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judithcsmith · 5 years

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This battle to protect Americans with pre-existing conditions is personal

EDITOR’S NOTE: On February 6, 2019, Peter Morley testified before a U.S. House of Representatives Subcommittee oversight hearing titled “Impact of the Administration’s Policies Affecting the Affordable Care Act.” Peter’s testimony – about the “critical importance of the Affordable Care Act and the Trump Administration’s ongoing efforts to undermine it” – is one of more than 275 meetings he’s held with legislators in Washington, DC, as a passionate advocate for healthcare that is accessible and affordable to people with Lupus and other chronic illnesses.

We’ve asked Peter to share an abbreviated, edited version of his testimony with our readers.

My introduction to pre-existing conditions

In 1997, I sustained an injury during a period of time when my insurance coverage had lapsed. I ended up paying the costs of my physical therapy, epidural steroid injections, and medications out of my own pocket. Worse, when I needed surgery a couple of years later, my injury was considered a pre-existing condition and all my claims were denied for the procedure – despite the fact that I’d secured health insurance through my new employer.

The bills from that surgery were an incredible financial burden for years, totaling tens of thousands of dollars. It was my first introduction to the broken United States healthcare system and my real first harrowing encounter with the obstacle called pre-existing conditions. But it was just the beginning.

10+ pre-existing conditions …

In 2007, I was permanently disabled – and rendered unable to work – after I fell from a ladder. (I was fortunate to be spared the entire cost of my medical bills because at that time, I had continuous insurance coverage. Since then, I have had 10 surgeries in 11 years, including four spinal surgeries. Three were failed spinal fusions; the last one caused irreversible nerve damage.)

Four years later, I was diagnosed with kidney cancer and lost part of my right kidney, but fought my way into remission in 2016. Since then, I have had two neurosurgeries for benign pituitary tumors, two carpal tunnel surgeries and one surgery to remove a malignant melanoma.

In addition, I have had diagnoses over the last 11 years that would put me in a veritable Pre-existing Conditions Hall of Fame, with conditions including, but not limited, to:

spinal fusion failure

chronic neuropathic pain

degenerative disc disease in both my cervical and lumbar spine

renal cell carcinoma

benign prostatic hyperplasia

osteoporosis

angiomyolipoma on my left kidney

fibromyalgia

Sjogren’s Syndrome

Raynaud’s Phenomenon

small-fiber neuropathy

nodular regenerative hyperplasia (non-cirrhotic liver disease) with portal hypertension and obliterative portal venopathy; and

adhesive arachnoiditis. (This condition has no cure or successful treatment, and I am progressively losing the function of my right leg as it becomes paralyzed.)

… and counting

As though that weren’t enough, in 2013, I was diagnosed with what has become my primary health concern to-date: Lupus. This autoimmune disease creates autoantibodies that not only attack an invading infection, but also turn and continue to destroy healthy cells and organs, thus causing inflammation known as a Lupus flare. Having this disease means I must be checked frequently by my rheumatologist.

I live w/10+ #PreExistingConditions

I fight fatigue of #Lupus every day to get out of bed.

I survived cancer 2x.

I've walked the halls of Congress since 2017 meeting with your Reps to #ProtectOurCare

I'm fighting for my life & YOURS. Fight with me.

pic.twitter.com/v6DccSHVrs

— Peter Morley (@morethanmySLE) March 27, 2019

Lupus has a multitude of side effects, but for me, the most challenging is the chronic fatigue that I fight every day. It is a struggle and challenge to get out of bed every single day. I take 25 different medications daily, 38 yearly, and receive 12 life-saving infusions yearly for my Lupus.

Without access to insurance, I could not afford to pay for these medications and would lose access to my team of doctors. As a result, my disease would progress, and I could die.

Despite all my health challenges, I have flourished by the continuity of care provided to me by the 17 doctors I see on a monthly, quarterly, semi-annual and annual basis. Depending on the week, I spend about 60 to 70 percent of my waking moments in doctors’ offices. And as someone who has faced my own mortality on more than one occasion, I am grateful to be here. I know first-hand how essential it is to protect our care. I also realize that due to my advancing diagnoses I am thankful and appreciative for every day.

From private citizen to public advocate

I want you to know that I was a very private person prior to the 2016 election, but once President Trump was elected, I realized I could no longer keep quiet. I had to – in good conscience – do something to promote healthcare advocacy and empowerment. I recognized that meant I had to share the very personal details of my own story on social media. There are people in my life that were not aware I had kidney cancer or Lupus and have found out through Twitter. That’s how guarded I had been.

