What now, that Trumpcare is on its way to the Senate?

Can we talk about single payer now?

A week ago my head was swirling with the news that Trumpcare had passed out of the House by the slimmest of margins. Not only had the Republicans revived the AHCA, but they got the votes needed by adding the draconian MacArthur amendment.

And then Congress went on recess, returned to their home districts, and faced their constituents. Things didn’t go smoothly for everyone.

Rep. Labrador’s (R-ID) town hall went viral when he was filmed claiming that “Nobody dies because they don’t have access to health care.

Rep. MacArthur (R-NJ) had a five-hour town hall meeting where the crowd was hostile and the news media well represented. Kind of hard to blame his constituents for their strong reaction. After all, the amendment that bares Rep. MacArthur’s name is expected to make healthcare for prohibitively expensive for millions of people. People who didn’t realize that giving birth or having gone through a c-section or experiencing postpartum depression put them among those with preexisting conditions. People who rely on expanded medicaid coverage that could be undermined by their state opting out of some provisions. People who are in their 50s or 60s, or one day will be. People who now fear that they won’t be able to afford health insurance for themselves or their families. They’re not happy about that. And they’re letting their members of congress know that.

Just yesterday Budget Director Mick Mulvaney suggested that people should pass the “Jimmy Kimmel test” to get health insurance. He also suggested that people with diabetes wouldn’t pass this test.

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It’s one thing to deny someone a right or privilege. It’s a whole other thing to take away a right or privilege after it’s been given.

Obamacare, which remains the law of the land, gave Americans the right to access health care.  It doesn’t matter if you are living with a preexisting condition, you cannot be denied or priced out of coverage. It doesn’t matter if you’re a man or a woman, you cannot be charged more for insurance just because of your gender. You can expect to have the ten essential health benefits covered.

We’ve been living with these assurances for a couple of years now. Long enough to feel the effects on our personal health. But not so long that we’ve forgotten what it’s like to be denied health insurance because you were unlucky enough to be labeled with a preexisting condition, like diabetes. Not long enough to forget how expensive prescriptions can be when you have to buy them retail. Not long enough to forget how a single trip to the emergency room can put you on the road to bankruptcy.

The argument for the AHCA is an economic one: the country can’t afford to pay for everyone to have health insurance. Healthcare costs are on an upward trajectory. Chronic illness is epidemic.

The argument against AHCA is an economic one: the country can’t afford to have its productivity and GDP undermined by a chronically ill population. Chronic illness is epidemic.

Where these two sides diverge is in their preferred solution. One wants the individual to pay. The other wants the group to pay. The result is stalemate.

So, where do we go from here?

Can we discuss single payer now?

I think we’re going to have to ask the thirteen male GOP senators who are writing the Senate’s version of the healthcare bill.

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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.

 

 

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

It’s been a whirlwind couple of months filled with political intrigue and maneuvering leading up to the introduction of the AHCA. It started with Trump’s inauguration day signing of an executive order calling for Obamacare to be dismantled by the federal government. This was followed by a lot of speculation about which plan the Republicans would propose to replace Obamacare. Once the bill was ready the draft was locked-down in a meeting room and made available to select Republican House members. Then the bill was rushed through two committee hearings before the Congressional Budget Office (CBO) could issue it report on its impact. Once the bill was leaked to the press, the mad scramble to read and analyze the bill began.

As soon as it became available, I started reading the analysis and reporting on the bill. I read analysis from the Washington Post, the Kaiser Family Foundation, the CBO, and many others.

Nothing good to say

No one had anything good to say about the bill. Not the American Medical Association. Not health insurers. Not even the White House’s own analysis, which said the results would be even more devastating than what the nonpartisan CBO reported.

The contents were disastrous for anyone who needed health care and didn’t have deep pockets to pay for it. The CBO reported that 24 million people would lose health insurance. So much for the promise to keep everyone covered.

A call to action

Then something very amazing happened.

People took action.

Constituents showed up at town hall meetings and district offices. And they were vocal. A video of Representative Chaffetz (R-Utah) being shouted down with chants of “do your job!” went viral. So many vocal constituents showed up that it was reported that some legislators feared for their safety. It was Tea Party tactics, only this time people who wanted governmental protections were using them.

