Monthly Archives: January 2018

Got a phone? You’re an advocate.

You know, 2017 was quite a year in health care in the USA. So, what’s happening in health care in 2018?

Pretty much the same things.

Any successes that were achieved in terms of awareness on drug pricing, or access to care, or anything else have been met with continued explanations and excuses, but not any real progress. In all fairness, the rollout of Eli Lilly’s Basaglar and Novo Nordisk’s Fiasp have been positive developments.

But they won’t mean much if few can afford those, or if insurance companies continue to take away choice from patients by only allowing one brand of drug to be on a plan’s formulary, while forcing patients on the non-formulary brands to use something that may not work best for them (a practice known as non-medical switching).

In 2017, successes that came from helping to defeat the forces trying to rip apart PPACA (Obamacare) were hurt by repeal of the individual mandate, the provision in PPACA that reduced overall costs by requiring everyone to have coverage. That happened in the “tax reform” package passed and signed into law last month.

There are other questions, of course… what’s going to happen with the Special Diabetes Program, used to help fund research? What about CHIP, the Children’s Health Insurance Program, which covers many disadvantaged kids living with diabetes? It appears that the furor over partisan politics has left many previously no-brainer health care initiatives in limbo.

Buckle up, kids. It’s going to be another crazy year of fighting to hold on to things that we’ve already fought hard for many times. As a result of congress and the president blowing a trillion and a half dollar hole in the federal budget so they can help insurers and drug makers (among others who were already making more money than ever before), every single piece of spending is in danger of being cut to help make up the voluntary deficit they created.

Does this make you mad? It makes me mad. What do we do now?

First of all, we download the DPAC app. Diabetes Patient Advocacy Coalition will keep you updated on hot-button topics, and most of all, give you easy, quick ways to add your voice to the conversation. And wow, do we need your voice added to the conversation.

In addition, the American Diabetes Association and JDRF are doing a super job of advocating on our behalf, and they could use your support. They are also employing easy, quick tactics to help people living with and affected by diabetes join the advocacy effort from wherever they live. Get on their advocacy mailing lists and start communicating.

And don’t forget, you can always use your phone to actually speak with a person too. Contact your congressperson, senator, or even your president and let them know the score. Let them know you won’t be going away.

We don’t have to go all the way to Washington to share our personal stories. We don’t have to schedule time with a member of congress, hoping to get a chance to speak. We can speak now, loudly, and in unison, and easier than ever before.

If you have a phone, you are an advocate.

Living with a chronic condition is like : Laundry.

With a rare extra day off and nothing on my schedule, in between watching hockey and football on New Year’s Day, I worked to catch up on laundry.

And there, somewhere in between the Sabres and Rangers, and LSU – Notre Dame, it hit me: doing laundry is a lot like living with diabetes.

It’s not enough to just throw everything into the washer. You have to add soap, and fabric softener. Maybe bleach. Do you have soap, fabric softener? What about bleach? It’s not likely you have an abundance of all three of those in your laundry room at the same time. You might even have to pretreat an item or two before you get started. Every load is different. You can’t count on anything.

You’ll have to eventually shift each load from the washer to the dryer, or possibly hang up the more delicate fabrics. Do you use fabric softener sheets? Do you have fabric softener sheets? Do you need to make a trip to the grocery store?

Now you’re probably thinking you’re through with your laundry. Not likely. Because you’re going to have to fold or hang all of those clean clothes. All of them. The truth is, this is the part I hate the most. It never feels like I’m going to get to the end of what’s in the dryer.

And still, you’re not finished yet. You have to put it all away… unless you just want to select what you’re going to wear from your laundry basket. Personally, I wouldn’t think less of you if you did.

Just like the laundry, living with a chronic condition like diabetes means that I have to keep track of medications and supplies, at least one of which seems to need to be refilled every couple of weeks. I have to treat each circumstance differently. Whether it’s exercise, diet, stress, or something else, no two days are the same.

And here’s where living with a chronic condition is different from laundry, or anything else:

You’re never finished.

If my dirty laundry piles up and I just don’t have the time or the desire to get started on it, if I want, I can try to get away with wearing the same shirt or the same pair of pants twice. But even though I have days where I’d like to just kick back and ignore my diabetes, that’s just not possible.

