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.

You can’t be everywhere all the time. If you try to follow every issue or answer every call to action you will exhaust yourself.

In choosing your focus make it something that’s important to you and that you have an emotional stake in. Remember, we need you to be in this for the long haul. That takes energy and passion.

Choosing a single issue to focus on doesn’t mean that you have to ignore all the related issues. It just means that you’re committed to working on that one issue. It’s your priority.

Build a deep understanding of your chosen issue.

Go deep. Learn about the issue you’ve chosen to focus on. Learn its history so that you know how we got to where we’re at. Read what the experts are saying the problem and solutions are so that you have an idea of where we should be heading. Think about your own experience of this issue. Talk with other people about their experiences.

Chances are you are going to be asked to speak up. Whether you’re writing a letter to your legislator, giving testimony, or speaking publicly you’ll want to be able to persuade your audience. You can’t be persuasive if you don’t know what you’re talking about.

Have faith that others are working on the issues that you are not.

We will be more effective as advocates if we split up the work, so to speak. No one person can know everything about a system as big and complex as healthcare. No one person can stay on top of every issue all the time.

Also, recognizing that others are working on the issues that aren’t your priority relieves that feeling of overwhelm that often comes with big projects.

Connect with others and support each others’ efforts.

Advocacy is the kind of work that requires a group effort. There is power in numbers that persuades policymakers to enact laws and regulations that support patient access and affordable healthcare.

Connect with a local branch of a national healthcare advocacy organization. Be active in social media groups like the #DOC (diabetes online community). Donate time, energy, and money, if/when you can afford it.

Knowing that you’re not alone can be energizing and keep burnout away.

Take another deep breath.

We’ve got a long road ahead of us.

◊ ◊ ◊

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.

Go to and enter your zip code. The website will then show you a list of your MOCs and their DC office phone numbers. You will see your Representative in the House of Representatives and your state’s two Senators in the Senate.

[2] Prepare what you want to say.

The call will be short, maybe a minute or two. Be prepared. Write what you want to say. Read through it a couple of times so that it’s familiar and you don’t stumble over your word. Have your script in front of you during the call.

Here’s an outline of what to say with a sample script you can change to meet your needs.

[a] Identify yourself and let the staffer know you are a constituent. If they don’t know you’re a constituent they are likely to ignore you. You may be asked to give your address or some contact info.

Hi, my name is Corinna Cornejo. I’m a constituent of Representative Gabbard and I live on Oahu.

[b] State clearly the issue you are concerned about.

I’m calling about the Republican’s efforts to repeal and replace Obamacare.

[c] State your position clearly and what you’d like the Representative or Senator to do.

I understand that Obamacare needs improvements. However, I do not support repealing it, especially if there’s no clear plan for its replacement. I hope Rep. Gabbard’s votes will support continued access to affordable healthcare for everyone, including for those of us living with pre-existing conditions. 

[d] Add some background or a personal story that tells why this issue is important to you and should be important to the Representative or Senator. Keep it short and to the point.

I, myself, am living with diabetes. Having access to affordable healthcare keeps me alive.

Did you realize that one-in-three people in Hawai`i is affected by diabetes? And if left untreated diabetes can lead to blindness, kidney failure, heart failure, and even death? 

If Obamacare is repealed without a comprehensive replacement hundreds of thousands of people in Hawaii will suffer. 

[e] Wrap it up politely.

Please be sure to tally my support for continued affordable healthcare access for everyone on your call sheet. Thank you.

[3] Call your MOC’s office.

Just do it!

Your message needs to be timely. In other words, call before a key vote of committee hearing happens.

What if your MOC already supports your position? You can still call and say thank you. Thank them for their vote and for supporting the position you want.

What if you miss a key vote or committee hearing? If it’s an issue that ongoing, like affordable healthcare, then you can call to let them know what you want them to support going forward.

Can you call after hours? Sure. You’ll be sent to voicemail and can leave your message there.

[4] Share that you called and anything interesting that happened during the call on social media

Tweet. Facebook. Blog. Sharing is caring.

You can motivate others with a call to action. You can give your legislator a shout out by including their handle. You can join the bigger conversation by including the relevant hashtags.

And it just feels good to know that you stood up for something, used your voice, and were heard.

