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Congress Listens!

“You need a time out!” Luke said, as I snarled and stomped down stairs. He was right. I’d just gotten back from four days of glad-handing, schmoozing, and pitching T1 research funding in Washington DC, and I was exhausted and having a toddler-class melt down.

But it was so worth it. Every year, JDRF brings advocates to DC to lobby their state legislators  on one or two specific points, and it’s an antidote to cynicism. JDRF takes a couple days to bring the advocates together before turning them lose on the Hill, and these are all some extraordinary people. Some have lost children to T1, some immediate family, many live with it themselves, and all have harrowing stories – yet they positively radiate joy and enthusiasm. I wish there had been more time just to hear everyone’s stories and meet more bloggers in person. I briefly met Karen and Jeanne and hope to meet Moira, Hallie, and Kathy some other time.

There were glimpses of DC’s underbelly. One morning, as we waited in line to get into one of the Congressional buildings, we saw a lobbyist flap down the stairs past us, with his garish tie, trenchcoat, and all. He cackled, “Don’t bother going in – we got all the money, and there’s nothing left!” DC humor.

But we were there as volunteers, and staffers visibly softened when we explained we were there for children, siblings, parents, friends, or ourselves. Sympathy doesn’t always break down along party lines – often it’s a staffer’s or legislator’s personal connection that turns an office into a supporter. Not all legislative offices genuinely back continued research funding, but most find the “ROI” pretty compelling. One third of Medicare costs currently go to diabetes, and one out of three Americans born this year will develop diabetes. Most will develop Type 2, but Type 1 rates are doubling every 20 years, and the average age of diagnosis keeps dropping (Luke will soon be typical).

Last year, lobbying (from the ADA and the National Indian Health Board as well as JDRF) renewed the Special Diabetes Program, which provides $150 million annually for research. It has helped reverse retinopathy, stopped T1 from progressing in trials, funded smart insulin development, and moved the Artificial Pancreas closer to reality. All this will disappear unless Congress votes to renew the SPD this year (hint – you can help in minutes).

Friday, as we arrived, we heard that the FDA just approved Artificial Pancreas out-patient trials that will run till 2014. Thanks to the 100,000+ signatures JDRF gathered, and thanks to Congress urging the FDA to move ahead “expeditiously” with a framework for the trials, we’ve come to the point where someone like Sen. Shaheen’s granddaughter might get a real vacation from diabetes.

And my son won’t have to put me in time-out when I come home, exhausted but happy.

A few random images (thanks to Brendy, the other WA delegate, who helped me overcome my aversion to cameras!):

Brendy deep in the glamorous part of lobbying - writing notes in the crowded cafeteria

We brave the tunnels under the Hill

Latte = strong coffee + lightener?!

Some legislators are roughing it...

Sign the Petition: Tell the FDA to Get a Move On!

Here’s another opportunity to tell the FDA to get a move on with its consideration of the artificial pancreas (the nitty gritty: guidance around out-patient trials) – take a minute and add your name to the petition!

http://takeaction.jdrf.org/site/PageNavigator/APAC.html

The first phase of the artificial pancreas, a pump that suspends insulin during low blood sugar, is already approved and in use in EVERY COUNTRY where pumps are sold, EXCEPT THE US. The FDA is concerned that allowing pumps to suspend insulin during a low could cause high blood sugar afterwards – or DKA.

Well, Medtronic has sold 55,000 units of its first-phase artificial pancreas, the Veo, with no recorded incidents of DKA, and many annecdotal and documented incidents of dangerous low blood sugars averted.

In the US, the next step is out-patient trials of the artificial pancreas. The JDRF proactively submitted proposed guidance around these trials to the FDA, and the FDA responded with guidance that is cumbersome (like requiring every version of every separate CGM to go through trials to prove safety and effectiveness) and could drag trials to a halt.

The FDA is risk-averse, does not fully understand that regulating blood sugars is a dangerous process as it is (the FDA believes that allowing any automatic regulation of blood sugar is inherently dangerous), and really, really needs to hear from everyone that lives are at stake.

Please take a minute to sign the petition.

If that made you feel good (it should!) there are a few other things you can do:

If you want to help the JDRF in its efforts to get the artificial pancreas into our hands:  

  • Sign up to become an advocate (you’ll get emails asking for help with online campaigns – takes maybe an hour of your time a year and has a huge impact).
  • Sign up for the Promise to Remember Me campaign: meet with your state legislators in person and tell them what the artificial pancreas could mean for you, your family, or your loved ones. The focus of the Promise campaign this year is on getting the FDA moving – your legislators need to hear from you! They have many other things pulling at their attention right now – we need to keep this on their radar, and in-person meetings are very effective at doing that.

