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

Beaten down on health care

I started writing this post four days ago. I had trouble getting a handle on just where repeal and replace was going. And I’m not the only one…

I started writing this post four days ago.

I had trouble getting a handle on just where repeal and replace was going. And I’m not the only one.

The saga of repeal and replace has had more twists and turns than a LeCarré novel. And while it’s unlikely to bring down this Western democracy, repeal and replace will have a dramatic effect on the 1/6 of the US economy that is healthcare. More importantly, it will undercut the health of millions of Americans whose poorer health will send a shock wave through our society and the rest of our economy.

During this past week procedural questions came up. Did all of the original bill qualify under the Byrd Amendment or did parts of it need 60 votes to pass?

One bill under consideration became four. Drafts were not available for review. Senate Whip John Cornyn was quoted as saying we might not have the “luxury” of seeing the bills before the vote. And the CBO couldn’t sore ghost bills so we might not have the “luxury” of knowing their impact before the vote. But it’s estimated that somewhere between 22 and 32 million Americans would loose their health insurance if any of the repeal and replace schemes that have been discussed are enacted.

Continue reading “Beaten down on health care”

Trumpcare, it wasn’t supposed to go like this…

Where do we go with healthcare reform after months of partisan bickering? We cannot simply ignore one-sixth of the economy and its impact on people’s lives.

This was supposed to be the week when the GOP came back from July recess, ready to vote for the AHCA or the BCRA or whatever they’re calling Trumpcare these days.


But then this happened.

New York Times: Donald Trump, Jr. makes the Russian connection

A meeting during the presidential election between Donald Trump, Jr. and a Russian lawyer came to light. It might have been about the election. It might have been about adoptions. It might have been collusion, or corruption, or something else. Donald Jr. kept changing his story. Then he tweeted out a series of emails about this meeting.

Needless to say everyone’s attention in the news media and Washington, was drawn to Russia and its attempts to influence the last presidential election.


Continue reading “Trumpcare, it wasn’t supposed to go like this…”

The political theater of Trumpcare

The battle over the latest version of Trumpcare promises all the drama, tragedy, and irony political theater can muster.

After more than a month of hurry up and wait the Senate Republicans released their version of Trumpcare. It’s called the Better Care Reconciliation Act (BCRA). On the fast track for a full Senate vote within a week, it’s name foreshadows all the drama, tragedy, and irony that political theater can muster. And every American, who chooses to to pay attention, has a front row seat.

What happens now?

Act 1, in which everyone rushes to judgement.

A flurry of action takes place across the media landscape.

The news media is screaming out headlines like these.

Winners and losers from the Senate repeal bill

Republican Senators pretend people who get kicked off of Medicaid will just start buying insurance

Poll: Trump’s approval at 40%, only 16% support House’s health care bill

Senators are tweeting and posting to Facebook and broadcasting on Facebook Live their readings of the bill.

Various health organizations have launched campaigns urging people to tell their Senators to vote “no” on the bill.

Continue reading “The political theater of Trumpcare”

If Senate Republicans write the healthcare bill in the dark…

Will the healthcare bill ever see the light of day?

How can you vote on a bill that will affect health insurance coverage for 24 million people without reading it first?

It’s been just over a month since Trumpcare (formally known as the American Health Care Act of 2017 or AHCA) passed out of the House and landed in the Senate.

During this time there hasn’t been much to write about because no one has seen the Senate Republicans’ bill. They have a select group of Senators writing the bill, in private, with no discernible input from anyone.

This isn’t how these things normally go.

Continue reading “If Senate Republicans write the healthcare bill in the dark…”