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

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Last chance to sign up for Obamacare

Today is the last chance to sign up for Obamacare. What happens next?

Today, January 31, 2017, is the last day of open enrollment for health insurance on the Obamacare exchanges.

For those of us living with a chronic health condition, like diabetes, this is a sad day. Are we hearing the death knell of access to affordable health insurance? We don’t know.

While the new administration has begun the process of repeal with Congress passing a budget resolution and the President signing the Executive Order Minimizing the Economic Burden of the Patient Protection and Affordable Care Act Pending Repeal, it hasn’t presented a clear plan for replacement.

Since Obamacare touches nearly everyone, patients aren’t the only ones concerned about the effects of repeal without a replacement, or as some are framing it “repeal and delay.”

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Patient advocacy under Trump

President Trump was quick to take action on repealing Obamacare. With no replacement in sight, here are some thoughts on how to be effective patient advocates.

It’s official. Donald J. Trump has taken the oath and become the 45th president of the United States. And, as promised, one of his first official acts was aimed at dismantling the Affordable Care Act (ACA), also known as Obamacare. Hours after the swearing-in President Trump signed his first executive orders, including one that “eases the burdens” of Obamacare. While it’s unclear exactly how this executive order will be implemented (as of this writing the only public copy I was able to find was a photo on Twitter) there are warnings that it is will severely damage or gut Obamacare.

Looking ahead to the next four years I expect patients and their advocates will be more politically active, defending their rights to access affordable healthcare. To be effective we have to get and stay engaged for the long haul. Healthcare policy is complex and it’s not going to be resolved with a single action or piece of legislation.

Where do we start? Here are my thoughts.

Start by taking a deep breath.

Advocating for patient rights and healthcare access is going to be a lot of work and it’s going to take time to get done. Your brain can use the shot of oxygen and your nerves can use the calming effect of a deep breath.

Choose one thing to focus on.

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Repealing Obamacare: How to be heard by Congress

Things are moving quickly on repealing Obamacare. Make sure Congress knows where you stand on repeal and replace.

Originally I was going to write a self-reflective post this week about how I’m managing my emotions after the election. But things are moving too quickly on repealing Obamacare for that.

Yesterday, the Senate passed a budget resolution which was the first step in the Obamacare repeal process. Today, the House voted to do the same.

No time for navel gazing. Time to take action.

Time to let my members of Congress (MOC) know where I stand on repealing and replacing Obamacare, aka the Affordable Care Act (ACA).

I urge you to do that same. Here’s how.

Call your congressperson and senators!

[1] Find out who represents you in Congress.

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When a Person with Diabetes Shouts in the Forest…

I spent time in the office. I played Ingress and walked 8KM in the process. My BG ran a little high and I didn’t obsess about it. I attended the DiabetesMine Innovation Summit and caused a ruckus.

…does anybody hear?

Heading home after a week in California.

I spent time in the office. I played Ingress and walked 8KM in the process. My BG ran a little high and I didn’t obsess about it. I attended the DiabetesMine Innovation Summit and caused a ruckus.

“You know what? I don’t give a s### about your balance sheet.” That’s the moment when everything changed. In the room and in my head. Whether I realized it or not my heart was already there.

It was during the payers (health insurance companies) panel. I stood up and yelled this out to the panel.

The reps, some with a medical background, were talking about how expensive chronic illness is. As if we, people living with diabetes, didn’t know this fact. The payers panel pointed out that the accelerating cost of  healthcare is unsustainable. As if we didn’t realize this every time we look at our personal bank accounts.

“I don’t see anybody up there (on the panel), except for the lady from Arkansas (Health Exchange), talking about patients.” I could feel the blood rushing to my face. I took a deep breath. I tried to calm down.

The tension in the room had been building.

Once again the patient was being scolded by the healthcare establishment. Do you take care of your diabetes? Do you know how expensive pumps are especially if you change them every couple of years? And with ACA the rules are changing and the future is even more uncertain.

The audience sat shifting around in their seats uncomfortably. The all too common questions rattling around it their heads. Aren’t these the companies who are supposed to help us get the care we need? Don’t they understand that we want the latest therapies and medical technology, not because it’s the latest and the greatest, but because it’s our only hope for a healthier life? We want to avoid those expensive complications. Without the illusive cure, access to the most current therapies is our only hope. We are putting our trust in the medical establishment and the healthcare insurance companies.

More than that. We’re putting our very lives in their hands.

I took another deep breath in an attempt to calm down. That was the point @SweetlyVoiced spoke up to tell her story. She let the panel know that even though they say their companies want to “get patients the care they need” that’s not what we patients are experiencing.

It was called the “Patients’ Voice Summit.” Sometimes, to be heard you got to raise your voice — even if it feels uncomfortable for everybody in the room.


DISCLOSURE: The folks at the DiabetesMine invited me to attend the 2013 DiabetesMine Innovation Summit as a winner of the Patient Voices Contest. They paid for my airfare, hotel, and meals while at the summit.