Category Archives: Advocacy

PPACA Survives intact.

June 26, 2015 – 10:32 am

Healthcare advocates throughout my country were thrilled yesterday when the U.S. Supreme Court upheld the part of the Patient Protection and Affordable Care Act (“Obamacare”) that allowed for subsidies to help patients pay for healthcare insurance obtained through insurance exchanges nationwide.

Had the justices overturned that part of the legislation, something akin to chaos in the insurance marketplace could have ensued, owing to the fact that many who can barely afford coverage with the subsidy probably would have dropped their coverage and risked prosecution for not being covered at all. It might have meant that many who are relatively healthy but still couldn’t afford the coverage without a subsidy would drop their coverage, which would have put insurers in a tough spot, with too many chronic and acute issues to pay for, and not enough money coming in from healthy patients to make up the difference.

The vote of the nine-justice panel was 6 to 3. Chief Justice John Roberts wrote the majority opinion, once again surprising many who thought he was the perfect neo-conservative to lead the highest court in the land when President Bush appointed him to the post a decade ago. His remarks included this little nugget:

”Congress passed the Affordable Care Act to improve health insurance markets, not to destroy them.”
 
 
Imagine that… he goes against nearly every republican in America, using one of their biggest rallying cries to do it: Free Market Capitalism!

The dissenting opinion, given from the bench by Justice Antonin Scalia, smacked of sour grapes, though I guess every dissenting opinion does to some degree. At one point, he got laughter from the courtroom for saying “We really should start calling this law SCOTUS-care”. He also referred to the majority opinion as “interpretive jiggery-pokery”.

Well, I’m just a high school graduate, so I never learned from books that contained such eloquent terms as “jiggery-pokery”, but I really hope that Justice Scalia, or Justice Alito, or Justice Thomas, who also sided with the minority, never have to experience moments where they have to choose between paying for healthcare for themselves or a loved one, and paying the rent. Republican members of the U.S. Congress, for their part, are still vowing to repeal this important legislation. They’ve already tried repealing all or parts of it 67 times.

I will also point out that a day later, our fair republic still stands, and still stands for the right to healthcare for everyone.

If we’re not for that, what are we saying? Really… if you’re against my right to affordable healthcare, are you saying that, although my diagnosis of Type 1 Diabetes is not my fault, I don’t deserve to be able to afford to pay for care, drugs, and devices? Are you saying I should “work harder”, “get another job”, “do whatever it takes”, or adhere to some other catchphrase out of the conservative handbook?

Well, let me quote from another one of your favorite books, the holy bible.
Matthew, chapter 25, verses 44 through 46:

“Then they themselves also will answer, ‘Lord, when did we see You hungry, or thirsty, or a stranger, or naked, or sick, or in prison, and did not take care of You?’ “Then He will answer them, ‘Truly I say to you, to the extent that you did not do it to one of the least of these, you did not do it to Me.’
These will go away into eternal punishment, but the righteous into eternal life.”
 
 
Again, I am thrilled at the result of yesterday’s ruling. I do recognize that the law isn’t perfect, but had the challenge to the law been upheld, it would have been even less so.

Now, as I mentioned on Facebook yesterday, we can… continue to defend this law against all manner of attacks. Hopefully, yesterday’s decision makes defending it easier.

In other news: The Supreme Court just handed down another ruling, legalizing gay marriage nationwide. It’s been a busy week, Justices. Take the rest of the summer off.
 
 
 

By StephenS | Also posted in Healthcare | Tagged , , , , | Comments (0)

Golden Ticket!

June 24, 2015 – 9:18 am

You may have seen this already… but just in case you haven’t, take note:

Thanks to Medtronic there is an extra ticket, including travel expenses, available to the two-day MasterLab advocacy workshop in Orlando in just about two weeks.
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So… for all of you who ask, “How come the same people always go to these events?”… Heeeeere’s your chance.

Even though I already promised I wouldn’t apply for any scholarships this year (I won’t go into that again), I almost jumped in on this too. But in the end, it seemed too much like a scholarship, and I want to be true to my promise to give someone else a chance this year.

Do you want to go? CLICK HERE for the link to the short survey. There’s a lot to read, and you have to be ready to travel if selected, but what an opportunity!

You have until Sunday, June 28 to submit your responses. After that, no complaining, okay?

I know I’ve said this before, but it’s worth saying again: MasterLab was an transformative experience for me, and it can be for you too.

Last year was just a day. This year, two days, July 7 and 8. Learn… grow… experience… MasterLab.

