Category Archives: Advocacy

We have a winner!

How many of you remember this post from a few weeks ago?

I have received multiple responses to this, and I am happy to announce that we have a winner.

Because a second, generous donor (who wishes to remain anonymous) stepped forward, we were able, together, to provide registration for the Diabetes UnConference and two nights’ stay at the Embassy Suites Alexandria, the host hotel for this gathering.

Like I said in the original post, I realize this doesn’t make everything suddenly more equal and inclusive at diabetes events throughout America. Especially in light of the terrorism that took place in one of my favorite places in the world, Charlottesville, Virginia last weekend, this seems like a rather meek gesture.

Sometimes we can’t change the whole world… but we can influence our little part of it.

I am thrilled about sending our winner on this trip, and they are excited about attending.

I’m not sharing the identity of the winner. I thought about it. But I felt that whether I did or I didn’t reveal, I could be open to criticism. By not revealing, someone could say that I’m trying to make it about me, or hide the fact that I did this. That’s a ridiculous argument, but someone could say that. If I did tell everyone who it is, I risk looking like I’m showing them off for my own benefit, which, frankly, is not what this scholarship offer or the Diabetes UnConference is about in any way.

So our scholarship winner is free to share that they are the scholarship winner, should they want to. But again, in the spirit of inclusion, I want them first and foremost to be thought of as a welcomed attendee… as a valued member of our tribe… as a respected contributor to our community… as a person.

For now, there is still time to register for the Diabetes UnConference Alexandria (co-located with Diabetes Sisters’ Weekend for Women conference), happening October 13-15. Room reservations are filling up fast, so if you want in, your time is limited.

I can truly say that it has often been imitated, but never duplicated. It is that special and unique. Come to our gathering and share. Experience. Explore. Not about diabetes life, but about life with diabetes. No structure. No judgement. Find your tribe. Love them hard.

See you in October!

Disclosure: I will be part of the team of facilitators at the Diabetes UnConference Alexandria October 13-15, 2017. All opinions are my own.

Just one step.

Update: Another donor has graciously stepped forward, and now I can say that we can provide registration for the Diabetes UnConference and Friday and Saturday night at the destination hotel for the event. Yay!
I will pick a winner on August 14.

I read with great interest this well-written article from Chelcie Rice that was featured over at Insulin Nation recently. Christopher Snider and his sister Jeanette talked about the post and the subject on their podcast, Mark All That Apply. I think both are worthy of attention, and for what it’s worth, both have me thinking about this subject again.

As I mentioned to Chelcie after he linked to his story on Facebook, I think about the lack of diversity every time I attend a diabetes event. It’s not that there is a lack of color at events; often, there is no color at all. Even though we all know that people of color are disproportionately affected by diabetes. It’s something that’s entirely different from the ethnic makeup in every other part of my life.

But hey, I’m an advocate… but wait, I can’t change my ethnicity… so what should I really do if no one shows up who doesn’t look like me? I’m not sure exactly what I should do. But I know what I can do.

I will promise to provide one scholarship to this October’s Diabetes UnConference to a person of color. I will promise to pay for registration to this event in Alexandria, Virginia.

This will only include the price of registration. I’m not rich enough to include travel, so that will not be included. I can’t guarantee much else either. But hopefully, this is something, and hopefully it will get someone to consider applying for the scholarship who up to now has been on the fence about attending a diabetes event.

Why am I doing this? Because I’m altruistic and wonderful? It’s a little more complex than that.

The truth is, every single time I’m at a conference or research summit, I notice the lack of diversity in the room, and I think about it. This past Friday’s Outcomes Beyond A1c meeting (more on that later in the week) was an exception, but most of the diversity in the room came from outside the USA. To this point, I haven’t done anything about what I’ve seen.

I’m also well aware that this won’t exactly solve the issue of diabetes meetings, conferences, etc. that are not as diverse as they could be. I mean, it’s not like people of color have been excluded from the events I’ve attended. And where there has been diversity, it appears to me that people have been welcoming.

But by and large, diabetes conferences and other events still look different from the way the rest of my world looks. And if doing this one, small thing helps to begin to change that, if it begins to help communities that have been underrepresented, I’m comfortable with my decision.

There are powerful leaders among us, and it would be ludicrous to think that they are all white. As I’m fond of saying, we need all the advocates we can get. Frankly, I don’t care what they look like. And while I can’t speak for them, I suspect that the white friends I have in the diabetes community feel the same way.

Likewise, there are many in need of support and empowerment in the diabetes community, and I have to believe the needs I see among those who look like me are at least matched by those who do not look like me. And if they’re in need, frankly, I don’t care what they look like.

I haven’t thought very hard about rules for this little effort. But for starters, here’s what I’m looking for:

– You need to be a person of color (loosely defined; in other words, you don’t look like me)

– Since this is for the Diabetes UnConference, you must be an adult living with diabetes, or an adult close to someone living with diabetes of any type

– You need to want to use your opportunity to help others… paying it forward is part of the plan

We’ll make up the rest as we go along.

