• Why has health care in America become such a polarising issue? (SBS Dateline)
Following the weekend rejection of his healthcare plan, Donald Trump is licking his wounds after failing to deliver on his first big promise – to fix America’s health care system. Some are celebrating, but many Americans are now even more unsure about the future.
Airdate: 
Tuesday, March 28, 2017 - 21:30
Channel: 
SBS

Donald Trump’s plan to repeal one of former President Barack Obama’s biggest policy achievements is dead.

After framing much of his presidential campaign around repealing the Affordable Care Act, better known as Obamacare, Trump’s administration pulled their repeal bill after realising they did not have the numbers to get it passed.

This week Dateline meets a handful of Americans with serious health concerns – whose futures are arguably more uncertain, after the dumping of President Trump’s replacement plan, nicknamed Trumpcare.

For Seth Blackburn and his family, having affordable health insurance is literally a matter of life and death.

“Is my child going to die? What does this mean? That's probably the biggest thought,” he tells Dateline reporter Dean Cornish, at his local hospital in Louisiana.

His daughter Laina was diagnosed with Leukaemia when she was one and is currently undergoing chemotherapy treatment. Without some legal protections provide by Obamacare, Seth and his wife April were worried about how they’d pay for Laina’s million dollar treatment under a Trump administration.

Currently Laina’s care is funded by the government’s Medicaid program for low-income earners. But under Trumpcare, that program would have been drastically wound back, affecting millions of people across the country.

“Finding a company that will take Laina on for health care would be very difficult,” says April.

“On top of that finding one… we could afford would be almost impossible.”

With the death of Trumpcare, the Blackburns enjoy a reprieve, for now. The problem is, Obamacare is not perfect, and now that it’s being overseen by a President that detests it, who knows what other plans may arise?

For years, this family, along with many others, has found itself stuck in the middle of a partisan battle over health care – which has seen the issue politicised by both Republicans and Democrats.

For them this issue is personal, not an abstract political debate.

In 2010, President Barack Obama signed Obamacare into law. It signalled a dramatic shift in the USA’s approach to health care – a socialisation of the system, which saw an extra 20 million Americans take up health insurance for the first time, and allowed families like the Blackburns to receive guaranteed medical care.

The uninsured rate significantly declined, and power was moved from insurance companies to the consumer, as insurers were now required to accept all applicants and charge standardised rates, regardless of pre-existing health conditions.

Barack Obama’s signature legislation became an object of loathing for the Republican Party, and repealing it has been a key part of the conservative platform since Obamacare’s inception exactly seven years ago.

But while Obama’s health care reforms have made insurance a realistic possibility for millions of Americans, like the Blackburns, it hasn’t helped everyone.

For many people in the poorest regions of the richest country in the world, health care remains a pipe dream.

“The Affordable Care Act has done little for this area, because the Affordable Care Act has not been affordable, as you would think,” says Teresa Gardner Tyson, executive director of the Health Wagon – a mobile health service in rural Virginia, in the country’s southeast.

The non-profit has been providing check-ups and medicine to people from Virginia’s Appalachian Mountains for almost four decades. They see up to 10,000 patients a year, treating everything from colds and sore throats, to immunisations and dental services, all from a simple white van.

Teresa’s co-driver in the Health Wagon is Paula E.S. Hill. The two women have been friends since high school, and they now work together providing much needed health care in this struggling region.

Paula holds strong views about the way politicians have discussed the issue over the past few years.

“It's disgraceful the way that we are handling our health care system here in America,” she says. “That it's becoming a privilege for the very elite. We are a country that’s run not by the majority rules, not by democracy anymore, but it's run by the almighty dollar.”

On the day Dateline travelled with the Health Wagon, they had an appointment with Julie – a woman they’ve been seeing for three years – who suffers from atrial fibrillation. Because of her condition she cannot work, which means she also cannot afford health insurance.

“This was really the only place I could come without having any insurance,” she said.

In these regions, home-grown solutions like the Health Wagon may be the only option people have for getting a basic health check-up.

Without it, William Orender believes he’d be dead.

Suffering from chronic arthritis, he requires US$1200 each month to treat his symptoms, but has no health insurance or a fixed income to pay for check-ups. He lives in a campervan, unable to finish construction on his half-built home, relying on local wildlife for much of his food.

For William, the post-Obamacare affordability of health care in the United States hasn’t had any effect on his life.