I will soooo miss being there. I will be thrilled for you if you are there holding the golden ticket.
 
 
 

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Thank you for your support.

June 16, 2015 – 11:10 am

It’s that time of year again… the time when riders are out on their two wheeled vehicles, getting ready for the ride of a lifetime. Or lifetimes. Yours and mine.

These riders are training for the JDRF Ride to Cure Diabetes, which is held in several locations throughout the year. Today, I’d like to feature five riders, most of whom you probably know already, especially since four are also diabetes bloggers.

A rider needs to raise at least $2,000 to be allowed to join one of these rides. That’s the kind of money I can never even hope to raise, so the least I can do is support the riders who can (or who are close). I hope you’ll click on the links to their pages and help support their rides. The money they’re raising will go toward research to help make a future with less, and then hopefully no, Type 1 Diabetes. Here they are, in no particular order.
 
 
– Our first rider does not write a blog. But he has been featured on other blogs, including this one back in February 2014.

Bob Parant will be riding in Burlington, Vermont again on July 25. Bob’s a 43 year veteran of living with Type 1, and he never lets it get him down. Read his inspiring story here. And:

Support Bob’s Burlington, Vermont ride
 
 
– Moira McCarthy Stanford writes a compelling blog at Despite Diabetes, chronicling her life as the mother of a young woman living with Type 1 Diabetes. She’s been a tireless advocate for a long time, and three years ago, she participated in her first Ride to Cure Diabetes. This year, she’s participating in two rides—LaCrosse, Wisconsin on August 15, and Death Valley on October 17.

The best part for Moira will be in August, when her daughter Lauren will join her for the first time. Their stories are amazing, and you can help them both get to their destinations by supporting their rides. Here are the links:

Support Moira’s LaCrosse, Wisconsin ride
Support Moira’s Death Valley ride

Support Lauren’s LaCrosse, Wisconsin ride
 
 
– Jeff Mather is a beast of an athlete. He writes a very interesting blog at Jeff Mather’s Dispatches, and right now, he’s diligently working on training for a complete ironman triathlon: 2.3 mile swim, 110 mile bike, and a full marathon. All in the same day. All with Type 1 Diabetes along for the ride. He’ll be taking a break from his training (who takes a break from training with a 100 mile bike ride?) on July 25, when he’ll be in Burlington, Vermont for his latest JDRF ride, one of several for him in the past decade.

Support Jeff’s Burlington, Vermont ride
 
 
Jeff will probably spend part of his time in Vermont riding alongside Victoria Cumbow. Victoria writes at her self-titled blog about life with Type 1, her life as a new homeowner and resident of Nashville, Tennessee, and her absolute love of transportation on board her bicycle. Her first JDRF ride was two years ago in Death Valley, and she completed the Nashville ride a year ago. This time, she’ll be in Vermont, after already completing a sprint triathlon and a half marathon this year. Just… wow.

Support Victoria’s Burlington, Vermont ride
 
 
Last, but certainly not least, is Alecia Wesner, writer at SurfaceFine. In years past, she’s been a top fundraiser for JDRF walks in New York, where she lives and works. This year, she’s decided to give up sneakers for bike shoes, and head to Vermont for her first 100 mile ride. When I read what she writes about it, I think she may be unsure if she’ll make it. Regardless of what she says though, I think she’ll do great. And she’s bringing her sister along for the ride too!

Support Alecia’s Burlington, Vermont ride

Support Paige’s Burlington, Vermont ride
 
 
I’m not sure I know what else to say except how much I appreciate what these athletes are doing to help all of us living with Type 1 Diabetes. I hope you feel the same way, and I hope you’ll either join them or donate to help them on the ride of a lifetime. Many lifetimes. Yours and Mine.
 
 
 

By StephenS | Also posted in Athletes With Diabetes | Tagged , , , , , , , | Comments (2)

And then there’s the real world.

May 19, 2015 – 10:50 am

With the excitement over Diabetes Blog Week, I was brought right back down to earth again with two important pieces of news.

One of these stories you probably know already, and one you may not know about at all:

Asante Solutions, makers of the Snap insulin pump (I did the 30 day trial of the Snap last summer), has closed up shop. They left a message on their website Friday saying that they were no longer in business.

