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.

Continue reading “Sitting at the advocacy table”

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.

REPEAL AND REPLACE DERAILED

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.

rEVISIONS MADE, BUT ARE THERE ENOUGH VOTES?

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