Partly for this reason, he was one of 80 per cent of people in his county to vote for Donald Trump. Many of them wanted to see Obamacare repealed and replaced – something that is now unlikely in the foreseeable future.

For others, the death of Trumpcare only brings more uncertainty. 25-year-old Haley Saucier, from New Orleans, suffers from polysaccharide immune deficiency, a condition that killed her brother. Haley’s medication costs US$10,000 a week and without it, she would die. Currently this cost is covered by her father’s health insurance, but once she turns 26 she will have to seek out her own health insurance plan.

“I’m really stressed out a lot,” she says. “I keep applying for jobs with benefits, but the economy isn’t great.”

Now in some ways Haley’s future is more precarious. Will Obamacare be left to “explode” as President Trump has suggested? Will there be other smaller attempts to change it that will affect people like Haley? No one knows, and when you’re sick, you worry.

This failure to deliver on one if his biggest campaign promises, is the first major policy failure of Trump’s presidency. It’s also a signal that the Republican-controlled Congress will not be as easy to manage as Trump may have thought after the election.

“We were very close, but when you get no votes from the other side, meaning the Democrats, it’s really a difficult situation,” Trump said after the vote.

For Trump, this is politics. For those relying on reliable health care to stay alive, the stakes are much higher.

Watch the full story at the top of the page.

More

What Trumpcare’s defeat says about the new president
Failing to repeal Obamacare is President Trump’s first major policy defeat and reveals the cynicism of his administration, writes Dean Cornish. But does it make the future of health care in America any more certain?
Living with a sick child in America; "They are choosing money over saving lives"
My daughter has Leukaemia. I am scared the US government will stop covering her medical care.
Obamacare isn't safe yet
Even after the failure of the Republicans’ health-care bill, there are still significant ways Trump and his allies can roll back the Affordable Care Act’s provisions.
How right-wing media saved Obamacare
Years of misleading coverage left viewers so misinformed that many were shocked when confronted with the actual costs of repeal.

Credits

Reporter: Dean Cornish

Producer: Ronan Sharkey

Camera: Dean Cornish / Ronan Sharkey

Associate Producer: Ana Maria Quinn

Editor: Simon Phegan

Transcript

This beaten up old motor home has done a lot of miles through Virginia's Appalachian mountains, behind the wheel, two local gals who have been friends since high school.

REPORTER:  So where are we heading today?

PAULA E. S. HILL, HEALTH WAGON CLINICAL DIRECTOR:  We are heading down to Coeburn, Virginia. It is actually mine and Theresa's hometown.

Paula Hill and Theresa Gardner-Tyson and their free Health Wagon are seen as saviours around these struggling parts.

REPORTER:  She goes well in the mountains this thing.

THERESA GARDNER-TYSON:  She is just a little bit noisy but she can still climb a mountain with the best of them.

PAULA HILL:  And Theresa needs to tell you the story about Sister Bernie, that was climbing a mountain and back during the coal mining strikes, she actually was arrested for impeding traffic.

REPORTER:  Oh really!

It was Sister Bernie established the Health Wagon decades ago.

THERESA GARDNER-TYSON: Can you imagine the headlines? And I think it made the New York Times. You know, a Catholic nun is delivering free medicine care, is arrested.

In one of the poorest parts of the richest country in the world, even basic healthcare is out of reach. For many, the Health Wagon is a last resort.

REPORTER:  So Theresa, in 24 years, have you seen the need for a free clinic-type service increase or decrease?

THERESA GARDNER-TYSON: Certainly the need has increased. We are seeing record numbers of patients. For the first time ever really in our history, we have had to actually put patients on a waiting list.

JULIE:  Cardiology and I had had a stroke.

President Trump's healthcare reform was less than three weeks old when he pulled it last weekend. It was a short, sharp withdrawal of the promises that he made to people like Julie here.

JULIE:  I had a stroke and had a lot of appointments and didn't have insurance so this was really the only place that you could come without having any insurance that would see you.

Because of her condition, Julie can't work. So she can't afford health insurance and unlike Australia's free public healthcare system, in America, if you don't have some kind of health insurance, you have to pay.

REPORTER:  If this place didn't exist, what would your options be?

JULIE:  I probably wouldn't have any healthcare.

Barack Obama signed the Affordable Care Act in 2010, better known as Obamacare, it made it illegal for insurance companies to turn people away. 20 million Americans could afford health insurance for the first time in their lives, but, not around here.

