And because everything was so well-documented by others who took more notes than me (which was actually everyone because I took zero notes and opted instead to just experience, engage with, and process it with the aid of a few tweets), I'm not going to try to do that. Instead, I'd like to tell you some of what I took away from the event.
(I want to emphasize, first, that I realize there are about 10,000 different things that need our attention when it comes to improving outcomes for people living with diabetes - but if we all pick one and work on that thing, we're moving the needle. And if more/all of us can also pick "speaking up to Congress", our united actions can have an impact on EVERYONE.)
#1: Our community needs unity and focus, now more than ever.
We, as a diabetes community, are a "sleeping giant" in advocacy. - Paul Madden #MasterLab
— Kim / Diabetes (@txtngmypancreas) July 2, 2014
We must stop judging ppl w/other types of #diabetes if we want the world 2stop judging everyone w/diabetes. #weareinthistogether #MasterLab
— Kelly / Diabetes (@diabetesalish) July 2, 2014
#2: If you're not angry, you're not paying attention.
Bummer of a slide, but this is why we need to mobilize. #MasterLab pic.twitter.com/EUxsdr75E8
— Kim / Diabetes (@txtngmypancreas) July 2, 2014
Let that anger move you to action, but let's take care to not unleash that anger on the very people whose help we need to affect change.
We need ALL people with diabetes as stakeholders AND the payers, insurance, pharma, govt, EVERYONE involved in the fight #masterlab
— Sara (@saraknic) July 2, 2014
#3: We need to get smart(er).
I've been spending more time wandering around the FDA's device regulation website lately, trying to educate myself more on how device regulation works, what things like 510k's are, and why some approvals take so much longer than others. I highly encourage you to do the same. If we want our concerns to be taken seriously by others, we need to know what we're talking about.
#4: Money speaks most loudly. Remember that as you frame your asks.
As we #advocate we have to keep in mind: "Ppl vote with their wallets if they don't have a loved one with #diabetes" #masterlab #cwdffl2014
— Heather Gabel (@HeatherGabel) July 2, 2014
To Congress: currently 60% of those on Medicare who have diabetes visit hospital > once/yr. End game: let's reduce that spending. #MasterLab
— Kim / Diabetes (@txtngmypancreas) July 2, 2014
Not covering an insulin pump for someone who needs it does not save money if they end up w/ hospital visits; complications. #MasterLab
— Kim / Diabetes (@txtngmypancreas) July 2, 2014
We need to emphasize where real costs are. Cheap, inaccurate meters don't save taxpayers $. Keeping ppl healthy; productive does. #MasterLab
— Kim / Diabetes (@txtngmypancreas) July 2, 2014
#5: We can learn a lot from advocates and activists in other health communities, especially HIV/AIDS.
Read the Back to Basics document; a roadmap for how activists changed the advocacy landscape in HIV/AIDS. Yes, it is 32 pages, and yes it is absolutely worth your time to read it.
YOU GUYS: If they could enact that kind of change with 30,000 patients, imagine what we could be doing with our 30 million.
#6: There has been no more perfect time to mobilize and act.
"5 people don't change the system, 500,000 do. You need masses and masses of people." @ManganielloHCM #CWDFFL14 #MasterLab #DOC #HCM
— Lauren Stanford (@Lauren_Stanford) July 2, 2014
@diabeteshf rocks. #diabetes parents are all potential. Time to unite to change the world. My honor to be present with these folks.
— Michael Manganiello (@ManganielloHCM) July 2, 2014
Get over to the Diabetes Action Hub, and let's get to work. Encourage your members of Congress to cosponsor the National Diabetes Clinical Care Commission Act if they haven't already - and THANK THEM if they have. (You can track the bill's progress through this site.) Send an email. Make a phone call. Compose a tweet.
I'm fired up; I'm ready; let's do this. Together.
Disclosure: Diabetes Hands Foundation, through the Diabetes Advocates program, covered the costs of my travel, conference registration, and lodging while at MasterLab and the Friends For Life conference through a scholarship I was awarded.
I believe we all have an internal call to be advocates... not just from our pancreas but from the heart. Although it can be overwhelming, I agree with you, pick one area to focus on and GO! Thx for sharing! xo
ReplyDeleteGreat way to sum things up. I like it. Lots for me to consider. I'm glad you were there and you're sharing your experience with everyone.
ReplyDeleteGreat stuff, Kim. Thanks for sharing.
ReplyDeleteI was looking for top assignment help and came across this post. I discovered that there's no diabetes cure, diabetes can be treated and controlled, and some people may go into remission. To manage diabetes effectively, you need to do the following: Manage your blood sugar levels.
ReplyDelete