This comes as a shock to many, including me. I was so happy with my trial of the Snap last year that I was ready to sign up with Asante the very minute they were approved to use Novolog cartridges (their product only used cartridges filled with Humalog). It was an easy pump to use, it had all of the regular features you’d expect on a pump, plus a couple of extras including its own flashlight, and those glass-filled cartridges filled with Humalog. No more filling reservoirs doesn’t seem like that big of a deal until you actually don’t have to do it anymore. Now, with such a unique feature, Snap users can only use the pump as long as the insulin they have on hand lasts. Unless someone figures out how to refill the used cartridges, which, I don’t even want to think about right now.

It was a big deal last August when Asante announced a partnership of sorts with Dexcom to integrate the Dex mobile app into the Snap architecture. Now that is all for naught, many previously happy pump users have to go searching again, and through the insurance paperwork gauntlet again, and over 100 employees are out of a job.

If you’re a Snap user, you do have an option to transition to the Animas Vibe system. According to Asante’s going out of business announcement, “Animas is graciously offering a limited time offer to all existing Snap users to transition to the Animas Vibe pump.”

No word yet on what that offer might be. To get on your local rep’s call sheet with Animas, call 877-937-7867, extension 1562.

————————————————————————————————

Let’s talk about something better: The U.S. Food and Drug Administration is seeking our input again!

The FDA has prepared draft guidance on collecting and submitting patient preference information, so FDA can consider the benefit-risk thinking of patients using medical devices like insulin pumps and CGMs.

From the introduction of this document, in FDA’s own words:
 
 
”FDA believes that patients can and should bring their own experiences to bear in helping the Agency to evaluate the risk-benefit profile of certain devices.”
 
 
I’m all for that. Once the draft is finalized, it will become the new standard for how FDA thinks about patient preferences when reviewing the devices we use to help us live better lives.

One thing the draft guidance won’t do: It won’t change review standards for safety and effectiveness, and it won’t create extra burden on sponsors of premarket submissions of devices to FDA.

Still, pretty exciting that we’re being asked for our feedback, that our input will result in edits to existing benefit-risk guidance already in place, and that FDA plans to take it seriously during reviews.

We have until August 17 to leave comments on this guidance, and I, along with some others, are still going over this to try and better understand it (it’s 35 pages long). Hopefully, more information will be forthcoming (he said all officially-sounding).

To get a look at the draft guidance and leave a comment, CLICK HERE.

When was the last time anyone ever asked you to talk about what you like or don’t like about your devices? Asked you what you can live with, and what you can’t? Here’s your chance.

Expect to hear more about this soon.
 
 
 

By StephenS | Tagged , , , , | Comments (1)

What you do makes a difference, even if you’re not sure how.

April 6, 2015 – 11:03 am

Friday morning, I went down to my local American Red Cross office and donated blood (yes, in the USA, you can live with diabetes and donate blood—see more HERE).

The beginning of these appointments are usually pretty clinical, full of process-related steps that everyone has to go through before they actually stick a needle in your arm and do what you came for. At that point, things tend to open up a bit, because if they didn’t, you’d just be hanging out, you and the phlebotomist, with nothing to do for a while, and that would be kinda boring.

That’s when I try to get the phlebotomist to tell a funny story, or I try to tell one, and that keeps the conversation going while I squeeze on a little foam ball every three to five seconds during the “donation process”.

This time, after telling of my low adventures after the last time I donated, I asked the technician (name withheld) if she liked what she did there at the American Red Cross. I wasn’t prepared for what she said next:

“Oh yeah, I love it. I really do. When I started this job, I just thought I was collecting blood, and that was all. Then, my Mom was injured, and she needed at least a unit of whole blood every day for almost a month. One day, when I was visiting her in the hospital, I saw them hang a unit of blood and it had a sticker on it saying it came from my center. I just broke down and cried. I knew right then that I was making a difference, and I’ve never looked at my job the same way again. I love it.”

Maybe you’re raising money for a diabetes walk, hosting a D-meetup, or agitating elected officials to approve legislation so senior citizens can be covered for continuous glucose monitors under Medicare. If you do those things long enough, they can begin to get monotonous, and you may start to wonder if what you’re doing makes any difference at all.

Well, when you do, remember our technician’s story. And remember, like I’ve said before, if you make a positive impact on just one person’s life, that’s an impact that in most cases would not have been made if it weren’t for you. You make a difference, through the things mentioned above, and just by continuing to live well with diabetes. Even if we don’t get as clear an indication of our difference-making as my friend at the Red Cross.

If enough of us concentrate on helping that one person live better, healthier, happier; then eventually, those individual successes will steamroll into a greater success story than many of us could imagine. Until that day, let me say:
Thank you for making a difference.
 
 
 

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