Make a Difference – Come Meet Your Legislator!

How do we improve life with T1D and move toward a cure? Via research and lobbying. If you want to have long-lasting impact on T1D but don’t live in a lab, sign up to meet your legislator this fall and ask them to “Promise to Remember Me!” JDRF started these annual meetings between constituents and Congressional members in 2000, and they’ve helped renew Special Diabetes Funding ($36 million for WA state alone), protect stem cell research, and now move us closer to getting a V1 artificial pancreas.

You do not need to be involved in JDRF to attend. I was not involved when I showed up at a “Promise to Remember Me” meeting with my legislator, Rep. McDermott, last year. I couldn’t believe that all I had to do was grab my (cute) son, waltz into my legislator’s office, and tell him about life with a toddler with T1D – JDRF provided that direct channel.

When I went to DC in the spring with JDRF, I saw Luke’s picture on McDermott’s desk. Sure, maybe his staff pulled it out and dusted it off for our visit – but it was there. I saw other WA legislators ask by name after kids and adults they’d met in fall Promise meetings – it really does make an impact. Politicians like to say “yes” and like to help people (even if they like to help themselves as well), and the Promise meeting is an easy “yes” for them and puts a face to the issue of T1D. Don’t underestimate the impact that can have. Politics is about competing narratives: if you give them a good story about life with T1D, they will listen, remember, and even use your story on the floor.

If you don’t believe me about the power of “Promise” meetings, take it from some great bloggers: Scott Johnson and Moira McCarthy.

If you live in Seattle (district 7), come meet Rep. McDermott with me and make a difference! Our Promise meeting is August 31, 10:00am. It’s a 15 minute meeting but can have lasting impact. Email me if you’re interested: krisfitz (at) live (dot) com. Find your legislative district here: http://apps.leg.wa.gov/DistrictFinder/Default.aspx

Tell the FDA: we need pumps that suspend during hypoglycemia!

 Bennett (Your Diabetes May Vary) just posted that the FDA is taking comments on whether to allow pumps to suspend insulin delivery when blood sugar is low.

Um, let me think….

Hell, yes!!!

Repeat after me: Dear FDA… is GREAT, but in case you just want the quick and dirty, here it is:

Proposed FDA guidance they’re seeking comment on covers:  
  • Guidelines to consider approving low glucose suspend
  • Risk of raising A1C with such a system
  • Considering studies for people under age 18

Comment (comment period closes Sept. 20), call or email your Congressional representatives to let them know about this incredibly important issue (setting aside how we feel about most of Congress right now), and sign up to meet with your representatives personally about this issue in the next month or two: http://promise.jdrf.org/

Go, DOC!!!

 

Here are the comments I submitted:

I am a parent of a three year old child with type 1 Diabetes, diagnosed at 14 months. He uses an insulin pump and CGM, and we rarely sleep through the night: due to the immediate danger of hypoglycemia, we usually wake up several times to check his blood sugar, especially when he’s sick, the weather changes, he’s going through a growth spurt – there are almost infinite variables that can change how much insulin the body needs, and young children need such tiny amounts that the slightest change in need can easily cause severe hypoglycemia.
If his pump were allowed to suspend based on a predictive low, it might someday save his life.
As you consider low glucose suspend and the potentially higher blood sugars it might cause, please keep in mind that a number of young people with T1D have recently passed away due to over night hypos. JDRF in-patient trials have proven that the increase in A1C from glucose suspend is negligible and is more than offset by the tighter control allowed by having an artificial pancreas – even one that just consists of glucose suspend.
In short, hypoglycemia kills IMMEDIATELY and often without warning, despite near-constant vigilence. Hyperglycemia is a long-term risk, and perversely one that is increased by NOT having glucose suspend: people with T1D often chose to let their blood sugar run higher in order to be safe, especially through the night, because there’s currently no technology to suspend insulin when that happens.
We’ve already lowered our son’s A1C 1 full point just by having the CGM – it allows us to keep slightly tighter control, knowing that the CGM will often alert us to oncoming lows.
I strongly urge the FDA to prioritize expeditious approval of glucose suspend technology, already approvied in Europe. Hypoglycemia is taking the lives of American children and adults who could be saved while we wait.

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