But listening to President Trump’s campaign rhetoric for 18 months caused me incredible stress and motivated me to speak my truth.

Before the Affordable Care Act guaranteed health insurance coverage to those with pre-existing conditions, many people like myself with Lupus and my multitude of diagnoses could be denied health insurance policies by many providers.

The ACA defined what benefits insurers would be required to include in order to enroll consumers in health insurance products (including Medicare and Medicaid). Before the ACA was passed, each insurance company had different restrictions as to what services its policies would cover, at what premium cost, and from what providers. Someone at each company would review each claim and decide what to pay.

Standardization of options was intended to reduce non-medical administrative costs and make insurance more affordable.

I think we can all agree that the ACA is not perfect and could greatly benefit from being enhanced. We need to return to the intent to cover 10 essential health benefits. And most importantly improve accessibility and affordability for everyone by lowering premiums, deductibles and drug costs.

In the last two years, I have traveled to DC 16 times to advocate not only for myself, but for thousands of people who have reached out to me through Twitter and my website, morethanmySLE.com.

My first trip to DC

I was inspired to make my first trip to Washington, D.C., on July 27, 2017 – the day of the Vote-a-Rama in the U.S. Senate for the “Skinny Repeal” of the ACA. I had made the trip by Amtrak to DC because I felt helpless sitting at home waiting for the outcome – which seemed likely to be that the ACA was doomed.

That day, I walked in and out of every Senate office I could and spoke with anyone who would listen – Democrat and Republican alike. The very last office I visited was Senator McCain’s office at around 5:15 p.m. Though he wasn’t at his office, I spoke with his Legislative Assistant and shared the story of my healthcare fight. When I told her I had Lupus, she burst into tears.

“I’m sorry,” she said. “My best friend worked here in D.C. and she suffers from Lupus as well and had to move to a climate more conducive to her Lupus. And you sharing your story just reminds me of her and her struggle.”

I had seen some emotional responses that day, but not one like this. I offered the aide information about a hotline that could help her friend get access to care and therapy wherever she was. And, before I left, I begged her to ask Senator McCain to reconsider and vote ‘no,’ explaining to her that were so many people who would suffer.

At the end of the day, I headed home, buoyed by my mission, and feeling I had done all I could. I woke up in the morning and somehow managed to get out of bed with my body ravaged by the energy I expended and the chronic fatigue from my Lupus had been triggered. I fully expected to turn on the TV and learn that the ACA had been repealed. Instead, I saw an image of John McCain giving the vote a thumb’s down and I couldn’t believe what I was looking at.

People began sharing their stories with me and asking me to represent them in D.C. I have made 15 trips to DC since July 2017. I’ve met with Representatives and Senators’ staffs from both parties to share these healthcare journeys because healthcare is a bipartisan issue.

Why I fight

People have told me because of all these healthcare repeal and sabotage efforts, that they feel alone, scared, and afraid, when they should be focusing their energy on their own well-being. The truth is, we all know someone who has been helped by the ACA.

I know firsthand that your health can change in an instant. That is why I fight for my life for those who will be left vulnerable if they lose their healthcare. I will continue to use my voice and encourage people to call their state and federal policy makers, because being proactive is empowering. No one should ever have to worry about having their healthcare taken away from them, simply because they became ill!

I lay awake at night worried about the more than 130 million Americans with pre-existing conditions who would lose their protections if the ACA is declared unconstitutional. Losing access to healthcare means different things to everyone. For me, it would mean not affording prescriptions, and infusions that are keeping me alive.

Due to the chronic fatigue that Lupus causes and my other diagnoses, I realize that I put my own health at great risk to travel and share these stories with members of Congress. I frequently schedule mass meetings because I never know if my visit will be the last time that I’m healthy enough to travel to DC.

But having the opportunity to speak to legislators where there might be one who will listen to me and could change their mind, is the reason I keep coming back. It energizes me and has given me a new sense of purpose in my life.

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judithcsmith · 5 years

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Not even the slightest pretense:

Since last night, my Twitter feed has been blowing up with people freaking out over the latest attack on justice, the rule of law and decency coming out of the Trump Administration.