Constituents called their legislators’ offices in DC and in their district. And, again, they were vocal. So many calls were placed that the Capital switchboard busied-out. So many calls were placed that every staffer ended up on phone duty. Various legislators said that the calls tallied were by-and-large against AHCA. Rep. Daniel Donovan (R-N.Y.) was quoted as saying the calls to his office were 1000-to-1 against.

Facing reality

Last Friday, when it became clear that they didn’t have the votes to pass even after Trump issued an ultimatum to House Republicans, the Republicans bill was pulled before the vote. Speaker Paul Ryan appeared before the press and said that the Affordable Care Act (ACA), aka Obamacare, remains “the law of the land” for the foreseeable future. There were reports that Trump was ready to move on from health care reform.

Patient and health care advocates breathed a collective sigh of relief. A bill that would be disastrous for millions of Americans went down to defeat.

But here we are four days later and Speaker Ryan is quoted as saying, “We are going to keep getting at this thing.” This “thing” being overhauling health care.

The battle might have been won, but the fight is not over.

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.”

Health insurance companies are saying that repeal and delay will “destabilize the individual insurance market.” Without a replacement in place, they warn that premiums could go up as much as 20% in 2018.

Economists estimate repeal will result in the loss of 3 million jobs. One report goes so far as to say repealing Obamacare will cost the federal government $350 billion over the next decade.

The Republicans have floated a couple of replacement test balloons.

There’s the Cassidy-Collins plan which is most simply described as giving the states three options: keep Obamacare, make their own replacement with some federal subsidy, or opt-out completely not taking any federal funding. This proposal also eliminates “essential health benefits” including hospitalization, pregnancy and maternity care. And while insurers still have to offer coverage to people with pre-existing conditions, they can charge higher premiums if that person had any interruption in health insurance coverage.

The American Healthcare Reform Act of 2017 was introduced to the House and referred to committee on January 4th. Based on work by the Republican Study Committee, this bill would make the cost of health insurance a standard tax deduction for employers and individuals, expand funding for high-risk pools for the states, guarantee coverage for pre-existing conditions as long as there hasn’t been a break in coverage, allow buying health insurance across state lines, reforms medical liability law, and prohibits federal funding of abortion.

Neither of these seems as comprehensive or balanced as Obamacare.

Finally, there’s the A Better Way blueprint for healthcare reform. Looking at the summary of this proposal it seems the most comprehensive. It talks about using a tax credit to make health insurance portable, allowing people to buy health insurance across state lines, enacting medical liability reform, protecting people with pre-existing conditions, allowing dependents to stay on their parent’s insurance up to age 26, and prohibiting sudden cancellations. It also proposes a one-time open enrollment for individuals to get insurance “regardless of how healthy they are.” It proposes to “bring Medicaid into the 21st century” by empowering states “to design Medicaid programs that best meet their needs.” And it would enact the Weldon Amendment giving healthcare professionals “the freedom to exercise their conscience” and enforce the Hyde Amendment keeping “federal tax dollars from being used for abortion or abortion services.” Also in this proposal, there’s a declaration to strengthen funding to the NIH, accelerate development of new drugs, spur the use of electronic health records, and secure the financial future of Medicare.

Last week the Republican retreat took place in Philidelphia. Healthcare was clearly at the top of the agenda for this annual gathering of congressional Republicans. But when all was said and done no clear consensus or direction on repeal and replace/delay emerged. Both the Washington Post and the New York Times reported that rather than unifying on the issue, Republicans agonized over the effects of quickly repealing Obamacare and potential political fallout.

PBS Newshour reported hat the legislative timeline is very loose; the effort “could take them through the summer.” And don’t expect a single, comprehensive bill. Rep. Greg Walden, R-OR, and chair of the House Energy and Commerce Committee, told reporters to not look for a single plan or a single fix.

If that holds true we’re looking at a long road ahead filled with a lot of small, piecemeal bills. I expect the Republicans will try to maintain the popular aspects of Obamacare, like no exclusions for pre-existing conditions. But without a comprehensive approach to healthcare it’s not clear that anyone living with a pre-existing condition will be able to afford health insurance under Trumpcare.

 

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.

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