THERESA GARDNER-TYSON:  The majority of the individuals that come to us do not have any form of insurance. The Affordable Care Act did little for this area because the Affordable Care Act has not been affordable as you would think.

Donald Trump won a resounding 79% victory in this country, largely due to the failings of Obamacare. One of the biggest complaints is that it makes health insurance compulsory and around here, people don't like the government telling them what to do. 56-year-old William is a Trump man.

WILLIAM ORENDER, HEALTH WAGON PATIENT:  Like I said, the Lord ain’t gonna put no more on me than he knows you can take. I’m maxed out.

PAULA HILL:  I know you are not complaining but we want to help you. We don't want to see you live like that, that’s the issue.

WILLIAM ORENDER:  I don’t want to live like that either, but you know what…When the Lord deals you out a hand like that, you just gotta take it.

PAULA HILL: Yeah but that’s what God gives people knowledge for medicines and stuff too.

WILLIAM ORENDER:  I tell you what, you are doing a wonderful job, I mean a wonderful job.

PAULA HILL:  Why, thank you.

PAULA HILL:  It is disgraceful the way we are handling our healthcare system here in America. It is becoming a privilege for the very elite. We are a country run not by majority rules and not by democracy anymore. It is run by the almighty dollar.

You have a blessed day. Good to meet you.

WILLIAM ORENDER:  My New Year's resolution, I had two or three choices. Either die or go to a nursing home or come here and I chose right here and it was the best choice I ever made.

REPORTER:   And if there wasn't this service, what would your healthcare options be?

WILLIAM ORENDER:  I'd be dead. I would be dead. I would be done and dead. I had no insurance.

REPORTER:  Do you think President Trump will be able to fix healthcare?

WILLIAM ORENDER: Your guess is as good as mine. I don’t know but I am hoping for the best because somebody definitely needs to do something.

For a country tagged as the most powerful in the world, a lot of people seem incredibly vulnerable here. It has been estimated a third of Americans don't seek medical treatment because of the high cost. William, who I met at the Health Wagon, hopes that President Trump will have something in store to make his life better.

WILLIAM ORENDER: That's my camper right there. That's where I am living, how about that?

REPORTER:  That's where you are living?

WILLIAM ORENDER:  Yeah. It ain’t bad. It is like camping out 24 hours a day.

William once ran a successful tree felling company, but arthritis struck. Now, unable to work, and with no financial back stop, his dream house sits unfinished.

REPORTER:  So you haven't been able to do anything?

WILLIAM ORENDER:  No.

REPORTER:  Why?

WILLIAM ORENDER: Well I ain’t able, if I was able, if I was able to work, I would be working and making money to bring in to get this thing here built, but financially-wise, I just didn't have it.

William's arthritis medication would cost $1200 a month, but he gets it free from the Health Wagon. On zero income, he gets a lot of his food for free from the forest.

REPORTER:  What else can you eat from around here?

WILLIAM ORENDER:  Oh, wild pig, deer. You got elk. You got grouse, pheasant, squirrel, rabbits. You got all kinds of critters. Yeah, good old roman noodles.

REPORTER:  Yeah and that corn, and the turkeys will like that?

WILLIAM ORENDER: It'll bring in something, I don’t know what but it will bring in something.

REPORTER:  Dinner maybe?

WILLIAM ORENDER:  Hey, it could be.

REPORTER:  What would you like to see President Trump do?

WILLIAM ORENDER: Take Obamacare and throw it out the window and flush it down the commode. It needs to go quick.

Now, that won't be happening. Obamacare is for the foreseeable future here to stay. Successfully dumping Obamacare was the first major test of President Trump's authority. This failure calls into question his ability to govern. But, it has been threatening to break the country the further apart for weeks.

APRIL BLACKBURN:  Yeah, she's very used to hospital visits. She gets kind of scared any time she sees somebody in scrubs unless it is somebody that she recognises.

In Louisiana, Laina is in the middle of chemotherapy treatment for leukaemia.

APRIL BLACKBURN:  She was diagnosed when she was one, so this is pretty much all she has ever known.

SETH BLACKBURN, LAINA’S DAD:  What does this mean? Is my child going to die? That is probably the biggest one, of course. Am I going to lose my child to this illness? Depression, of course. When it settles in to you that nothing's gonna be the same now.

