Sitting at the advocacy table

A recent talk by Michelle Obama got me thinking about diabetes advocacy

Recently, after reading about a talk Michelle Obama gave in Indianapolis, I got to thinking about patient advocacy, particularly about patient advocates having a seat at the table where healthcare decisions are made.

We know that there are many tables in the world where decisions are being made that will have an impact on our health and lives. Some of those tables are in government settings. Others are in medical settings. Still others are in corporate settings.

Whether it’s at a hearing, conference, industrial meeting, clinical trial, or in a doctor’s office. Every day people are having discussions and making decisions that will decide our fate. These discussions determine what resources, if any, are put to finding cures. These decisions determine the affordability and availability of treatments and care.

Every one of these tables could benefit from including patient voices in the discussion. After all, we’re the ones who deal with the day-to-day reality. We’re the ones who suffer the consequences or experience the benefit.  We’re the ones who can help them figure out if there’s a market for the devices, drugs, and treatments they want to sell.

As the saying goes, #NothingAboutMeWithoutMe.

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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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