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CLOSE

On Thursday afternoon, Melissa Nance had a question for Sens. Lamar Alexander and Bob Corker and others who voted to repeal the Affordable Care Act without first devising a replacement.

"I want Sens. Alexander and Corker to tell me what I and the 42 percent of males and 38 percent of females diagnosed with cancer sometime in our lifetime are supposed to do," Nance said.

Nance, who has leukemia and is at risk for other cancers, and other cancer patients and survivors spoke at a noon rally outside Alexander's downtown Knoxville office, before going inside to deliver a petition against the repeal.

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Signs are held during a rally asking Sen. Lamar Alexander to stop his rush to repeal the Affordable Care Act held outside his office in downtown Knoxville on Thursday, Jan. 19, 2017. (Photo: BRIANNA PACIORKA/NEWS SENTINEL)

A Knoxville-area native, University of Tennessee graduate and director of a local nonprofit, Nance said she was unable to get insurance prior to the Affordable Care Act because of a pre-existing condition. A year after she bought an ACA Marketplace policy, she said, she was diagnosed with leukemia.

"One cancer treatment can cost as much as $11,000 - and I had 18 treatments," Nance said. "That's not something I could afford to pay for without the ACA."

Critics of the sweeping health care reform argue that high deductibles and premiums - which rose 63 percent in Tennessee this year - are unaffordable for around 15 percent of Tennessee ACA customers who don't receive government subsidies to help them pay for insurance.

They point to shrinking networks in states such as Tennessee, where many counties now have only one insurer option for a Marketplace policy.

But University of Tennessee doctoral student Jessica Hendricks, who had non-Hodgkins lymphoma at age 16, remembers sending out sheaves of insurance applications after she completed her undergraduate degree at age 23.

"Denied, denied, denied ... I was denied over and over and over," Hendricks said. "I couldn't believe it was possible, let alone legal. ... That was a hard time for me."

Hendricks also got an insurance policy through the ACA. Before pursuing her graduate degree in biochemistry and cellular and molecular biology, she worked at the national Centers for Disease Control and Prevention, developing tests to screen newborns for "diseases that are deadly to those children but treatable if they're detected," she said.

Before the ACA required insurers to offer policies to everyone, those "preexisting conditions," diagnosed shortly after birth, could set someone up for a lifetime of being uninsured, she said. Sometimes, insurers would offer policies that excluded pre-existing conditions but still were cost-prohibitive for most people, she said.

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Signs are held during a rally asking Sen. Lamar Alexander to stop his rush to repeal the Affordable Care Act held outside his office in downtown Knoxville on Thursday, Jan. 19, 2017. (Photo: BRIANNA PACIORKA/NEWS SENTINEL)

All told, four survivors spoke and about 20 stood in support, most holding signs with messages like "Stop Repeal" and "#carenotchaos." The group supporting the ACA was joined by some environmental activists who already were downtown protesting President-elect Donald Trump's cabinet pick for administrator of the Environmental Protection Agency, Scott Pruitt, as well as lax penalties for corporations that pollute water and air, activists said.

Alexander said Wednesday during the Senate health committee's nomination hearing for Tom Price to lead the U.S. Department of Health and Human Services that he has a three-part plan to "simultaneously and concurrently" repeal and replace the ACA.

"If your local bridge were 'very near collapse,' the first thing you would do is send in a rescue crew to repair it temporarily so no one else is hurt," Alexander said. "Then you would build a better bridge, or more accurately, many bridges, to replace the old bridge. Finally, when the new bridges are finished you would close the old bridge.

"We will first send in a rescue crew to repair temporarily a collapsing health-care market so no one else is hurt. Then, step by step, we will build better systems that give Americans access to truly affordable health care. We will do this by moving health-care decisions out of Washington, D.C., and back to states and patients. Finally, when our reforms become concrete, practical alternatives, we will repeal the remaining parts of Obamacare in order to repair the damage it has caused Americans."

Yet Nance and others at the rally worried that, left up to insurers and state governments, many of the protections granted by the ACA would cease to exist. Besides pre-existing conditions, these included laws against lifetime "caps" on what insurance would pay toward medical costs, the ability to add young adults up to age 26 to parents' policies, and the requirement that policies include "minimum essential benefits" such as preventive care with a co-pay and equal coverage of mental-health and substance abuse treatments.

"I direct a nonprofit, I serve on boards, I volunteer in the community," Nance said. "I want to be able to live so that I can continue to serve our community. I'm not asking for a handout. I just want the opportunity to purchase health insurance."

