Category Archives: Advocacy

March for Health

I’m one of the lucky people in this world who has a Monday through Friday job. Every weekend off. Nevertheless, ten, fifteen years ago, I spent many Saturdays getting up early, getting to the office, and working for four to six (or even eight) hours. I was convinced that there were many things to do, and the quiet Saturday surroundings would help me tackle those without the distractions of the phone or people coming to my desk all the time. It was a lot of extra work for exactly zero reward. It’s a long story about how I got here, but I’m happy to say that I don’t do that anymore.

Instead, this past Saturday, I got up early, drove to the Washington, D.C. suburbs, and caught the Metro into the District. I am even happier to say that this effort was more than worth it.

Photo courtesy of Dirk Gassen


Saturday, April 1st marked zero hour for March for Health, the culmination of a nationwide effort to rally for health care as a human right. In cities large and small, people gathered, signs in hand, purpose in mind, to share their concern that the discussion on health care needs to result in affordable, accessible, equitable care for everyone.

I was a very small part of the D.C. march, which made its way to Upper Senate Park on the grounds of the U.S. Capitol a little after 12:30 Saturday afternoon. I was fortunate enough to speak for about six and a half minutes, trying to help the audience focus on the fact that there are many of us out there living with chronic conditions, and collectively, we are making a difference. The text of my speech is at the bottom of this post.

But first, I want to congratulate march organizers, two of whom were interviewed here last week on the podcast. Many of the march leaders had never put anything like this together before. Wherever they were, they worked extremely hard to gather volunteers, keep everyone informed about places and times, get parade permits, do outreach, and solicit media coverage. When you consider where this movement started in late January, their accomplishments have been astounding. I couldn’t be prouder to have been a part of what they created.

One more thing: I fear we will need more marches, more e-mails, more people speaking about the importance of getting the insurance, care, drugs, therapy, and the rest that all of us living in my country deserve. In that respect, March for Health is just a beginning, but an important beginning, and a clear indication that there are many who are willing to stand up for what’s important to everyone.

Now, the speech. I’m including a couple of extra photos of my own after. If you read this space regularly, you might notice that I plagiarized myself a couple of times here. I started out talking about my diabetes, but tried to bring it around to the fact that everyone lives with or loves someone who lives with a chronic condition like mine. As a unified group, we can affect policy, and even elections. Here we go:

Hello… my name is Stephen Shaul.

I’ve lived with Type 1 diabetes for 26 years. My daily life is an endless stream of glucose checks, math calculations, and insulin injections. I wear an insulin pump and a continuous glucose monitor. I see an endocrinologist, who devises strategies to help me live the best life I can with this disease.

But you know, that doesn’t make me unique in this country. More than 29 million people in the United States live with diabetes. Heck, as chronic conditions go, I’m not even unique in my own family. My spouse lives with A-Fib, my mother lives with COPD, my father is a cancer survivor. One of my brothers in Ohio has five children, one of which lives with Asperger’s Syndrome. In fact, three of his kids have tested somewhere on the autism spectrum.

And that’s the thing. You know, I’ll bet that if we could somehow get all of America into one room and ask the question, do you or a loved one live with what some would call a “pre-existing condition”, just about every hand in the room would go up.

That’s why there was so much resistance to the American Health Care Act. People from every part of the health care spectrum weighed in to say that regardless of their political leanings, they and their loved ones come first. With one loud voice they stood up and said, when it comes to what’s really important, people are always more important than profit.

All over this country, Republicans and Democrats have children living with diabetes. Liberals and Conservatives have spouses and partners who have to manage their rheumatoid arthritis every single day. In every corner of this land, card-carrying members of the GOP, and the party of the New Deal, and Independents too, have parents who need and deserve access to things like flu shots and mammograms.

So when the opposition began to build against AHCA, it wasn’t all based on opposition to repeal and replace. It wasn’t all about policy and tax credits.

Instead, it was opposition to taking away protections for our loved ones, shoving them into high-risk pools that would cover very little, if any, of the drugs, treatment and technology they are afforded today.

