#dBlogWeek: More Than Diabetes

Life, an unalienable Right

Today’s Diabetes Blog Week prompt:

 Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!

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I feel like I’ve been writing outside the lines all week. So, I guess I won’t stop now.

What is my passion?

Policy.

I’m a policy wonk.

I believe that politics matter because government can do good for the people—or it can do bad.

My voice and my vote is how I influence my government to do good.

Politics and government are difficult subjects to bring up in polite company. Especially these days when the country if so polarized and seems to be experiencing collective PTSD over the legitimacy of those in power.

Why is policy so important to me?

Maybe it’s because I’m the grandchild of immigrants who came to the US to escape a bloody revolution.

Maybe it’s because members of my family experienced poverty and that poverty was relieved by government programs.

Maybe it’s because I worked on education reform in the hope that my children would receive a quality public education.

Maybe because deep down I’m an idealist whose heart is still stirred by these words:

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness. — That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed…”

What does this have to do with diabetes?

Right now? Everything.

In Washington we have a Congress hell-bent on repealing the ACA (a.k.a. Obamacare) and replacing it with tax breaks for the rich.

In the pharma industry we have companies who one week brag to their investors how profitable their insulin business is and the next week invite diabetes patient advocates to call out PBMs (Pharmacy Benefit Managers) for price increases.

We have people turning to crowdfunding sites to pay for their medication. And when that fails, their friends and family update their pleas to pay for a funeral.

It shouldn’t be this way. That’s why policy matters to me. And that’s why I advocate for health care affordability and access.

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#dBlogWeek: What Brings Me Down

The one thing that always brings me down about diabetes

Today’s Diabetes Blog Week prompt:

May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

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There’s one thing in particular that always brings me down when it comes to diabetes. That is talk of a cure.

Talk of a cure, you say? Why would that bring you down? Wouldn’t it give you hope? Hope that one day you won’t have to take pills or shoot insulin? Hope that one day you can go for a hike without worry that you’ll go low on the trail? Hope that one day you can eat a carb-heavy meal without judgement?

First of all, when people talk about a cure for diabetes they aren’t talking about me. They’re talking about resurrecting the pancreas. Regenerating a vital organ. Finding a way for the body to make insulin again.

People think they know the cure for the type of diabetes that I have. It’s lifestyle change. Lose weight. Exercise. Stay away from sugar. Eat more vegetables. Cinnamon. Yeah, right.

No consideration is given to genetic or environmental factors that trigger or encourage insulin resistance. There’s conflicting evidence on whether obesity is a cause or a co-morbidity. There’s disagreement as to whether type 2 diabetes is a metabolic disorder or an autoimmune disease. There’s more judgement than curiosity.

Bottom line is I don’t think I’ll see a cure in my lifetime. Not because I don’t think we’re capable of finding or developing a cure. But because we don’t have the social and political will to do so.

We’re stuck in the paradigm of how to treat an infectious epidemic. Find the cause and neutralize it. Make a pill or a medicine. Develop a surgery or an artificial organ. We have established industries of businesses and organizations doing this kind of work.

What we don’t have is a coordinated, science-based industry focused on what we need to change to stop the rise of chronic disease.

Such an industry would look at the rise of chronic illness in the national context of policy decisions, societal norms, and physical environment, as well as human behavior and health care practices. This is a complex and difficult undertaking. It would involve looking at everything—from the effect of chemicals in our environment to the effect of favoring feed crops and dairy in subsidized school lunch programs.

It’s unlikely that we will find a single factor that, if addressed, will solve the epidemic of chronic illness we face today. The cure will require major changes in a lot of different areas. That will require going up against a lot of entrenched and conflicting interests.

Which brings me back to the question of having social and political will.

Which I don’t think exists for the kind of lifestyle change we, as a society, need.

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#dBlogWeek: The Blame Game

When health becomes the target of judgement

Today’s Diabetes Blog Week prompt:

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!

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There’s plenty of blame to go around

There is plenty of talk about how people with diabetes feel the sting of  blame from comments and assumptions made by people outside the diabetes community.

Only this past week the internet blew up when federal budget director Mick Mulvaney in commenting on healthcare reform said, “It doesn’t mean we should be required to take care of the person who sits home, drinks sugary drinks, doesn’t exercise, eats poorly, and gets diabetes.”

Ouch. That hurt.

Also, it’s ignorant.

As the American Diabetes Association declared shortly after Mulvaney’s comments, “No one chooses diabetes.”

We also talk about the blame game that goes on with our health care teams. The very people who are supposed to be in a position to help us manage our health better can be just as negative and uninformed.

My friend Brian tells the story of how his (former) endo undermined Brian’s confidence and motivation with the message “If You Weren’t So Fat You Wouldn’t Have Diabetes.”

Before you assume that only people with type 2 experience this kind of condescending treatment from their doctors, take a look at what my friend Steven has to say about “The Blame Game.”

Language and tone are important. They can build or undermine confidence and motivation. They are so important that Diabetes Australia has even issued a position statement on the language to use when communicating about diabetes.

What we don’t talk about

But there’s a version of the blame game that we don’t talk about.

That’s the blame game that goes on within the diabetes community. When one person or group touched by diabetes snarks on another.

It’s when someone says, “I couldn’t prevent my diabetes.”

It’s when someone says, “Without insulin, I die.”

It’s when someone says, “We should change the names so that people know there’s a difference.”

These comments are often couched in terms of trying to clarify the differences between one type and another. In reality it’s a way of distancing themselves from the other.