Under Trump's plan for America dubbed Trumpcare, Laina's parents had even more to worry about, like going bankrupt if they have to pay for her treatment - estimated at a million dollars. Right now the Blackburns don't pay because Laina comes under the government's Medicaid program for low-income earners. To keep family income low and to keep Laina on government Medicaid, only Seth works.

SETH BLACKBURN:   So we didn't like that but it was just a financial reality for us and we thought it would be a short-term solution.

Under Trumpcare Medicaid would have been drastically cut. 14 million people were predicted to lose out, including the Blackburns and not only would they have to pay for Laina's treatment, they could have also found their daughter uninsurable in the future.

APRIL BLACKBURN:  If pre-existing conditions clause goes away then finding a company that will take Laina on for healthcare would be very difficult and on top of that, finding one that would take her on that we could afford would be almost impossible.

Before Obamacare, people like Laina would struggle to renew their insurance as they got older because companies could and would refuse coverage, saying they had a pre-existing condition. Obamacare made that practice illegal. Who knew what would have happened under Trumpcare if it had passed.

As the fear of Trumpcare took hold, lots of people have been getting politically active, including the Blackburns. They decided to front up to Louisiana's Republican senator, Bill Cassidy, at a recent up to hall meeting.

APRIL BLACKBURN:  We want to go to make a face-to-face appearance especially with Laina with us. When you can see a sick child, it is different than hearing about, "Your plan is not great for everybody" versus, "This plan is bad for you for this kid right here in front of you now." Just see what he says.

Baton Rouge is a largely Republican voting area. It's friendly political territory for the senator but a lot of people here, like the Blackburns, want Senator Cassidy to talk about healthcare. His minders are banning questions on the topic. So, next to the stage afterwards, April grabs her chance.

SENATOR BILL CASSIDY: How is your daughter?

APRIL BLACKBURN:  She is doing good on chemo. She has about a year of treatment left but we are very concerned about what will happen once the ACA has gone and pre-existing conditions if we are going to go bankrupt.

SENATOR BILL CASSIDY:  First, first, if you have any case work for it, let us know. But I am a doctor who worked in a charity hospital system for 25 years. You don't have to tell me as a physician who worked in the public hospital system for 25 years, that is my goal. I am trying to help families put up a tougher time with a $6,000 deductible. She looks beautiful. She has her hair. Look at those big brown eyes. Thank you for your question.

The Blackburns got their FaceTime with the senator, but did they get any answers that would reassure them?

APRIL BLACKBURN:  I feel like we got a pat, "trust me I am a doctor" response. I wanted details of how exactly are you going to protect people with pre-existing conditions without the ACA? It was just a, "It will happen. It is fine." So, I'm disappointed with the answer.

SETH BLACKBURN:  It is the first time in my life where I really am kind of afraid for what kind of future my children can have in this country, especially my daughter because decisions being made right now could threaten the security of her health. That goes beyond college, beyond careers, beyond financial success, that’s her very life.

LAINA BLACKBURN:  I'll slide down and get him.

APRIL BLACKBURN:  Good job.

Seth is far from alone. Two months after Trump's inauguration and Obamacare is more popular than ever. People are fighting to keep it which is irritating Trump supporters on local radio.

RADIO:  These protesters are acting all big and tough out there with their signs and their attitudes and their chants. "He is my friend." Then a truck comes along ka-boom and they're a screamin' and we area a smilen'.

Republican Senator Bill Cassidy also went to New Orleans flying the flag against Obamacare but these protesters weren't having a bar of it. It says something about the nature of American politics right now that major healthcare legislation can be drafted, introduced and dumped within a month. The Republican Party has conceded the Town Hall protests have had an impact.

WOMAN:  If you want to disagree and you don’t have a say, stand up and turn your back on the senator.

REPORTER:  Tell me about your sign here?

PROTESTER:  When I was self-employed I had pre-existing conditions that before ACA were not covered. My medications got to a point where I couldn't afford to take them and without them I would have died. Obamacare covered my pre-existing conditions and I have been healthy ever since.

CROWD:  Where is he? Where is he?

The venue was nowhere near big enough to hold all the angry locals. To make matters worse, Senator Cassidy was late.

MAN:  We have been here five hours! I am tired.

WOMAN:  My daughter has cancer. She's 23 years old. She believes that no-one cares, especially not Senator Cassidy.

WOMAN:  I am a fourth year medical student. I will be graduating this year and starting my residency. Since the Affordable Care Act and Medcaide expansion, it is simple we are better able to take care of our patients.