A few things to remember:
  • Understand that you will most likely be speaking with a junior person in the office. They’re the ones who answer the phone.
  • Conduct yourself professionally. Emotions can run high on issues we care about. But an outburst or snarkiness serves no purpose.
  • Always treat the staffer with respect. They work in a busy office and have a job to do.
  • Understand that this will be a short conversation. Get to the point!
A few don’ts:
  • Don’t call party leadership or committee chairs unless you are their constituent. You can’t vote for them and they won’t care where you stand on the issue.
  • Don’t say that if the Representative or Senator doesn’t vote a certain way or take a certain position they’ve lost your vote. This will be seen as an idle threat. More importantly, this undermines your credibility. If you’re not going to vote for them anyway, why should they listen to you?
  • Don’t bombard the office with calls, faxes, emails, etc. Legislators’ offices are busy places. Their staffers have a job to do. And they don’t like dealing with SPAM any more than you do. If you don’t feel like your concern has been heard then make an appointment to speak with someone in the district office.

◊ ◊ ◊

For those who want to know more about how to reach Congress, check out:

INDIVISIBLE: A Practical Guide for Resisting the Trump Agenda  Former congressional staffers reveal best practices for making Congress listen

For those who want to follow policy issues related to diabetes and healthcare, check out:

Diabetes Advocates hub
A program of Diabetes Hands Foundation, Diabetes Advocates publishes weekly roundups of health policy events in the US, primarily at the federal level. They also have an advocacy resources page.

DPAC: Diabetes Patient Advocacy Coalition
DPAC is a grassroots organization that compiles a Congressional scorecard for individual legislators and issues action alerts on issues affecting people with diabetes.

American Diabetes Association: Advocacy
This national organization advocates for diabetes research and programs.

◊ ◊ ◊

Obamacare: Looking ahead and not liking what I see

We are barely into the first week of 2017 and The New Unified Republican Government™ has Obamacare in its crosshairs.

We are barely through the first week of 2017 and The New Unified Republican Government™ has Obamacare in its crosshairs.

I’m not going to pretend that the Affordable Care Act (also known as Obamacare) is without its problems. The very first problem is the “affordable” part. For some, that hasn’t turn out to be the case. Higher premiums were announced last fall, just before the presidential election. Some health insurance companies have opted out of the exchanges, reducing options for coverage.

But Obmacare has yielded some good results, particularly when it comes to access to healthcare. According to the White House:

  • An estimated 20 million people gained health insurance.
  • 105 million Americans benefit from the elimination of lifetime and annual limits on insurance coverage and the establishment of annual limits on out-of-pocket spending on essential health benefits.
  • As many as 129 million Americans who have some type of pre-existing health condition, including up to 19 million children, can no longer be denied coverage or have their coverage reduced.

This last point is hugely important to people living with chronic illnesses like diabetes.

You see, it used to be difficult to get health insurance with a pre-existing condition. Obamacare changed that. It made it possible (even if it might be expensive) to get health insurance on your own. And this made it possible for people living with diabetes to have some peace of mind.

No longer do people living with chronic illnesses have to worry that if they lose a job or leave a job or move they will be left without health insurance.

No longer do people living with chronic illnesses have to worry that if they end up in the emergency room they, or their families, will end up in financial ruin.

No longer do the lives of people with chronic illnesses have to be determined by their access to health insurance.

This is about to change.

◊ ◊ ◊

“Repeal and replace” is the rallying call among Republicans. But I see a couple of problems with this.

The health care system is vast and complex.

It’s foolhardy to think that you can simply repeal a law that’s taken the better part of six years to implement and everything will be okay. Obamacare touches pretty much everyone in the US in some way.

Repealing it completely will cost the US government $350 billion over the next decade. Hospitals and physicians face uncertainty. Hospitals, especially those providing safety net healthcare services, expect their revenues to drop dramatically. Some healthcare stocks have taken a hit.

No one knows what “replace” means. 

The Republicans have destabilized healthcare in the US by making every aspect of Obamacare uncertain.

There’s a debate about which aspects of Obamacare might be kept. Being able to keep your child on your insurance until they reach 26, removing the prohibitions for pre-existing conditions, and automatic coverage for preventative care have all proved popular.

But can we have these popular benefits without some of the unpopular ones? Like the mandate to have healthcare insurance, for one?

You see, Obamacare was structured so that one part balances out the other. If you chip away at that balance will the financial and structural underpinnings of healthcare in the US be undermined? That remains to be seen, but conventional wisdom says yes.

In the meantime, we’re already starting to hear promises from Republicans and their spokespeople assuring us that no one will lose their healthcare coverage after Obamacare is repealed.

Forgive me for being skeptical.