It’s a way of saying “I’m not like you.”

It’s a way of saying “I’m better than you.”

And it’s just as hurtful, demeaning, and as undermining as any blaming comment made by someone outside the diabetes community.

Maybe even more so.

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#dBlogWeek: The Cost of Chronic Illness

$245 billion is what diabetes costs the US in a year. How did we get here? What can we do?

Today’s Diabetes Blog Week prompt:

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

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$245,000,000,000

In 2012 the total cost of diabetes in the US was put at $245 billion. That’s the dollar figure the American Diabetes Association attached to the direct medical costs and reduced productivity combined.

$245 billion. Five years ago. Let that sink in for a minute. According to the 2012 CIA World Fact Book that was roughly equivalent to Chile’s total GDP.

These are costs we all, as a collective, bear.

We experience the effect of these costs as more and more of our tax dollars (and our own dollars) go to pay for health care to treat, but not cure, chronic illness.

We experience the effect of these costs in the a sluggish economy dragged down by a less productive, more disabled workforce.

We experience the effect of these cost in the sorrow of lives cut short.

How did half of all adults in the US come to live with one or more chronic illness?

There’s no one cause

It’s the result of an accumulation of decisions and actions and policies.

It’s the result of subsidizing corn and soy, but not lettuce and squash. It’s the result of eliminating physical education in school and replacing it with for-pay sport leagues. It’s the result of building suburbs for travel by car and not travel by foot or on bike.

It’s also the result of unsafe neighborhoods where people are afraid to walk the streets or let their kids go out and play. It’s the result of food deserts where it’s cheaper to buy a bag of chips than a piece of fresh fruit. It’s the result of the continual, low grade stress that accompanies stagnant wages and uncertain job prospects.

Where do we go from here?

Clearly changes need to be made.

The CDC identifies four health behaviors that can counter the risk for chronic illness. They are: regular physical activity or exercise; good nutrition; eliminate tobacco use; and limit alcohol consumption. Together these four behaviors can counter all chronic illness.

On the face of it it’s easy to assume that the individual should just adopt these healthy behaviors and everything will be good. No wonder people with diabetes, particularly people with type 2 diabetes, gets vilified.

But, it’s not that simple.

Environment plays a role in changing behavior. If the environment makes it easy to adopt healthy behaviors people are more likely to adopt and maintain those behaviors. What if we built those kinds of environments in our communities?

What if we identified, built, and maintained safe places in our communities for people to be physically active? In every neighborhood.

What if we built and maintained community gardens? In the city and the country.

What if we had community educational programs to teach health, nutrition, and job skills? And what if we offered these programs at low or no cost?

What if we had community-based campaigns to encourage people to use these places, gardens, and programs?

It won’t be cheap. But I doubt it will cost the GDP of Chile.

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What now, that Trumpcare is on its way to the Senate?

Can we talk about single payer now?

A week ago my head was swirling with the news that Trumpcare had passed out of the House by the slimmest of margins. Not only had the Republicans revived the AHCA, but they got the votes needed by adding the draconian MacArthur amendment.

And then Congress went on recess, returned to their home districts, and faced their constituents. Things didn’t go smoothly for everyone.

Rep. Labrador’s (R-ID) town hall went viral when he was filmed claiming that “Nobody dies because they don’t have access to health care.

Rep. MacArthur (R-NJ) had a five-hour town hall meeting where the crowd was hostile and the news media well represented. Kind of hard to blame his constituents for their strong reaction. After all, the amendment that bares Rep. MacArthur’s name is expected to make healthcare for prohibitively expensive for millions of people. People who didn’t realize that giving birth or having gone through a c-section or experiencing postpartum depression put them among those with preexisting conditions. People who rely on expanded medicaid coverage that could be undermined by their state opting out of some provisions. People who are in their 50s or 60s, or one day will be. People who now fear that they won’t be able to afford health insurance for themselves or their families. They’re not happy about that. And they’re letting their members of congress know that.

Just yesterday Budget Director Mick Mulvaney suggested that people should pass the “Jimmy Kimmel test” to get health insurance. He also suggested that people with diabetes wouldn’t pass this test.

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It’s one thing to deny someone a right or privilege. It’s a whole other thing to take away a right or privilege after it’s been given.

Obamacare, which remains the law of the land, gave Americans the right to access health care.  It doesn’t matter if you are living with a preexisting condition, you cannot be denied or priced out of coverage. It doesn’t matter if you’re a man or a woman, you cannot be charged more for insurance just because of your gender. You can expect to have the ten essential health benefits covered.

We’ve been living with these assurances for a couple of years now. Long enough to feel the effects on our personal health. But not so long that we’ve forgotten what it’s like to be denied health insurance because you were unlucky enough to be labeled with a preexisting condition, like diabetes. Not long enough to forget how expensive prescriptions can be when you have to buy them retail. Not long enough to forget how a single trip to the emergency room can put you on the road to bankruptcy.

The argument for the AHCA is an economic one: the country can’t afford to pay for everyone to have health insurance. Healthcare costs are on an upward trajectory. Chronic illness is epidemic.

The argument against AHCA is an economic one: the country can’t afford to have its productivity and GDP undermined by a chronically ill population. Chronic illness is epidemic.

Where these two sides diverge is in their preferred solution. One wants the individual to pay. The other wants the group to pay. The result is stalemate.

So, where do we go from here?

Can we discuss single payer now?

I think we’re going to have to ask the thirteen male GOP senators who are writing the Senate’s version of the healthcare bill.

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