It was opposition from people who already pay thousands of dollars per year to stay alive, saying that they shouldn’t have to pay thousands more for premiums, then pay even more on top of that because those premiums wouldn’t cover as much as they’re being covered for today.

It was opposition to, as our Nashville march organizer told me this week, being one lab test result away from being deemed uninsurable.

When the people most dear to you are in danger of losing their protections of access to treatment, insurance, drugs, and therapy, we all understand: the stakes are life and death. What’s been missing from lawmakers is the acknowledgement that those who do want to repeal and replace, and those who don’t want to repeal and replace, all have children, spouses, partners, and parents who need and deserve care. We all have the same needs, and the number one need of all is to keep ourselves and our loved ones alive. The number two need is to stay as healthy as possible without going broke.

So you know what? We’re not unique! There are millions upon millions upon millions of us in this country. Together, we made the phone calls, we sent the e-mails, we attended Congressional town hall meetings. And our efforts worked. Our elected officials responded. They pulled the legislation.

And if we have to, we will do it again!

Now, we’re hearing that the people who work in this building behind me are considering another try at health care reform. As they do, we need to be sure they understand that if they’re talking about doing something different with health care in the USA, the end result MUST BE BETTER for all Americans than the law it seeks to replace. All Americans, including and especially the millions most affected by changes to existing law.

No, we’re not unique… but we’re powerful. We can and we have influenced Congress. We can sway elections.

So… when Congress starts talking about “repeal and replace” again, make sure they know:

It cannot be repeal and deny.

It cannot be repeal and bankrupt.

It cannot be repeal and left for dead.

Last time I checked, people weren’t dying in the streets from Obamacare. Hospitals aren’t going bankrupt due to the Affordable Care Act. As the debate on health care goes on, let’s remember those most dear to us, who might also be living with a chronic condition. For me, that’s my wife. My parents. My nieces and nephews. My friends living with chronic conditions. If their needs aren’t met, my needs aren’t met.

Let’s face it: We’re now talking about cars that can drive themselves and using drones to deliver packages to our homes. Meanwhile, lawmakers have relegated healthcare to a yes you can, no you can’t series of decisions like a political football. Friends, that’s 20th Century thinking in a 21st Century world. And it’s a 19th Century way of thinking when it comes to doing what is best for the people living with chronic conditions like mine.

Let’s remind those who still don’t get it that any new healthcare legislation needs to provide more care. It needs to cost less. It needs to help save more lives. As the debate on health care continues, let’s keep the focus right where it belongs: on American lives.

Thank you.

The beginning of the D.C. March for Health, Lincoln Park, Capitol Hill


Marchers chant their way down East Capitol St NE toward the U.S. Capitol


Nobody ever died from Obamacare.

This week, Republicans in the House of Representatives rolled out what they had been trying to hide from the public for about a week: the “repeal and replace” legislation for healthcare.

Known as The American Health Care Act, the bill covers many things. In time-honored Republican tradition, it wants to eliminate the right to coverage in exchange for tax breaks. And that’s just the beginning.

What’s surprising to me though, is how much resistance to this legislation has materialized from nearly everywhere, including from conservatives. And I’m left wondering: why is the response to this different?

“We want a system that is affordable and accessible.”
Tom Price, Health and Human Services Secretary

I could write 10,000 words on how this bill would make health care unaffordable and inaccessible for millions who depend on Obamacare plans right now. Not to mention the incredible balloon to the federal deficit this bill would undoubtedly unleash.

But that’s not all. The bill also wants to reduce Medicaid expansion, putting a lot of the burden on individual states, which creates an atmosphere where health care could be more affordable in one state and less affordable across the state line; and mostly, on the people most likely to be hurt by that—the poor. These are not the people many decry as just taking a handout while providing nothing in return. Trust me: you don’t want to be a Medicaid recipient. But it’s better than nothing.

The bill also defunds Planned Parenthood. Now, you may not like Planned Parenthood, and I won’t try to change your mind on that, but if you want to put them out of business, you’ll have to find another way for women to get cancer screenings. Or women will die who otherwise don’t have to.

