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.

"There are a lot of people who get to the table, and they're too nervous to add that value. Because a lot of times, they get to the table and they're so concerned with not losing the seat at the table." -- Michelle Obama

Once a patient gets a seat at one of these tables the stakes are high. Even when that one patient takes pains to say she is speaking based on her own experience and knowledge, her words are taken as speaking for thousands, maybe even millions, of people. This responsibility can weigh heavily.

It’s not easy to get a seat at the table. The patient has to be invited. Which means the host needs to know the patient or their advocacy work in some way. The host is looking for an influencer, someone who can share and promote what happens at their table. Part of being a patient advocate who gets a seat is being visible and having a following.

Usually the host pays travel expenses for the patient to participate. Because something of value has exchanged hands a formal agreement is usually signed. And the law requires that the patient disclose this arrangement any time she writes or talks about being at the table and what happened there.

We patients realizes that our seat at the table is not guaranteed. Just because we were asked to participate once doesn’t mean we’ll be asked to participate again. There’s no guarantee that any other patient will be asked to participate ever again.

Knowing this, it’s natural to wonder “What happens when I no longer have a seat at this table?” Fear can take hold. “What if I say something wrong? Will that mean to no other patient will be invited to this table?” Worry can take over. “Maybe I should be careful what I say. Maybe I should just stay quiet.”

To that I say, “Be brave. Speak up.”

“We’re everywhere right now. But if we’re everywhere being quiet, if we’re everywhere being afraid, then we’re not really using the leverage to our advantage.” –Michelle Obama

Remember, we don’t lose our voice if we’re not asked back to sit at any particular table. We only lose access to someone else’s platform.

And maybe, just maybe, that platform isn’t for us.

There’s no guarantee that the other people at that table understand, accept, or even value what patients have to say. They might not be in a position to use what we offer in terms of information, knowledge, and insight.

“Maybe you say something that gets you kicked out of the table. Well, maybe that’s not a table you need to be at.” –Michelle Obama

Thankfully, patient advocates have access to social media, patient communities, and advocacy organizations. We can, and have, build our own platforms for communication and influence. An amazing array of decision makers pay attention to social media these days. Actual discussions of health issues take place on Twitter and Facebook. Activism is now part of most advocacy organization playbooks.

We can lift our voice wherever we are, whenever we have something valuable to share.

We just have to keep at it.

“I was loud and persistent. OK, maybe not always loud, but always persistent.” –Michelle Obama

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

Continue reading “The first, of what’s sure to be many, health care reform battles”

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.”

Continue reading “Last chance to sign up for Obamacare”

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.

Continue reading “Patient advocacy under Trump”