MOTHER:  My uninsurable child, standing in front of you and you smile.

SENATOR BILL CASSIDY: I apologise, I was looking at the tornado damage in New Orleans. Now under our plan you can actually end up with more people insured than under the ACA.

WOMAN:  Which is more restrictive than Obamacare.

MAN:  A Volkwagen replacing your Cadillac. That’s what you got.

CROWD:  Free your child, free your child!

Hundreds of people who didn't get in stayed outside and stayed fired up.

HAYLEY SAUCIER: I have a condition called a polysaccharide immune deficiency, that is chronic. There is no cure. It falls under the orphan drug act and without treatment, it is fatal. I require infusions of a medication called Hizentra once a week. Two months without it and I die. Without the ACA, no insurance will cover me because my medication is $10,000 a week, $40,000 a month.

Impossible medical bills are defining American story. I met up again with Hayley whose weekly medication costs $10,000. She was going ready for a mardi gras parade with her boyfriend, Grant.

HAYLEY SAUCIER:  So right now I am working on three goddess head pieces for the REX Parade. They're going to be on a float with a bunch of other like ancient Greek gods and goddesses because it is carnival, leading up to mardi gras. This is a really traditional motif and it is one of the things that I get commissioned for a lot.

REPORTER:  So this is a good place to be a costume maker yeah?

HAYLEY SAUCIER:  Oh definitely, because we do stuff year round.

REPORTER:  So, you guys have just moved in together?

GRANT, BOYFRIEND:  Yeah.

REPORTER:  And how is that going?

GRANT:  It’s going pretty well, except for the animals, but everything else is pretty good.

Hayley's also constantly thinking about what it costs to stay alive.

HAYLEY SAUCIER:  My medication is called Hizentra. I can actually show it to you. It's in the fridge. This is 9 grams and so 50mms and it cost $10,000. This is 10 grand in my hand right now. Every Tuesday I infuse 9 grams of this sub cutaneously so it's four needles in one of my hips and it's currently free from my dad's insurance.

Under Obamacare if you are under 26 like Hayley you're covered by your parents' health insurance. But Hayley turns 26 in a couple of months' time and under Trumpcare she would have been unlikely to find a policy she could afford.

HAYLEY SAUCIER:  My brother actually died from this condition. Luckily, my little sister doesn't have it. He was diagnosed later looking at my symptoms and looking at how he died. I didn't really know him. He was 12 years older than me. So he was 14 when he died and I was two. Yeah.

Even though Trumpcare is dead, Hayley's future healthcare is still precarious. Obamacare may be here to stay, but it is not perfect and now it will be overseen by a president who detests it. Could things get worse?

REPORTER:  So how do you live with that kind of concern?

HAYLEY SAUCIER:  Ah, I am really stressed out a lot. I keep applying for jobs with benefits, but the economy isn't great. Yeah, I just keep putting in applications and crossing my fingers.

GRANT:  Yeah, we are just kind of working that one day at a time right now. I mean, I have definitely thought about it and I have some ideas of what we would do if worst-case scenarios happen. Maybe she didn't have insurance, but, yeah, just try to stay healthy, trying to stay sane. It's stressful, but it's worth it, you know.

It's carnival time in New Orleans, a time when the city doesn't seem to have a care in the world. But if you have got a potentially life-threatening condition, you live with a constant level of worry. That's where Hayley is at.

HAYLEY SAUCIER:  It is just life for me and it is sort of weird kind of living with all of those limitations. I think I deal with it by taking a little more risks than I should.

Trumpcare may be dead, a victory for the millions of people but Hayley's unease speaks for a lot of Americans right now.

REPORTER:  So one day at a time?

HAYLEY SAUCIER:  I deal with it by not dealing with it. I just kind of focus on going to work and taking care of the house and hanging out with my dog and working on crafts. The more mentally occupied I am in other spaces, the easier it is for me to get through my day.

On his first big promise, Donald Trump has failed. Which begs the question for many, besides promises, what else has he got? As the new Administration rolls into an even more uncertain future, still with only the promise of shiny baubles and prosperity for all, many people are grasping, wondering and afraid.

 

reporter  
dean cornish

story producer
ronan sharkey

camera
dean cornish & ronan sharkey

associate producer
ana maria quinn

story editor
simon phegan

editors
micah mcgown
simon phegan
david potts

28th March 2017