That’s a lot of what I think is missing from this debate. All I’m hearing is political spin about choice and tax incentives. Nobody seems to be talking about the people who will be bankrupted or killed as a result of the havoc that this legislation would enact. I’m not stretching to say that. Even Republican lawmakers admit that it will cost more.

“So rather than getting that new iPhone that they just love and want to go spend hundreds of dollars on that, maybe they should invest in their own health care. They’ve got to make those decisions themselves.”
Rep. Jason Chaffetz, R-Utah

Well, representative Chaffetz, I do not have an iPhone. I do know many people who have iPhones because it’s the only mobile platform that will allow them to see real time blood glucose data on their children living with diabetes. You know, the disease they did not “make a choice” to get. Many of these parents are Republican, many are not. Their children still have diabetes.

He’s tried to walk that statement back after some initial uproar over its insensitivity, but even the walkback didn’t sound like much of a mea culpa. Overall, it still sounds like he’s repeating the stupid sound bites he’s been fed by his friends over drinks at the country club.

“If we did nothing, the law would collapse and leave everybody without affordable healthcare. We are doing an act of mercy by repealing this law and replacing it with patient-centered healthcare reforms.”
Rep. Paul Ryan, R-Wisconsin, Speaker of the House of Representatives

Failing after seven years. Seven. Not six months. Not a year or two. Seven. Years.

I know he and his Republican colleagues in congress have been trying to kill this law for seven years, and with all the power in the U.S. government at their disposal, they still can’t get it done. Why?

People and patients, conservative and liberal, can see right through the arguments. Not because of their political leanings. What’s missing here is the acknowledgement that both Republicans and Democrats have children, spouses, and parents who need and deserve care. They all have the same needs, and the number one need of all is to keep their loved ones alive. The number two priority is to keep them as healthy as possible without going broke.

People don’t need detailed actuarial analysis. They don’t need political spin. They need to answer three questions: Will I keep my coverage? Will it at least cover the same things that are covered today? Will it cost more?

So far, the answers to those three questions is Maybe, No, and Yes.

People understand that Obamacare isn’t the best thing ever. Many would like to chuck Obamacare into the river and start over with something new. Many are eager for that. But… they’re going to take care of themselves and their loved ones first. The reality is, if you can’t at least give people the same access to care without it costing thousands of dollars more, they’d rather have the devil they do know as opposed to the devil they don’t.

Bottom line: the proposed legislation needs to be at least as good as the legislation it wants to eliminate. Otherwise, if you’re one of the 20 million with coverage through Obamacare, or one of the tens of millions with a loved one being helped through Obamacare, why would you want a change? Don’t forget, there are Republican as well as Democrat voters in this group. By and large, the message I’m hearing from both sides is:

It’s not Repeal and Replace. It’s Repeal and Deny.

It’s not Repeal and Replace. It’s Repeal and Bankrupt.

It’s not Repeal and Replace. It’s Repeal and Kill.

No one ever died from Obamacare. As the debate on health care rages, let’s keep the focus right where it belongs. On American Lives.

The Republican formula, in three easy steps.

**Author’s note: I do not have a political affiliation. Over the course of nearly 37 years, I have voted for Democrats and Republicans, and others too. I am fiercely independent politically, and I plan to stay that way for the rest of my days.

January has never seemed colder.

On inauguration day, the United States Congress and the incoming President will set in motion the repeal of the Patient Protection and Affordable Care Act. Despite what some who support the incoming president believe, this is also known as Obamacare. Republicans in Congress and the republican President are taking away the established right to health care for 350 million American citizens.

That’s right… this is about more than the 29 million people living with diabetes, or the 14.5 million cancer survivors, or the 30 to 50 percent of men over 40 living with erectile dysfunction in the USA.

They’re taking away the right to care, treatment, and drugs for every single one of us, whether we’re currently living with a disease, condition, illness, or nothing at all. We will once again be on our own.

They’re doing this for a number of reasons, but mostly, because they want to take away my right to health care, and because they can. They can because they have a majority in the House of Representatives, and through the budget reconciliation process, they only need 50 votes in the Senate to repeal the law.

