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Posts tagged ‘HTA’

Tidbits from JDRF’s Seattle – Sweden Diabetes Conference

This weekend, instead of enjoying the very last day of sun in Seattle, Erik and I went to JDRF NW’s 6th annual Seattle-Sweden Diabetes Awareness Day – and were so glad we did. The event brings top researchers from the US and Sweden together to give updates on their work, much of it immediately applicable to daily life with T1D. JDRF recorded all talks and will post them online, but these pieces of information were highlights for me (most of the talks focused on kids, so apologies to adult PWDs):

Hope!

  • 2-3 years after diagnosis, most kids are still producing insulin and c-peptides
  • Overall A1Cs have been steadily dropping over the years
  • Daily exercise lowers A1Cs on average by 1 point
  • Based on genetic and antibody testing, we can now predict development of T1D with 60% accuracy  (another study had 85%), and onset can be delayed by up to 4 years.  This would hugely cut down on the # of kids who are in full DKA by the time they’re diagnosed (50% of kids under 2).
    See TrialNet on how to get screened.
  •  Only half of T1 risk is genetic (at dx, only about 90% have it in their family) – the rest is environmental, which means there’s hope for prevention. One possible trigger may be illness without fever, whic increases the risk of developing antibodies by 3X! Fever actually reduced the risk. When a parent in the audience brought up that using Tylenol with vaccinations seemed to dampen the immune response and asked whether researchers would recommend not giving Tylenol for fevers, the circumspect answer was essentially “Yes.”
  • There are many brilliant, humble, passionate researchers around the globe working and collaborating on detection, prevention, management, and a cure. Obvious, true, but it makes an impression to see so many in one place on one day.

Dealing with Lows (esp. after exercise)

  • Night time really is different: even children without T1D have a blunted response to (mild) hypos during sleep.
  • One hypo puts you at risk for another, because the liver’s glucose supply has already been tapped.
  • The night after exercise, hypos usually occur betwee 12-2am.
    Suggestion (for pumps): use  -20% basal from 9pm – 3am, and suspend or drastically lower basal during exercise. And (as MDI users know), eat protein before bed – it turns to sugar overnight and helps buoy BGs.

Most interesting

I love how much data the Swedes have about T1 (the CDC has just started tracking it)! All kinds of interesting points came up:

  • A1Cs by city vary widely, which shows that higher A1Cs aren’t just the individual’s fault. Heatlth care policies have huge impact (shocker).
  • Most children are diagnosed during fall and winter. They didn’t suggest a reason, but there’s annecdotal evidence that abrupt temperature changes from warm to cold may trigger T1. There’s a theory that diabetes in humans may have developed during the Ice Age as an adaptation to extreme cold, with higher blood sugar preventing frostbite.
  • There are gender differences that need to be understood:
    Girls have a higher a1c than boys right from the start, but the difference disappears (oddly enough) by the time boys and girls are 15 years old.
    Men are more likely to develop complications.

What’s unique about WA state

  • WA and CO have the highest rates of T1 in the country (a vote for sunnier climes)
  • WA state is hardest place in the country to get CGMs and even pump supplies . For whatever reason, insurance companies push back harder here, and there are many hurdles to jump through. (This year’s HTA fight was just one example.)

Something to keep an eye out for:

  • Dr. Hirsch gave a very unsettling talk about “biosimilars” (generics): In the next few years, patents for most insulins now in use will expire. Insurance companies will be pushing for people to use biosimilars, but the FDA rules around production are so vague that it’s not clear in what ways biosimilars will be allowed to vary. “Would you give a biosimilar to your 3 year old or 80 year old grandmother?” Dr. Hirsch asked. “I wouldn’t.”

The latest on the Artificial Pancreas (Aaron Kowalski):

  • The Medtronic Veo (which shuts off insulin delivery when blood sugar is low) is available in every single country that sells pumps except the US! 50k Veo pumps have been sold outside the US, with no incidents of DKA (as the FDA fears) and many of hypos averted by shutoffs.
  • The next step in the artificial pancreas would be predictive algorithms, which research has shown prevent 75% of hypos. With A1C of 6.5, for example, you’re spending 1.5 hrs of day low – reducing that by 75% would mean just 20 minutes a day.

It Takes a Village

  • An international NovoNordisk Dawn study found that family & social support are the key factor in living well with T1D (having lower A1Cs, less depression, etc.). This runs counter to the traditional view that puts the onus of responsibility on the patient, and it makes sense that the burden is more easily carried and better dealt with when shared.

There were a few laughs…

  • There was a dark laugh at mention of the WA state HTA’s assessment that the impact of blood sugar testing was controversial, and that frequent testing lead to depression and hurt the fingers. I learned more about the back story: the state’s committee had actually done a comprehensive data review, but because the reviewers had no diabetes expertise and were looking primarily for cost savings, they didn’t draw the right conclusions. Fortunately, experts (and parents, PWDs, and the JDRF) had a chance to submit research and testimony that turned around the decision.
  • If you’ve ever heard Aaron Kowalski talk, you know about his obsession with diet soda. Throwing his arms wide at the conference (held at Microsoft) and gesturing to the fridges stocked with free diet soda, he grinned, “I love this place!”
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Do the right thing – WA state HTA will cover strips after all

When I first heard that the Washington state HTA (Health Technology Assessment) committee wanted to limit T1 kids on WA state Medicaid and public employee health insurance to just a few glucose testing strips a day (because testing more frequently leads to “depression”), I was floored. Seriously?! When you leave the hospital after a T1 diagnosis, you’re sent home with instructions to test blood sugar 8-12 times a day, and every 15 minutes when you’re fighting seriously low blood sugar. Incorrect dosing of insulin is one of the highest causes of preventable hospital injuries, even with blood sugar testing – to limit testing to a few times a day isn’t far off from a death sentence. “Depression” just comes with the territory!

Happily, the HTA just decided to cover unlimited testing strips and conditional coverage of  CGMs. The vendor they’d hired to research the effectiveness of glucose testing had apparently concluded that there was no “clinical” evidence to support the value of glucose testing – no studies had ever been done with a control group of kids not doing glucose testing. Dr. Hirsch from the University of Washington dryly pointed out that this sort of testing hadn’t been done, because it would be unethical – it would most likely kill the control group. A full roster came out to testify, including one of this year’s JDRF Beat the Bridge Ambassadors, Dr. Hirsch (UW Prof. of Endocrinology), Dr. Mauseth and other pediatric endocrinologists, industry advocacy, adults with T1 and parents of children with T1.

This is great, not just for WA state residents with state health insurance, but for everyone with T1 – this decision was being watched by insurance companies across the country. Bullet dodged, for now!