Advocating For T1D in D.C. (10 Actually Exciting Takeaways)

Recently I returned from a whirlwind trip to Washington DC, where I advocated for Type 1 Diabetes with folks from all over the U.S. Our primary mission was to garner support from our state’s (Oklahoma) senators and representatives for the renewal of the Special Diabetes Program, and to cover the JDRF stance on the ACA. I was blown away by many aspects of the trip, and would like to share with you my top 10 takeaways, in countdown form.

  1. PERL Study: Scientists with the NIH are looking into generic drugs to treat complications of diabetes. This is fantastic because we all know that pharmaceutical companies are in the business of making money, so there is no reason to investigate these types of treatments. One study that is showing promise is the use of a generic drug for gout, Allopurinol ($12/month w/o insurance), to treat early renal loss (a common diabetes co-morbidity). Over 500 people with diabetes are taking part in human trials–completion is set for Summer 2019. 
  1. You can’t take it with you: As much as we all love these fantastic pancreases, we can’t take these wonky little suckers with us when we die, so why not give them to science. SDP funds and JDRF donations created the Network for Pancreatic Organ Donation with Diabetes (nPOD). Once you pass through those pearly gates, those precious little underachieving pancreases will be distributed to 23 labs across the US. Researchers are extracting individual beta cells to determine what components of the cells are the target of the immune attack. The data collected from each lab is shared through the HPAP, so multiple researchers can learn from each other.   *DISCLAIMER* if you haven’t noticed, I am no scientist or a doctor, so you’re getting a lay-person’s interpretation of things that really smart people do.  I watched Bubble Guppies with a 4 year old today, my only accomplishment besides putting a bra on today.
  1. 3 Stages of Type 1 Diabetes:  

Stage 1 is the presence of 2 or more antibodies with normal blood sugar.

Stage 2 is the presence of 2 or more antibodies with abnormal blood sugars.

Stage 3 is the clinical diagnosis of type 1 diabetes

Below is a link to a great article on staging, read it. The staging is incredibly important to catching the disease early, we need the FDA to recognize these stages so patients can have more resources to be better prepared for stage 3. My youngest would’ve been in stage 2 when we realized he was type 1 but there were no resources because he wasn’t clinically diagnosed yet. We had to wait until his A1C was over 6.5 for official diagnose, he was 6.4 (insert eye roll), a tenth of a point kept my child from the medical attention he needed. We only received one test strip a day from insurance until guess what happened–his A1C went from 6.4 to 11.1 in less than a month. We deserve better! If the FDA will recognize the stages, insurance companies will follow suit with coverage.

  1. Freestyle Libre: A speaker mentioned to us that while at a conference on diabetes in France a doctor in Europe spoke of a child 6 months into diagnosis that cried when he had his finger pricked in his office. The Freestyle Libre is so accurate that it has replaced finger pricks in Europe and requires no calibration. Can you imagine not ever pricking your fingers again? AMAZING. My kids are currently trying these out at our endocrinology clinic, with results soon. Check out the article, I choke up just thinking about small kids being liberated from constant finger pricks. The Libre could be available to adults in the US as early as May 2017.
  1. Dial up those insulin pens folks and book a flight to D.C: (A diversion into the food world is necessary, bear with me) A quant little restaurant bakes Pop Tarts from scratch, yeah, you heard me! This place is steeped in history, I recommend wearing elastic waist pants to dinner, because you won’t be disappointed. The short rib Sammy is fantastic!
  1. Be an Advocate: You don’t have to fly half way across the nation to let your voice be heard. You will be alerted by the JDRF to contact your Representative and Senator about important issues pertaining to t1d. The best part is they will send you a link with a pre-written letter although you can and should personalize it, then with the click of a button it’s sent onto the correct congressman. This is the easiest way to get involved so just do it.
  1. Trial-Net Fun Fact: Get your family involved in research. I’m sure most of you are already familiar with Trial Net, so I’ll keep it short and sweet. The biggest takeaway is this–TrialNet will mail you a capillary tube so you can easily submit a specimen. Also, there’s a research study at TrialNet that is treating people in the earlier stages of t1d (refer to #8) with oral medication to stave off the disease as long as possible. This is showing great promise in trials. I would give anything to have enrolled my youngest in Trial Net prior to his diagnosis to have had an opportunity to be part of this study.
  1. Celiac Disease: You can have celiac disease with no tell-tell symptoms. I met a family of 4, 3 of which have the disease. The family member with the most damage to his intestines has no visual or physical symptoms (i.e. stomach pain) when he eats gluten. I was stunned! I always assumed all celiac sufferers were symptomatic. Also if you have t1d you have a 15% chance of developing celiac.
  1. The CURE Hype: The earliest we could possibly have a viable cure is at a minimum 15 years away. With this minimum 15 years, it’s vital to improve the health of individuals with t1d so that they can make it to the cure. We need to be more supportive of preventative research and alternate treatments (artificial pancreas and encapsulation).
  1. The Teddy Study: This might be one of the most important research studies of our time, seriously Clark! This is a 21 year study with an expected completion date of 2023. The study screened 425,104 newborn babies and was able to enroll 8,677 identified as genetically high risk. They follow these children every three months to closely monitor for immune attack. I’m talking blood work, stool samples, what the kids eat, their environment, were they ill, the list goes on and on. They’ve collect over 2.7 million samples for analysis thus far, it’s going to take a super computer to compute all the data. Initial data shows that 722 children have autoimmunity and 267 have type 1. This project will help us understand what triggers t1d and potentially a pathway to the cure!

One thought on “Advocating For T1D in D.C. (10 Actually Exciting Takeaways)

  1. This is such incredible information and I think you for ALL you do for this cause, Trish Winters! Your boys are lucky to have YOU!

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