And that replacement that everyone kept harping on under the guise of “repeal and replace”? The idea was never to “repeal and replace immediately”, or to “repeal and replace with something better”. There’s a formula in place here, and this is what it looks like:

1. Repeal as soon as possible. Republicans can pretty much check that off their list.

2. Draft a replacement. Any replacement. It doesn’t matter what it is. It doesn’t matter that it’s not better (ACA is not perfect by any stretch, but the ideas being bandied about by congressional Republicans are sinister). It can be written on the back of a cocktail napkin for all they care. They just need to draft a replacement, and introduce it at the last minute before the vote. Here’s why… listen closely:

3. Vote on the replacement. This vote would pass the House easily, with a simple majority. But in the Senate, the replacement would require 60 votes. The Republicans don’t have 60 seats in the Senate, so that’s never going to happen. Here’s the entire point I’m making– pay attention: When Democrats won’t vote for the “replacement”, Republicans will have everything they need to then go to their press conferences and Meet the Press and Face the Nation and say, “we have a replacement like we promised, but Democrats won’t vote for it, so Democrats are holding up health care for everyone”.

I’m not positive, but I’m pretty sure that’s how the Republican formula will work. They’ve been wanting to repeal this law for over six years now. Do you think they wouldn’t have a plan in place to try to make themselves look benevolent while making their opposition look opportunistic? There’s only one little thing though…

Republicans are taking away the right to health care for 350 million Americans. That right already existed. It was already tested in the courts. It was already the law of the land. There was no need to repeal it without replacing it with something better, or without rewriting the existing law. Republicans own that. For their part, Democrats are even willing to discuss changes to make Obamacare better, as long as all Americans retain their right to coverage in the process.

But, for whatever reason, Republicans aren’t interested in that. They, and the incoming president, would rather see all Americans without a right to health care than see Americans spend one more day with guaranteed coverage under ACA.

Well, that’s how I see things shaping up over the next few weeks. I hope I’m wrong. I hope the final outcome will be better than anyone had imagined. Right now, I’m still coming to grips with the idea that Republican lawmakers hate us, all of us, all 350 million of us, and are working as we speak to take away our right to heath care forever, guaranteeing that in the aftermath of their plan, some Americans will, in fact, die.

In that respect, Republicans are right… on the streets of D.C., life is cheap. They’re on their way to guaranteeing it.

My Diabetes Platform for the election.

Welcome to Diabetes Awareness Month. And since this is also a big election year (and we generally elect candidates and vote on issues in November), let’s merge those two together for the sake of this post.

Oh yeah, I’m going there. For the sake of myself and my friends with diabetes, I’m going there.

I fully recognize that there is more than one way to get things done, and I’ve seen countless examples over the past eight years that there is more than one way to not get things done. Rather than going down party lines, I thought I would lay out my own framework for a more perfect diabetes union. My own policy statement that outlines issues I stand for during this very important election cycle. Here are my thoughts:
 
 
– Any talk of a rework or repeal of the Patient Protection and Affordable Care Act must include a guarantee of coverage for every Amercian, regardless of what they’re living with today and in the future. And an undertaking like this must not take place until all sides can agree that this provision stays in place. If you don’t support that, I won’t even think about voting for you, and should you get elected, I might even go to Washington to protest your stance. Loudly.
Note: they don’t want to “repeal and replace”… they want to take away your right to coverage, and deny it forever. If you’re okay with that, and you’re okay with any coverage you might be lucky enough to get costing more anyway (because they never said it would ever cost less), then go ahead and vote for your candidate(s).

– The Competitive Bidding program set up by the Center for Medicare and Medicaid Services (CMS) must end. As soon as possible. I have friends being harmed by this program today, I will have friends being harmed by this program in the near future, and if it continues, I’m a little over ten years from being harmed by this program myself. People who really know, know this program is wasteful. Make them stop it. Now.

– The cost of drugs and devices necessary to keep us alive is too much. Consider the fact that having to pay extra just for the right to stay alive is asking far too much. Having what is considered to be good coverage that costs me thousands of dollars out of pocket every year is a ridiculous way to say “good coverage”. The cost of staying alive should be significantly reduced. Make it happen. My friends and I will help show you how.

