#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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#dBlogWeek: Diabetes and the Unexpected

Where the DOC has unexpectedly led me

We’re at the beginning for Diabetes Blog Week and I’m already coloring outside the lines.

Today’s prompt is called diabetes and the the unexpected. Here’s the description:

Diabetes can sometimes seem to play by a rule book that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

Rule book? Random challenges? Yeah, none of that is really resonates with me. What could I have never expected from diabetes?

What I didn’t expect to find after my diagnosis was vibrant and varied diabetes online community, a.k.a. the DOC.

The DOC isn’t just the troup of patient bloggers sharing their BTDT experience. Although there are plenty of active (and semi-active) patient and parent bloggers in the DOC, some of whom are participating this week.

It’s also journalists like Wil Dubois, Mike Hoskins, and Amy Tendrich at DiabetesMine who track everything from the latest research updates to the daily challenges of life with diabetes. And the folks at DiaTribe and Diabetes Daily. These are folks who are actually subject matter experts. They’ve tracked diabetes-related news over time, so they know the history behind the current story. Some of them live with diabetes, others have experienced life with diabetes through someone close to them. Because they understand the true impact diabetes has of people’s lives they’re not satisfied with just reprinting press releases.

It’s advocates like Bennet Dunlap and Christel Marchand Aprigliano who established Diabetes PAC which not only tracks diabetes policy issues but also helps people take political action in support of better health care. And it’s leaders like Manny Hernandez who established the Masterlab program at the Diabetes Hands Foundation to train up-and-coming diabetes advocates.

It’s medical professionals who value the patient’s voice and are committed to working with (and not simply treating) people living with diabetes. Some, like Hope Warshaw even promote the usefulness of the DOC to their patients and colleagues. There’s even been a scholarly article written about the potential benefits of participating in the DOC.

It’s even industry folk who help nurture the social media presence of DOC members. The Roche Diabetes Care Social Media Summits are legend. Now Janssen hosts the annual HealtheVoices conference, this year welcoming 105 patients advocating for 35 medical conditions.

In the DOC I found a generous spirit of people willing to share. We share BTDT experience, knowledge about diabetes and healthcare, and the gallows humor that comes from knowing we won’t get out of this world alive. That weird, wonderful mix has helped me learn how to problem solve when faced with the unexpected. It’s strengthened my voice as an advocate for better health policy and coverage. And it’s given me hope that my future is filled with something more than endless plates of salad.

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There are many more people in the DOC who I’ve learned from and enjoyed spending time with. No way could I mention everyone in a single post. Know that I value your efforts and impact even if I didn’t mention you by name or organization. And I wish everyone in the DOC many more healthful, happy years in our community.

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DISCLOSURE: I attended this year’s HealtheVoices conference. Janssen Global Services, LLC. paid for my travel expenses for this conference. All thoughts and opinions expressed here are my own.

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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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Hey Rep. Ryan, it’s clear you don’t see me as a person

Looking at Speaker Paul Ryan’s argument against Obamacare it’s all about money. Not about the people or healthcare, for that matter.

As I mentioned before, it’s been a couple of wild months filled with whirlwind activity on healthcare reform.

I wasn’t really surprised at the political shenanigans in Washington, DC. After all, this isn’t my first political rodeo.

But, I was surprised by how this one felt. This one was different.

This one felt…personal.

Not personal, in the sense that it is important to me personally or will have a direct effect on my life. Although both of those things are true. But personal in the sense that it felt like I, as a person who needs health care and insurance, am being targeted for punishment.

It all started with the budget

As with many things, it all started with money. In this case, the federal budget. How much tax money are the feds going to spend on health care?

Looking at Speaker Paul Ryan’s argument against Obamacare it’s all about money. Health insurance premiums are higher. Deductibles are higher. Subsidies are going up. Not to mention the effect this is having on the budget deficit.

Budget reconciliation was the first phase of Speaker Ryan’s three-pronged approach to “repeal and replace.” And as a tactic, it was brilliant. The process moves fast. The bill must remain focused, with no “extraneous matter.” And the American Health Care Act had a fast, focused life—going from its introduction, through committee and floor debate, to its death in just four days.

But it doesn’t end there

Once the American Health Care Act was introduced and the details became clear, the circus ring turned into a boxing ring. And I, as a patient, became the punching bag.