Trump’s Department of Justice sent a brief to the 5th Federal Circuit Court stating that they’ve “changed their minds” about their position in the insane “Texas vs. Azar” lawsuit, and now agree with the plaintiffs in the case that the entire Patient Protection and Affordable Care Act should be ruled unconstitutional and repealed.

Before I get into the latest insanity, a quick review:

The case was originally brought by 20 Republican Attorneys General and Governors in February of last year, and the entire case is the height of chutzpah. It goes like this:

The Supreme Court ruled the Affordable Care Act’s individual mandate penalty is kosher because it’s a tax.

Congressional Republicans changed the penalty from $695 to $0 as part of their 2017 tax bill.

However, they didn’t technically repeal the coverage requirement itself – just the penalty.

Since the penalty is no longer enforceable, the entire ACA must be repealed.

That’s it. That’s literally their argument: “We partly sabotaged the law, therefore we get to sabotage all of it.”

The case has no legal merit

The legal merits of the case are nonexistent. That’s not just me saying that; virtually every legal and Constitutional expert across the political spectrum agrees. Even Case Western Reserve University law professor Jonathan Adler, one of the chief architects of the infamous King vs. Burwell lawsuit (which until now held the crown for the most absurd anti-ACA case to ever make it to the Supreme Court) wrote an article at Reason stating point blank that the legal argument is “brazen and audacious,” and that there is “no basis whatsoever for the states’ argument or Justice Department’s concession on severability.”

Frivolous or otherwise meritless lawsuits are filed all the time, but here’s where things became truly dangerous: Last June, the Trump Administration’s Department of Justice – whose job specifically includes defending federal laws whether they like those laws or not – deliberately threw the fight, announcing that they had no intention of defending the ACA. In fact, they went even further, announcing that they agreed with the plaintiffs for the most part.

As both Adler and University of Michigan law professor Nicholas Bagley noted, this represented a complete dereliction of duty on the part of the Justice Department. Even worse, it basically means the Trump Administration can’t be counted on to defend or enforce any law they don’t want to.

None of this stopped right-wing Judge Reed O’Connor from ruling in favor of the plaintiffs on December 14th (just ahead of the busiest day of the ACA Open Enrollment Period). He did indeed rule the entire ACA unconstitutional, but also stayed his decision pending the appeals process, which is where things stand today.

The next phase is for the case to be heard by the 5th Circuit Court of Appeals, which is expected to happen this July. Regardless of how they rule, the case will then be appealed to the Supreme Court by whoever loses. The Supreme Court will then either hear the case or refuse to do so.

Pretense of compassion?

Last June, when then-Attorney General Jeff Sessions decided to throw the fight, he partially hedged: He agreed with the plaintiffs that the ACA was unconstitutional, but disagreed with what the final ruling should be. While the plaintiffs wanted the entire law repealed, the DOJ asked that “only” the pre-existing condition protections be thrown out.

Yes, that’s right: The very same pre-existing condition protections which became the lynchpin of the entire Republican “repeal-and-replace” fiasco in 2017 … and then got their asses kicked over in the 2018 midterms, all while desperately by insisting that “no, really … we want to protect those with pre-existing conditions! Seriously, guys!”

Needless to say, the “lie-through-your-teeth” strategy failed for the most part, although there were exceptions like Missouri Attorney General Josh Hawley, who was one of the plaintiffs in the case and still managed to win his U.S. Senate race by running ads claiming he wanted to protect coverage of pre-existing conditions. Some people are … easily fooled, let’s just put it that way.

Then, of course, there was this:

Republicans will totally protect people with Pre-Existing Conditions, Democrats will not! Vote Republican.

— Donald J. Trump (@realDonaldTrump) October 24, 2018

I’ll be honest: I never quite understood Sessions’ thinking last June. Repealing ACA pre-existing condition protection requirements like guaranteed issue, community rating and essential health benefits would effectively destroy the ACA exchanges (as Trump insisted he was going to do) even if the other provisions stayed in place.

There’d be no way of calculating the financial subsidies, for instance, since the ACA formula bases those subsidies on the “benchmark Silver plan”… except the benchmark plans are priced on the assumption that everyone of the same age in the same location is priced identically. Once carriers go back to medical underwriting, everyone’s premium would be priced differently … and once the benefits included start being scattered all over the place, there’s no longer any consistent Actuarial Value for the plans anyway.