– Patients require a seat at the table. Notice I didn’t say “want”… I said require a seat at the table. When our well-being and overall health are being discussed by Congress, by policy makers, by local and state legislatures, it is unthinkable to exclude patients from weighing in on the very issues that affect us. Trust me: you’re going to hear from us anyway. Don’t let it be while you’re backtracking from an ill-informed decision. Let it be when you’re discussing the very thing that we’re experts at living with. There’s a reason we’re experts at diabetes. We live with it every single day. Help us help you.

– In all you do, remember: People With Diabetes are worthy of your respect, consideration, and empathy. If you don’t yet possess empathy, it’s not too late to get some. Trust me, it will come in handy. All great leaders throughout our history have not only possessed empathy, they have displayed it often in executing the duties of office. All poor leaders in our nation’s history have lacked empathy. It is a necessary component of accepting the responsibility of any public office.

– Finally: if it’s not too much trouble, I’d like a slice of pie on my Diaversary this year. Anything that doesn’t contain marshmallow, meringue, or pudding.
 
 
I’m Stephen Shaul, and I approve this message.

Vote for Diabetes this November. To make your voice heard, PLEASE VOTE. Diabetes Patient Advocacy Coalition makes it easy to share your concerns to all the candidates right now: CLICK HERE.

More people, more ideas.

We all know and understand that the cost of diabetes is getting cray-cray. Our Wednesday #DSMA Twitter Chat on September 21 got pretty deep into this discussion, and it wasn’t everything that was on the agenda to discuss that night, but it quickly became the single subject of the chat. Sometimes, important issues just take precedence.
dsma1
Our frustrations lie in a lot of places: drug companies, device makers, insurance companies, “pharmacy benefit managers” (I think I will always have quotes around that term—they don’t deserve to be taken seriously), and even our government, who, as I’ve heard so many times, seems to be just “checking our box”, but not really doing as much as they can to help us.

So there’s a lot of blame to go around. What are the solutions?

I’m not sure I have the perfect answer to that. I know what I would like to see happen. Will what I would like to see happen… actually happen? It hasn’t yet, although it has in small ways. But I don’t know if I have the ultimate solution. Or the Next Great Idea. I also know that often, there is more than one way to reach a goal. But…

There have to be certain elements involved in a successful campaign to “Take Back our Diabetes”, to paraphrase certain U.S. political commentators. To me, those elements seem to be, in no certain order:

– A clear Demand (let’s stop calling it an Ask, okay? It’s time to start demanding what we want)

– Enough people willing to demand what we want. Hint: it’s a hell of a lot more than we have now.

– Enough people willing to keep demanding, especially when we get stonewalled. Let’s remember the next diagnosis, the next family living with diabetes. Even if we’ll never see our success, we can keep demanding so future generations won’t have to work so hard. We want them to have it better than we do. I want to always remember this.

– Lots and lots of new ideas. As I mentioned in the Twitter chat, more ideas increases our chances of coming up with great new ideas.
dsma2
– Someone (hopefully, more than one someone) who is well connected and sympathetic to our cause. This could speed things up a lot.

That’s my list so far. I realize I’m not exactly the Einstein of social activism.

To be fair, there are companies providing assistance to people who need it… ALWAYS be sure to check the website for the drug or device you’re using (or interested in) to see if you might be able to qualify for a little help. Even insurance companies have resources to help deal with claims issues. Your state’s insurance commissioner can often be a great place to voice your concerns. All this can be hard sometimes (PWDs have enough to deal with already), but at least it’s something.

That said, it’s fairly clear that 1) We have major issues regarding diabetes affordability and access; and 2) Governments/Companies/Insurance/”PBMs” will need to be forced into action to help solve pricing and procurement problems. That will only happen when it becomes clear that this is a public health and safety issue for everyone living with diabetes and not living with diabetes, and it will only cease to be so when we get what we demand.

Feel free to fill in the blanks.
 
 
Hat tip to Meri at Our Diabetic Life for her inspiring posts last week.

And hat tip to Renza at Diabetogenic for her post too.

%d bloggers like this: