US patients await Obamacare's fate

By Jessica Lussenhop
BBC News

image copyrightCourtesy DeLoach family
image captionDuncan DeLoach near the beginning of his treatment for testicular cancer, and 12 weeks later with his mother Cathy

As Republicans begin their repeal of the Affordable Care Act, patients weigh in on how the act has changed their medical care.

At first, 20-year-old Duncan DeLoach figured that the persistent, squeezing feeling he had at the base of his spine was just a pulled muscle.

But the pain intensified to the point where, on the evening of Thanksgiving 2014, DeLoach's mother Cathy found him collapsed on the floor of their Fairfax, Virginia, home. Not long after, he went in for a full-body MRI scan.

"I was in so much back pain they actually had to tie my legs together," says DeLoach. "I couldn't stay still."

The images showed ghostly white glimmers dotting his organs. Cathy DeLoach remembers thinking, "That looks like cancer."

Testicular cancer, it turned out, so advanced that it had already spread to Duncan's lymph nodes and liver, dotting his spine, lungs and skull.

image copyrightCourtesy DeLoach family
image captionDuncan DeLoach's MRI and PET scans, both showing metastasized cancer

To save Duncan's life, treatment began immediately - an orchiectomy to remove his right testicle, followed by 12 weeks of aggressive chemotherapy. There was no time to think about how the family would pay for the treatment, and luckily they didn't need to.

Duncan was covered under his father's health insurance, thanks to a provision in the Patient Protection and Affordable Care Act, better known as Obamacare.

Before the law passed in 2010, Duncan would have been kicked off his parent's plan at 18, since he wasn't a full-time student. His job with a landscaping company didn't offer healthcare coverage.

But since he became one of the estimated 5.7 million young adults able to remain on a parent's healthcare under the ACA, Duncan was able to access top-notch treatment thanks to his father's high-quality plan.

"In 15 days, we racked up $29,000 [in treatment costs]," recalls Cathy. "I stayed with him in the hospital and I had a lot of time to think about how grateful I was for the Affordable Care Act."

Both Duncan's mother and father say they are "fiscally conservative and socially liberal" - neither voted for Barack Obama in either 2008 or 2012, and Cathy said that when the ACA first passed she was not a fan. She thought it was too expensive and rammed through by Democrats.

But sitting by Duncan's beside, Cathy completely changed her mind. Not only was she grateful for the coverage her son received, she also became a fan of other effects of the ACA: coverage for birth control, cancer screenings and the requirement that businesses with 50 or more employees provide a healthcare plan.

image copyrightWin McNamee
image captionPresident Barack Obama signs the Patient Protection and Affordable Care Act into law in 2010

Now, she's terrified that Republicans, along with the new Trump administration, will take away her son's coverage and make it more difficult for him to be insured in the future.

The Patient Protection and Affordable Care Act has fundamentally changed the way many Americans access their healthcare. An estimated 20 million Americans have insurance under its provisions, and the number of uninsured has dropped to a historic low of 9%.

Three of the law's biggest tenets include requiring all Americans to have insurance or pay a penalty, widely expanding the number of people eligible for the government-funded Medicaid programme, and establishing online marketplaces, called exchanges, where patients can comparatively shop for plans.

The enormous package included many other provisions, such as making it illegal for patients with pre-existing conditions to be denied insurance, changing the ways doctors and hospitals are reimbursed by the federal government for care, and - as in Duncan's case - allowing children to stay on their parents' insurance until the age of 26.

While some Republicans have said they would like to keep the young people's provision, a repeal of the act could leave people like Duncan suddenly uninsured.

"I'm so furious about what's happening," says Cathy. "I'm in a position where I can afford it, but a lot of people are not.

"This really is something that could be so awful for so many people, and so many poor people, and it's wrong."

image copyrightAlex Wong
image captionHouse Speaker Paul Ryan discusses the Republican plan to repeal Obamacare under the new Trump administration

Shredding the Affordable Care Act was a key campaign promise made by Donald Trump. Now that Republicans control the House, Senate and the White House, plans are moving forward to dismantle Obama's signature policy. This week, Republicans in the House and Senate passed a budget resolution which set in motion a plan to repeal key parts of the law.

Republicans do not yet have a replacement plan. At his first news conference of the year, President-elect Trump vowed that he would have a new plan as soon as his pick for secretary of health and human services, Tom Price, is confirmed.

"Obamacare is a complete and total disaster," he told reporters. "We're going to have a healthcare that is far less expensive and far better."

It is still unclear how he plans to do this. However, some Americans are happy to see the ACA repealed - especially those who had negative healthcare experiences as a result of its enactment.

This group includes people like Bob Frank, who until 2010 had a plan he purchased as an individual from Blue Cross Blue Shield in Maryland.