Each day, as another detail became clear or another analysis surfaced, i felt another body blow. Another anxiety-provoking change. Another unbelievably cruel twist.

No denial for preexisting conditions was promised. But, if there’s a gap in coverage your insurance company can charge you a 30% penalty on your annual premiums. BOOM!

No more individual mandate was declared. But, if you’re an older person insurance companies can charge you 5x the premium they charge younger (presumably healthier) people. And the individual tax breaks got a lot smaller while insurance industry tax breaks got a lot bigger. BOOM!

No more funding for Medicare expansion. States will get to decide whether to include mental health and addiction services. And the CBO estimated as many as 24 million people could lose their health care insurance. BOOM!

Really? It’s okay for 24 million people to loose health insurance? It’s okay to cut health services?

I was left punch drunk.

Where did all the good stuff go?

The American Health Care Act was all about the balance sheet. How did those figures look? More money to the insurance industry. Less money to the states.

What happened to essential health benefits? You know, the part of Obamacare that says health insurance needs to cover things like check-ups, maternity care, pediatrics, and mental health. They were nowhere to be seen.

Less coverage for the individual.

Just what kind of health insurance were people going to end up with? Who knows? Surely there would be some kind of affordable health insurance, even if it didn’t cover much of the services needed to regain or maintain health.

There. Just don’t get sick and you’ll be okay.

And if you’re already sick? Well, you’ll just have to pay for it.

 

 

The first, of what’s sure to be many, health care reform battles

It’s been a whirlwind couple of months filled with political intrigue and maneuvering. And still, Obamacare stands–for now.

Last Friday the GOP leadership in the House did the unthinkable. They pulled their health care reform bill, the American Health Care Act (AHCA), just before it went up for a vote.

As a patient advocate, I had naively believed I could track the health care reform efforts in Washington, contact my legislators to urge them to vote to preserve health care coverage, and write blog posts about it along the way. I was wrong.

Political intrigue and maneuvering

It’s been a whirlwind couple of months filled with political intrigue and maneuvering leading up to the introduction of the AHCA. It started with Trump’s inauguration day signing of an executive order calling for Obamacare to be dismantled by the federal government. This was followed by a lot of speculation about which plan the Republicans would propose to replace Obamacare. Once the bill was ready the draft was locked-down in a meeting room and made available to select Republican House members. Then the bill was rushed through two committee hearings before the Congressional Budget Office (CBO) could issue it report on its impact. Once the bill was leaked to the press, the mad scramble to read and analyze the bill began.

As soon as it became available, I started reading the analysis and reporting on the bill. I read analysis from the Washington Post, the Kaiser Family Foundation, the CBO, and many others.

Nothing good to say

No one had anything good to say about the bill. Not the American Medical Association. Not health insurers. Not even the White House’s own analysis, which said the results would be even more devastating than what the nonpartisan CBO reported.

The contents were disastrous for anyone who needed health care and didn’t have deep pockets to pay for it. The CBO reported that 24 million people would lose health insurance. So much for the promise to keep everyone covered.

A call to action

Then something very amazing happened.

People took action.

Constituents showed up at town hall meetings and district offices. And they were vocal. A video of Representative Chaffetz (R-Utah) being shouted down with chants of “do your job!” went viral. So many vocal constituents showed up that it was reported that some legislators feared for their safety. It was Tea Party tactics, only this time people who wanted governmental protections were using them.

Constituents called their legislators’ offices in DC and in their district. And, again, they were vocal. So many calls were placed that the Capital switchboard busied-out. So many calls were placed that every staffer ended up on phone duty. Various legislators said that the calls tallied were by-and-large against AHCA. Rep. Daniel Donovan (R-N.Y.) was quoted as saying the calls to his office were 1000-to-1 against.

Facing reality

Last Friday, when it became clear that they didn’t have the votes to pass even after Trump issued an ultimatum to House Republicans, the Republicans bill was pulled before the vote. Speaker Paul Ryan appeared before the press and said that the Affordable Care Act (ACA), aka Obamacare, remains “the law of the land” for the foreseeable future. There were reports that Trump was ready to move on from health care reform.

Patient and health care advocates breathed a collective sigh of relief. A bill that would be disastrous for millions of Americans went down to defeat.

But here we are four days later and Speaker Ryan is quoted as saying, “We are going to keep getting at this thing.” This “thing” being overhauling health care.

The battle might have been won, but the fight is not over.