The only reason I can think for Sessions to take this stance is political: He may have noticed that besides the threat to pre-existing conditions from the 2017 repeal-and-replace debacle, the other issue which really caught people’s attention was the threat to Medicaid coverage. Perhaps he thought that the GOP could survive the midterms if they destroyed the private exchanges but not Medicaid expansion as well.

The veil has been lifted

In any event, even that last, minuscule fig leaf of having the slightest bit of compassion or thought for the health or well-being of Americans was torn off last night. As Bagley put it:

The Trump Administration Now Thinks the Entire ACA Should Fall

In a stunning, two-sentence letter submitted to the Fifth Circuit today, the Justice Department announced that it now thinks the entire Affordable Care Act should be enjoined. That’s an even more extreme position than the one it advanced at the district court in Texas v. Azar, when it argued that the court should “only” zero out the protections for people with preexisting conditions.

… Even apart from that, the sheer reckless irresponsibility is hard to overstate. The notion that you could gut the entire ACA and not wreak havoc on the lives of millions of people is insane. The Act is now part of the plumbing of the health-care system. Which means the Trump administration has now committed itself to a legal position that would inflict untold damage on the American public.

And for what? Every reputable commentator — on both the left and the right — thinks that Judge O’Connor’s decision invalidating the entire ACA is a joke. To my knowledge, not one has defended it. This is not a “reasonable minds can differ” sort of case. It is insanity in print.

How the GOP is reacting

The reactions from various Republican officials so far is pretty telling:

Steve Stivers, NRCC chair until recently, won’t comment on DOJ calling for ACA to be struck down, says he hasn’t seen it

— Peter Sullivan (@PeterSullivan4) March 26, 2019

Kevin McCarthy says to call his office for comment on the ACA case. Won’t comment at his press conference

— Peter Sullivan (@PeterSullivan4) March 26, 2019

… and so on. They can’t think of any coherent response, because, again, repealing the entire ACA – which would include killing off protections for those with pre-existing conditions, Medicaid expansion and so forth – is exactly what they’ve been trying to do for the past nine years. Since they can’t come right out and say that they agree with eliminating all of that, they can’t say much of anything.

My guess is that they’ll eventually go right back to gaslighting again in a few days, but the jig is up (and has been since the moment they passed the American Health Care Act back in May 2017).

A true train wreck for consumers …

As for what would happen if the ACA is eventually repealed (remember, the 5th Circuit won’t hear the case until July, and I’d imagine an appeal to SCOTUS could take as long as another six months after that?), here’s a quick reminder:

Medicaid expansion for over 16 million people across 36 states and DC: GONE.

ACA exchange subsidies for over 9 million people nationally: GONE.

Basic Health Plan coverage for over 800,000 people in Minnesota and New York: GONE.

Discrimination against coverage of 52–130 million* with pre-existing conditions: BACK.

Charging women more for the same policy simply because they’re women? BACK.

Charging older Americans 5 to 6 times as much as younger Americans? BACK.

Requirement that policies cover at least 60 percent of medical expenses: GONE.

Requirement that policies cover maternity care and mental health services: GONE.

Adult children being allowed to remain on their parents plans until age 26: GONE.

Annual and lifetime limits on healthcare coverage claims? BACK.

Requirement that policies cover preventative services at no out-of-pocket cost? GONE.

Tax credits to lower premiums for low- and moderate-income enrollees? GONE.

Financial help to reduce deductibles and co-pays for low-income enrollees? GONE.

A hard cap on out-of-pocket expenses? GONE.

The Medicare Part D “donut hole” being closed by the ACA? REOPENED.

* (depending on how you define “pre-existing conditions)

… but also for the entire healthcare system

…and that’s just for starters. After nine years, the Affordable Care Act has embedded itself into every facet of the American healthcare system. Even if everyone wanted to simply turn back the clock to 2009 (and God knows I don’t), it’s not something which could be done at the drop of a hat. It took nearly four years from the time the ACA was signed into law in March 2010 until the major ACA provisions went into effect, and with good reason.

The entire healthcare industry had to completely retool its billing practices, legal filings, actuarial tables, service contracts, marketing tactics and market position strategies to comply with the new law. Tearing all of that down – again, doing so with nothing whatsoever in place to pick up the pieces – would be a disaster of epic proportions. Utter chaos.

And utter chaos, of course, is exactly what Donald Trump – and, by their enabling and active assistance, the entire Republican Party – lives for.

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