Frank was in good health, and says he paid about $360 a month and had a $2,000 deductible - the amount he would pay out of pocket before insurance began to cover costs. But his policy was cancelled because it didn't cover all of the "essential" kinds of healthcare mandated by the ACA - in Frank's case, his plan had no coverage for pregnancy, maternal or paediatric care.

image copyrightGetty Images
image captionIn 2015, Obamacare opponents rallied outside the Supreme Court, which ultimately ruled the healthcare plan constitutional

As a 62-year-old single man with grown children, Frank says he had absolutely no need for these services, but was forced to pay for them - under the new, ACA-compliant plan he was offered, his deductible tripled and his premiums ticked up year after year.

"This then started a snowball of chaos," he says.

In 2014, after three hours of surgery to repair discs in his neck, Frank says he woke up to a shocking bit of news - while he was under anaesthesia, his policy had been cancelled. Frank's insurance company had confused his current and cancelled plan, and claimed he had not been paying his bills.

Without coverage, Frank's bill for the surgery came to $36,000. It took weeks to straighten out the confusion and get the surgery covered.

"The whole Affordable Care Act experience was terrible," he says. "We were told our premiums were going to drop, everybody's going to save $2,500 - this is all a racket.

"I'm in favour of them repealing it not because I want to spite President Obama. I want to repeal it because it doesn't work."

image copyrightGetty Images
image captionDemonstrators in Pennsylvania rallied against the repeal of the Affordable Care Act in December

Premiums for Obamacare plans have shot up around the country - an average of 22% nationwide - and insurance companies are abandoning what were supposed to be the competitive, cost-reducing exchanges. As a result, some people have lost their ACA plans and have fewer replacement options in some counties and states.

Beverly Hallberg, a 37-year-old small business owner in Washington DC, says she's seen her premiums triple in the last few years, and her deductible is sky high. Critics say that having impossibly high deductibles is almost the same as having no healthcare at all. The consequences are identical: people are reluctant to go to the doctor.

"I like to say, my health hasn't changed, yet my healthcare costs have. I don't think I went to the doctor once this year," says Hallberg.

image copyrightJoe Raedle
image captionA doctor in Florida examines a patient newly insured under the Affordable Care Act

Tracy Pate, a healthcare navigator with a non-profit called Project Access in north-eastern Tennessee, has heard plenty of complaints from her clients about the rising premium costs and narrowing plan options. In fact, she's experienced it herself - her monthly payment has gone from $50 a month to $200.

"But I'm still thankful I have health insurance - I couldn't get health insurance because I had pre-existing conditions," she says. "You may not like the cost of insurance, but that's just a small part of the pie known as Affordable Care Act."

Pate says that when she first started trying to sign people up for Obamacare, doors would close in her face - she serves a largely conservative community with no love for the outgoing president. But now that some years have passed and people have experienced the benefits of healthcare coverage, Pate says she no longer has to hit the streets - people are calling her to make appointments.

She says despite rate increases, she's still been able to steer her clients to affordable options using the healthcare exchange, and the majority of the clients pay less than $200 a month. The thought of all the people she's signed up losing their coverage overnight is "scary".

"How can you tell 22 million people, 'No, sorry, you can't go to your doctor tomorrow.'" she says.

image copyrightJoe Raedle
image captionOutreach efforts like this one in Miami, Florida, have helped sign up millions for Obamacare plans

Even families like the DeLoachs can sympathise with critiques of the ACA. While the law was vital to Duncan's care, they have an older daughter who recently bought a plan through an ACA exchange and was shocked by the cost.

Mike DeLoach, Duncan's father, says he has a fundamental problem with being required by the government to buy health insurance - a component necessary to fund the provisions he does like, including coverage for children up to 26 and the pre-existing condition rule.

Still, just a few days ago he wrote a letter to Republican House Speaker Paul Ryan, telling him Duncan's story and asking him to delay the repeal of Obamacare.

"The chance of somebody who doesn't have a college degree getting a job that's going to give them health insurance right now is slim. So I said, 'Why don't you hold off'.

"Fix that - then reform [ACA]."

As for Duncan, now 22, his doctor declared his cancer in remission in April 2015. He celebrated by moving to Utah for almost a year to work at a ski resort.

Now that he's back in Virginia and the reality of the election has set in, he says he is very concerned about his future. Doctors are keeping a close eye on a residual mass near one of his kidneys, and Duncan returns for blood tests and scans every few months.

"It's a pretty active worry," he says. "It costs a lot of money to go through what I have to go through."

Although he is not very politically active, Duncan says that in the future he will vote with one thing in mind.

"I'll vote for my health insurance. That's pretty much it."

image captionDuncan DeLoach, healthy and happy today, with his father Mike