Category Archives: Advocacy

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.

It’s time for our government to protect its citizens.

I’m so mad I could spit.

I watched an interview yesterday on CNBC with the CEO of Mylan, which is coming under fire for enormous price hikes on their Epipen product, which helps people suffering severe allergic reactions stay alive. Now it’s pay up or stay alive. Sound familiar?

CLICK HERE for the interview, then come back.

Well, it looks like common sense isn’t lacking for just male CEOs in this country. At first glance, you might think this is a woman who doesn’t get it. But she gets it, far more than she tries to show in this interview. Only what she gets is different from what the rest of us who depend on a drug to stay alive gets.

Don’t give me platitudes about how the entire healthcare system is failing us without giving us detailed examples of how your company is not part of the problem. And announcing a “rebate program” for patients doesn’t count. It’s a way to hold people at arm’s length, making them fill out more paperwork, make more phone calls, dangling the carrot just out of reach. It’s also probably a tax write-off for you, though probably not as big a tax write-off as moving your “headquarters” out of the USA was. Believe me, there are MANY people who are more frustrated by this than you are. “Facts are inconvenient to headlines”? Really?

This goes back to my post from last October. This CEO’s constant misdirection on the topic of drug overpricing shows that Mylan doesn’t really care if someone dies because they can’t afford an Epipen. Why should they care? If there are ten patients with severe allergies in a room, and one of them dies because they can’t afford an Epipen, what does that mean? If I’m Mylan, it means I have to ship less product, but since I’ve raised the price of my product 600 percent in the past few years, I’m still making more money than when I had ten patients paying the lower price. Win-win!

“Pharmacy Benefit Managers” (yes, I put quotes around that faux title) that work for prescription providers like CVS/Caremark and Express Scripts are to blame too. They’re trying to get as much money as they can, and they’re pretty successful, even if no one can think of a single reason why their jobs are needed in the first place.

Recently, Slate.com has weighed in on drug overpricing to note that this kind of practice is costing insulin-dependent diabetes patients dearly too. Welcome to the party, Slate… where have you been?

So the questions are the same as before. What can be done? How do we get Congress to act? How do we get companies to stop forcing patients to choose between rent or complications, keeping the lights on versus dying?

It is abundantly clear that companies don’t care about anything except revenue. They will not budge, nor will they stop this unethical and unpatriotic practice until they are forced to do so.

I just can’t go into another post about what the diabetes community needs to do to reverse this setback for patients. We’re all tired of this, we’ve seen more than enough examples of excessive greed, and it’s starting to wear on us. But I can tell you what is needed:

The United States Government must get involved to protect patients reliant on drugs to stay alive.

This means the three branches of our federal government… the Legislative, the Executive, and the Judicial, must work together to determine and support policy and pricing that protects patients from seeing these kinds of increases in the future. Our government actually does have the power to do something about this, and if they’re unwilling to act, they’re as much to blame for needless complications and deaths as the drug companies and the prescription providers.

Here are a couple of ideas. I’m just spitballing here, but what the heck, it’s my blog. Let me know what you think:

Limit price increases. Simply put, enact legislation that limits how much of an increase can be implemented for drugs. All drugs. Period. With no exceptions. This is the one item where people might cry “socialism”, to which I say no one ever said anything about no profits for companies. Mylan was already making a huge profit on Epipen before their recent increases. Lilly was already making a huge profit on Humalog. Novo was already making a huge profit on Novolog. And Express Scripts was already making a huge profit on all three.

Are your company’s headquarters outside of the USA? Then the U.S. Government should set the price. Mylan (and many, many other companies, including Medtronic) have gone through a process known as “inversion”, where most or all of a company’s execs and offices remain in the USA, but all their paperwork lists them in a lower tax country, like Ireland, for example. Fine. You want to do that? The federal government should now be allowed to set the price on all medications you sell inside our borders. Actually, let’s amend that to say the Feds should set the price on all items sold to patients in my country. You were making a profit already. Enough of a profit to buy a company in another country and then make that company’s “headquarters” your own so you could skip out on paying U.S. taxes. I don’t see why we can’t say, pay taxes in our country or you have no voice on pricing. American capitalism should only extend to American companies. I know, you’re probably worried that they wouldn’t release new drugs in the USA. Trust me: they’re not going to walk away from the biggest economy in the world, regardless of what they say.

Show some guts elected officials. It’s pretty much down to you now. You are going to have to step up and protect patients. Choose to support us through your words and your actions. This is an issue that affects every registered voter in America.

Show us you’re worth voting for. #PatientsoverProfit

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