If you’re interested, send me an e-mail using the E-Mail Stephen link in the upper left part of this page. On August 14, I will pick a winner from among those responding. Be ready for follow-up questions. I don’t want to make it difficult for you, but I do want to make sure you can make it, and I want to make sure this event is a good fit for you.

One more ask: Please share this with others you know in the diabetes community. I would be thrilled to have to choose from a number of applicants.

Finally, this is not all there is. If we think about it, probably all of us, no matter what we look like, can figure out a way to help make diabetes events look more like the rest of the communities we live in. I’m hoping I can provide scholarships in the future. Not sure if I can, but that’s the goal. But that’s not all I can do. Whether it’s through communicating with additional diabetes groups, or through a donation, or through continuing to be a welcoming presence wherever we are, I know you and I can help make diversity a part of the diabetes advocacy we all believe in.

We all want to reduce the burden of diabetes on everyone living with this disease. This is just one small step. A symbolic step perhaps, but it’s what I can do.
Now, let me ask: What can you do?

So many questions. Damn few answers.

They represent the residents of their states in the United States Senate.

– They must be at least 30 years old.

– They must be a U.S. citizen for at least 9 years.

– They must be an inhabitant of the state they represent.

As a citizen of my country, I have a right to expect that members of the United States Senate are serving the people they represent. All of the people they represent, whether those people voted for them or not. I mean, how many of the corporations spending money to help them get elected are actually domiciled in their states, right?

After a lot of closed door scheming, the Senate majority leader decided it would finally be okay to release the onerous upward-wealth-distribution-disguised-as-healthcare legislation he intends to have a vote on this week. On the surface, it would seem that the party in power might have trouble getting the necessary 51 votes to pass their death sentence to Americans. They only have a 52 to 48 seat majority, plus the Vice President available to break any ties, if necessary. That means if they have 3 defectors on this legislation, they won’t be able to pass it.

But… obviously, stranger things have happened in politics, especially in the past year or so. The majority is not taking any chances. They are working hard, maybe harder than they worked on the legislation that they’re trying to ram down people’s throats, to change the minds of the five or so GOP senators who are Nos at this point.

Well, I don’t have to be the second coming of Alexander Hamilton to know that this is not how American democracy is supposed to work. I don’t have to be the second coming of Edward R. Murrow to know that American citizens have the right to know what their elected officials are up to, and what they stand to gain from turning their backs on American values. I don’t have to be the second coming of Rev. Martin Luther King Jr. to see that not only partisanship, but racism is alive and well in the U.S. Senate.

I have a lot of questions. Why do they think that saving money should be the only criteria for what they’re doing? If your child is sick, aren’t you going to do whatever you can to help them feel better, regardless of the cost? Why doesn’t congress feel this way? Why is there a wealth distribution toward the already excessively rich tied to health care?

Additional questions include: What are they so afraid of? Why must it be rushed through to a vote? Why do these Republican senators hate the Americans they represent so much?

To be honest, I think they hate the previous president more than they hate me. They really hate the previous president. You and me, they couldn’t care less about.

Why else would they want to take away pre-existing condition protections? Why would they want to subject hospitals, care facilities, and Americans like you and me to potential bankruptcies? Why would they want to kick veterans off of Medicaid?

We’re left with a lot of questions, and damn few answers.

But I know a way to silence those questions. That would be by stopping this hateful, un-American legislation. If these senators could just set aside their hatred, and in some cases, their racism toward the previous president, we would be left with only one question:

How do we make health care better?

That’s a goal that every American would be happy to support. Including this American.

DOWNLOAD THE DPAC APP on your Apple or Android device –
Use it to contact your elected officials and encourage them to vote No on BCRA.
Your voice matters… and you can speak it to your elected officials in less than one minute using the DPAC App.

“I’d rather be right than…”

There are countless quotes out there of famous people using the phrase, “I’d rather be right than…”. I thought a lot about those this week as I’ve watched Congress consider healthcare legislation again.

”I’d rather be right than be president”—U.S. Representative Henry Clay, 1838

Only there isn’t anything right about it.

The latest twist in the tale involves the MacArthur amendment, written by Republican House Representative Tom MacArthur of New Jersey, which relieves states from complying with protections for anyone living with a pre-existing condition. Oh, and those essential benefits that all insurers must provide through the Affordable Care Act? Under the amendment, states will get to decide what those essential benefits are. If there will be any at all.

Then there are the protections that state that everyone in the Obamacare exchanges must be charged the same for insurance, whether they’re male or female, living with a pre-existing condition or not. The MacArthur amendment provides an avenue for states to request a limited waiver in these cases, which would allow them to charge less for people not living with a pre-existing condition.