Every situation, every piece of food I put in my mouth, every workout, every single day brings another factor I have to deal with. I can send my clothes out to the dry cleaner if I want, but I can’t pass off my diabetes to anyone else.

If you want to get a taste of what it’s like to live with a chronic condition, grab your dirty laundry and get going. If you really want to know what it’s like to live with a chronic condition, imagine doing laundry all day, every day, for the rest of your life.

Put these conferences on your calendar… now!

Happy New Year! Since we’ve reached the start of a new year, you might be wondering if there are events in your area that speak to diabetes, or to health care in general in 2018. If you live in my part of the world, the answer is Yes.

This is by no means a comprehensive diabetes conference schedule like the ones Christel Marchand Aprigliano used to write up. But if you live here in the USA, there are a few things you might want to mark your calendar for. Hopefully, these will get you thinking about how to further connect with the community this year:
 
 
Healthcare Costs Innovation Summit. This is an HCI-DC event, sponsored by West Health (HCI stands for Health Care Innovation). While this is not diabetes specific, I can relate that I went to one of these a couple of years ago and learned a lot.

This year’s one day event centers around what we, as a group, on this one day, can come up with in terms of innovations and policy fixes that might help slow down or reverse the rising cost of health care in America. Timely, yes?

Andy Slavitt, former acting commissioner for the Centers for Medicare and Medicaid Services, and a font of information on health care in America (seriously, follow him on Twitter) will be speaking, among others.

The best news is that the summit is free. The second best news is that it will be live and live streamed, so if you can’t get to Washington in February, you can still look in.

Healthcare Costs Innovation Summit
Wednesday, February 21, 2018 9:00 a.m. to 3:00 p.m.
Amphitheater at Ronald Reagan Building and International Trade Center
1300 Pennsylvania Avenue NW, Washington, D.C.
CLICK HERE to attend or sign up for the live stream.

————————————————————————————————————-

JDRF TypeOneNation Summit. The first of the JDRF TypeOneNation Summits will be taking place on January 20, 2018 (Middle Tennessee and North Florida). The summit in my state will be happening as usual on the first Saturday in March (March 3) in Bethesda, Maryland.

These are great gatherings that give those living with and caring for people with Type 1 diabetes the opportunity to learn the latest about technology and drug innovations, and interact with others from the tribe.

If you haven’t been to a diabetes event before, this is a great place to start.

CLICK HERE to find out more about JDRF TypeOneNation Summits nationwide.

JDRF Chesapeake & Potomac Chapter TypeOneNation Summit
Saturday, March 3, 2018 9:00 a.m. to 4:00 p.m.
Bethesda North Marriott Hotel & Conference Center
5701 Marinelli Road, Bethesda, Maryland
CLICK HERE for more information. Registration opens, probably, some time this week.

————————————————————————————————————-

Friends for Life events. Friends for Life will be coming back to Falls Church, Virginia in October of 2018. I’ll be looking forward to seeing old and new friends and learning more about a variety of topics with regard to cost, burnout, managing diet and exercise, and seeking support.

There are usually tracks for kids, teens, and adults at this gathering. If you can’t make the big FFL meetup in Florida in July, October in Northern Virginia is a very nice second option. If you live in the west, Anaheim in May is a very nice second option. If you live in the UK, Perthshire, Scotland in October is a super option. If you live near Toronto or in Niagra Falls, or anywhere else in Canada, Niagra Falls in November works pretty well too.

Friends for Life Falls Church
October 19 – 21, 2018
The Fairview Park Marriott
Falls Church, Virginia
CLICK HERE for more information on FFL Falls Church and the other 2018 Friends for Life events in Orlando, Anaheim, Scotland, and Niagra Falls, Ontario.
 
 
2018 is right around the corner. Get out your calendars and start planning! And if you have any conferences or meetups happening where you are in 2018, please let everyone know in the comments section below.

Note: the original version of this post listed the Anaheim Friends for Life event in April; the conference is actually May 4-6, 2018. Totally my fault.

%d bloggers like this: