Hey Rep. Ryan, it’s clear you don’t see me as a person

Looking at Speaker Paul Ryan’s argument against Obamacare it’s all about money. Not about the people or healthcare, for that matter.

As I mentioned before, it’s been a couple of wild months filled with whirlwind activity on healthcare reform.

I wasn’t really surprised at the political shenanigans in Washington, DC. After all, this isn’t my first political rodeo.

But, I was surprised by how this one felt. This one was different.

This one felt…personal.

Not personal, in the sense that it is important to me personally or will have a direct effect on my life. Although both of those things are true. But personal in the sense that it felt like I, as a person who needs health care and insurance, am being targeted for punishment.

It all started with the budget

As with many things, it all started with money. In this case, the federal budget. How much tax money are the feds going to spend on health care?

Looking at Speaker Paul Ryan’s argument against Obamacare it’s all about money. Health insurance premiums are higher. Deductibles are higher. Subsidies are going up. Not to mention the effect this is having on the budget deficit.

Budget reconciliation was the first phase of Speaker Ryan’s three-pronged approach to “repeal and replace.” And as a tactic, it was brilliant. The process moves fast. The bill must remain focused, with no “extraneous matter.” And the American Health Care Act had a fast, focused life—going from its introduction, through committee and floor debate, to its death in just four days.

But it doesn’t end there

Once the American Health Care Act was introduced and the details became clear, the circus ring turned into a boxing ring. And I, as a patient, became the punching bag.

Each day, as another detail became clear or another analysis surfaced, i felt another body blow. Another anxiety-provoking change. Another unbelievably cruel twist.

No denial for preexisting conditions was promised. But, if there’s a gap in coverage your insurance company can charge you a 30% penalty on your annual premiums. BOOM!

No more individual mandate was declared. But, if you’re an older person insurance companies can charge you 5x the premium they charge younger (presumably healthier) people. And the individual tax breaks got a lot smaller while insurance industry tax breaks got a lot bigger. BOOM!

No more funding for Medicare expansion. States will get to decide whether to include mental health and addiction services. And the CBO estimated as many as 24 million people could lose their health care insurance. BOOM!

Really? It’s okay for 24 million people to loose health insurance? It’s okay to cut health services?

I was left punch drunk.

Where did all the good stuff go?

The American Health Care Act was all about the balance sheet. How did those figures look? More money to the insurance industry. Less money to the states.

What happened to essential health benefits? You know, the part of Obamacare that says health insurance needs to cover things like check-ups, maternity care, pediatrics, and mental health. They were nowhere to be seen.

Less coverage for the individual.

Just what kind of health insurance were people going to end up with? Who knows? Surely there would be some kind of affordable health insurance, even if it didn’t cover much of the services needed to regain or maintain health.

There. Just don’t get sick and you’ll be okay.

And if you’re already sick? Well, you’ll just have to pay for it.

 

 

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.

◊ ◊ ◊

The True Cost of Stigma in Type 2 Diabetes

Published by Diabetic Connect. Because type 2 diabetes is seen as preventable, we are blamed…

Published by Diabetic Connect.

http://www.diabeticconnect.com/diabetes-information-articles/general/2624-the-true-cost-of-stigma-in-type-2-diabetes