualize it and two, to get at the cost of it all. Grace uses Novolog in her OmniPod pump, and has Lantus in the refrigerator as a back-up should the pump fail and she needed to do shots. Her prescription is for three vials a month of Novolog and one vial a month of Lantus.

Grace is not on private health insurance. In Pennsylvania where we live, she was eligible for Medicaid, as she has Type 1 diabetes. When she was diagnosed in 2009, she originally was on our private health insurance, but it was at the time insurers could kick you off if you had a pre-existing condition. When she was diagnosed in January of 2009, my husband's company was switching health insurances, and we had to submit that Grace had Type 1 diabetes. The company was Aetna and they promptly denied her health insurance. The state then picked her up through their CHIP (Children's Health Insurance Program). It turns out, children with diabetes are very expensive (!!!) and CHIP removed her in 2011, sending her to the state Medicaid program. She has been on Medicaid since 2011.

Let me be very honest with you, Medicaid has saved our family from bankruptcy and losing our home. On either of our private health insurance plans, the co-pays for medicines range from $20-$40. Grace currently has nine medications that would qualify. Every month. If we take the midline of the co-pay, that is $270 a month for co-pays alone each month. Doctor visits would be $50, and she sees the endocrinologist four times a year, that's another $200. Medicaid has no co-pays for medicines and no co-pays for doctor visits. She can stay on Medicaid until the age of 19.

It what I fear she faces after age 19. At this rate, the cost of living with diabetes is unsustainable. It's not only the cost of insulin, it's everything that goes along with it, from pump supplies to glucose tabs, to blood ketone strips to adhesive removers.

The most concerning, for me as her mom, is the rising cost of insulin. There are some great articles about the cost of insulin and what is happening. Here is one from The New Yorker. Here is one from CBS News.  Time. U.S. News. WebMD. And on and on and on. Do a generic search for 'costs of insulin' and up pops hundreds if not thousands of pieces about it. The costs is literally killing people with Type 1 diabetes. Again and again. It is unacceptable to me and to others.

Grace used 35 vials of Novolog in 2018. At the 'market price' of $300 a vial, that is $10,500 worth of insulin if she had to buy it without insurance. Just for insulin to keep herself alive. That's not even paying for needles if she has to inject and not even paying for her insulin pump. That's not even paying for every other supply she needs, just to stay alive.

There is a movement afoot, and I encourage you to join in. The organization leading it is T1International. They are founded by people with Type 1 diabetes who work for the accessibility and affordability of insulin and diabetes supplies for people around the world. Their hashtag of #insulin4all advocates for affordable insulin for everyone. EVERYONE. Dr. Banting shared his patent for insulin for $1, so that it could be shared with everyone and keep them alive. Before his insulin, people with Type 1 diabetes died.

I fear we are coming full circle. If you cannot afford insulin, it's the same as not having access to it. What happens when her insulin costs continue to rise and she is not on Medicaid anymore? I'm not sure as a college student she would be able to afford her insulin. She has her family, but shouldn't she be able to access life-sustaining medicine at an affordable cost?

I urge you to become involved if you love someone with Type 1 diabetes. It truly is a matter of life and death.

Monday, July 23, 2018

Diabetes Camp - Year 9 - She's a CIT!

It's July and that can only mean one thing - it's time for diabetes camp! This is Grace's 9th year at camp. Since her very first year of camp when she was 8 years old, she has only ever wanted one thing, to be a Counselor In Training (CIT). She applied in January and went through an interview process and was selected to be a CIT. She was beyond thrilled. Being a CIT means you get to attend TWO weeks of diabetes camp. One week is training at camp, and the next week is putting to use all the skills you've learned at camp.

And you know what else diabetes camp means? You are together again with your DBFF (Diabetes Best Friend Forever), the indomitable Lily! Lily also applied and was chosen to be a CIT too!

The mandatory 'exchanging of gifts' every time they see each other.
It was raining, so we did it in the back of the car!

And when diabetes camp starts on the day of your 16th birthday, well, that's even better. Why? Because the whole camp gets to sing 'Happy Birthday' to you at dinner time, and your DBFF makes you a 16th birthday crown, which you wear proudly.

As a CIT you get to do a lot of the 'grunt work' of the camp, as you are learning how to be a counselor. Everyone takes their turn being the lowest gal/guy in the ranks. We have all been there, done that. I told Grace to suck it up and do what is asked of her. She ended up liking all that was asked of her, even serving the campers meals appealed to her after a while. She also got certified in CPR while she was at camp, BONUS! She learned how to set up games and events, talk to campers about BGs, help others learn to carb count and watch counselors run groups and activities.

Lily, Emily and Grace (CITs) with Jon and Beca (Counselors)

As a CIT, you get to help check camper's BGs at 12 am and 3 am. I might have chuckled a little when she told me this on the drive home. She said 'OMG Mom, I am sooooooo tired!' My only comment was '10 years honey, 10 years' and she looked at me and said 'I know, I thought of that!' The night time checks are fewer now, but for years, my time was 2 am. I am still recovering from the sleep deprivation. 

She loved the younger campers. She said they reminded her of herself when she was 8 and 9 years old. She said 'Mom, one girl was just diagnosed 10 months ago, and here she was at a diabetes camp. She told me she LOVES it even more than Girl Scout camp. She said she finally had other friends who had diabetes!' Grace said she welled up. She remembers being that little girl. Not a soul did she know when she went at age 8. I remember dropping her off, thinking 'What have I just done?' I hope the mom of that young girl knows that she found her tribe here at camp.

Photo booth camp fun!
Camp pick up. Tired, grimy and happy.

Now that she learned all these skills, she goes back for the second week of camp! During the second week of camp, she puts all she learned to use, in a cabin with campers along with a counselor. She is home for a week, getting all things cleaned and getting lots of sleep right now. Then, she is back at a different camp run by Setebaid Services next week. I literally just wash it all up, then repack with Grace. 

I asked her if she had fun. She said she did. I asked about her friends. She said she was glad to see them. The most telling part was when we arrived at camp and entered through the camp sign.

'Ahhhhh, I'm home.'

And here's all you need to know about the friendship of Lily and Grace.

Camp Year 2
Camp Year 3
Camp Year 4
Camp Year 5
Camp Year 6
Camp Year 7
Camp Year 8