That means people who do live with pre-existing conditions could and would get cordoned off into high-risk pools that provide less coverage, but charge more for premiums. If this passes, someone my age, living with diabetes, could be looking at spending something north of $20,000 per year for health insurance.

But that’s okay, Republicans say, because they’re throwing an extra $8 billion into a fund to help those with pre-existing conditions. By my math, that’s a little more than $47.00 for everyone living with a pre-existing condition. Using our $20,000 per year premium, that’s less than 3 percent of one month’s payment.

“When history looks back, I’d rather be judged as solving problems and being correct, rather than being popular”—President George W. Bush, 2006

Once again, we are literally fighting for our very lives.

Perform a Google search for politics and morality, and you’ll get a lengthy list of online articles telling you that either morals do or don’t belong in politics. Regardless of how you feel about morals and politics, in this instance, morality is sitting firmly on the sidelines. It’s not getting invited to this dance. Don’t forget, Congress tried to exempt themselves and their staff from this legislation.

”I’d rather be right than consistent”—Winston Churchill, 1956

Actually, I think this situation is a little backward. The truth is, Congress would rather kill Obamacare than be right. They would rather let Americans die than be right.

There’s very little time. The House expects to vote on all this today. As of this writing, just 22 or 23 more No votes were needed to kill this cruel legislation.
THIS PAGE has every representative listed, links to their websites, and most importantly, their phone numbers.

Want to make it easier than that?
CLICK HERE to download the DPAC app. I’ve mentioned before how Diabetes Patient Advocacy Coalition makes it so easy to contact elected officials. Now, with the DPAC app, you can get timely alerts, take action without going to a website, and insert your own diabetes voice into the conversation faster and easier than ever before.

Let Congress know that you’re not going down without a fight. And if they try again, you’ll fight again. Our right to equitable, accessible, affordable care hangs in the balance. American lives are at stake.

“I don’t know what I would have done without you guys”

I agreed to do something on Saturday. I set off at around 9:00 a.m. and slogged my way across town in the cold mist, which later turned into a cold April rain. I went to help a friend clear the basement in her parent’s home.

This is not what I wanted to be doing Saturday. It was not where I wanted to be.

For decades, my friend’s parents have spent part of their year in Baltimore, and part of their year in Cairo. Her father’s Egyptian, her mother American. A little over a month ago, after a long illness, her father passed away in his home city. Her mother is still there, tying up loose ends until she is able to return to the States.

My friend has two sisters, but they don’t live here anymore, and that left my friend as the one left to try and make sense of decades of paper, old electronics, window shades, and other nic-nacs on shelves. And shelves. There was a lot of stuff in that basement. A lot to deal with.

There was a 30 foot long dumpster in the driveway, and in a little over 2 1/2 hours, we filled it. But it wasn’t easy. There was a lot of stuff do deal with. A lot of decisions had to be made.

The easy part was deciding what to throw out. But… it was decided that some of what we found should be donated. Some of the items we found actually had some value, and were kept. There were things that needed to be decided on by her mother later. They would stay in the basement.

I had my own issues during all this. In addition to helping with a difficult task, I had to take care of my own diabetes, making sure to fuel up at times to avoid being useless due to a low blood glucose level.

As we worked through the mass of material before us, from time to time, I could see that the process of it all was affecting my friend in a profound way. It wasn’t just stuff to her… it was decades of memories. Occasionally, she would retreat and her boyfriend needed to take over the duties of deciding what stayed and what went.

This process frustrated some of her friends who were there to help. They had trouble understanding why it took so much time to decide on a strategy, on what to do with something they found. Why couldn’t we just clear the basement? Why weren’t we doing this faster?

But it needed to happen this way. If it didn’t, we risked frustrating my friend, causing her to pull back entirely, sending us away and forcing us to try on another day. This was not what she wanted to be doing Saturday either. It was not where she wanted to be.

So carefully, deliberately, we started to chip away at the pile of things before us. Children’s toys. Scrap books. Old televisions. Boxes and boxes of books. A lifetime of memories. There’s no guide book or training manual on how to deal with this.

When it was over, my friend and her boyfriend were extremely grateful. I heard things like “I owe you big time”, and “You guys are rock stars”. Those sentiments were as sincere as any I have experienced.

Sifting through decades of memories, finding what you can work with and what you can’t, and emerging on the other side of it all with a feeling that you’re making real progress, is a lot more complex than just throwing a bunch of shit in a dumpster.

In the end, I know I was where I needed to be on Saturday. The real breakthrough was not in how I helped, but in what I learned.

As I stood on the edge of a nearly overflowing dumpster, I tried to encourage my friend, telling her that this was a sign of real progress. She said, “Have you looked in the garage yet?”.

There’s likely another Saturday there in my future. Progress has been made, and much more needs to be accomplished. But my friend understood that your friends mean so much more when they’re there for you to help with the difficult tasks. As her friend, it’s so worth it to hear “I don’t know what I would have done without you guys”.

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