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Melissa Nance speaks during a rally asking Sen. Lamar Alexander to stop his rush to repeal the Affordable Care Act held outside his office in downtown Knoxville on Thursday, Jan. 19, 2017. (Photo: BRIANNA PACIORKA/NEWS SENTINEL)

As deadline looms, insurance enrollment help offered

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Obamacare activity remains constant amid repeal rhetoric in Tennessee

With Obamacare repeal, devil is in the details for Nashville companies

Obamacare's Tennessee inroads tenuous under Trump

Read or Share this story: http://knoxne.ws/2jE57Y4

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Cancer patients, survivors protest ACA repeal

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CLOSE On Thursday afternoon, Melissa Nance had a question for Sens. Lamar Alexander and Bob Corker and others who voted to repeal the Affordable Care Act without first devising a replacement. "I want Sens. Alexander and Corker to tell me what I and the 42 percent of males and 38 percent of females diagnosed with cancer sometime in our lifetime are supposed to do," Nance said.

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Principle ethics are the fundamental beliefs of what you personally believe is right and wrong and consequence ethics are the morality of the actions taken after

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A Huffington Post investigation reveals that the "Affordable Care Act," it turns out, is exactly the same thing as "Obamacare." They aren't two different things. There is only one, believe it or not.

We've triple-checked this. Congressional observers who witnessed the passage of the legislation say that the Affordable Care Act was enacted on March 20, 2010, after a lengthy legislative battle. We've looked into these claims, and they check out. However, it should be noted that the law's most fervent supporter also happens to be the man who signed it into law ― President Barack Obama. And, at some point during the hullabaloo that presaged its enactment, the Affordable Care Act also became known as Obamacare.

But here's the rub: At some point its enactment, there arose a notion that "the Affordable Care Act" and "Obamacare" were two different things entirely. This has sowed confusion ever since.

You may have even encountered this confusion for yourself.

Has this ever happened to you? It's a month after the election, and you're having a conversation with a friend or a loved one, when all of the sudden, they say something like, "Now that the election is over, I'm very excited that they'll finally repeal Obamacare."

There's a pause, and you do something of a double-take, because as far as you could remember, your confidant was actually receiving health care coverage from an Obamacare exchange. Confused, you stutter, "But Damocles!" ― your friend in this scenario is named "Damocles" ― "You get your health insurance through Obamacare."

"Not at all, Phaedra," he replies. (For some reason you are named "Phaedra," just go with it.) "I get my health care through the Affordable Care Act."

If this sounds familiar, you're not alone. As the inauguration of President-elect Donald Trump nears, and talk on Capitol Hill turns to how and when the GOP-controlled Congress will repeal the Affordable Care Act, and when and with what they shall replace it, we return to a discussion of branding, and whether what people really don't like about Obamacare is just the part with "Obama."

This is amazing. From a Dr's office in Rocky River OH, a suburb of Cleveland: https://t.co/hFH6S2c8g7
- Alec MacGillis (@AlecMacGillis) January 4, 2017

@AlecMacGillis Old white guy in Dr.'s waiting room, sitting next to me:"they said Obamacare would be repealed, not the Affordable Care Act!"
- JKo (@suburbangrouse) January 4, 2017

Fun fact, though: They are.

And the White House did itself a number of disservices, first by not being straight with people about how altering the health insurance marketplace was going to cause noticeable consumer disruption (this earned President Barack Obama a "lie of the year" distinction from Politifact), and then by not launching the exchanges with a website that actually ― you know ―

Through it all, of course, the Affordable Care Act was hurt by the fact that a much larger universe of people have opinions about the health care law than actually use it to obtain health care coverage.

The media hasn't helped matters much, either. We've more or less used the shorthand "Obamacare" since it was coined by the law's opponents. We didn't do this because we were making some kind of judgment about the law itself. We did this because we in the media love shortcuts (easier to get "Obamacare" in a tweet than "Patient Protection and Affordable Care Act") and nicknames (during primary season, we would be lost without our ability to refer to "New Hampshire" as "the Granite State" on second mention).

But for a long time, whenever we spoke about Obamacare, we were using a term that was intended to be a pejorative ― at least until Obama "reclaimed" the name for himself, telling people , " I know people call this law Obamacare and that's OK. Because I do care."

Which is all well and good, but it probably doesn't really help people understand that "Obamacare" is the same thing as "The Affordable Care Act."

It's been a longstanding confusion that's been noticed by pollsters over the years. And when you put the word "Obama" into the mix, it really heats up the passions.

They're two different names for one law, but a new poll shows more Americans oppose the president's signature health care law when it has his name attached than when it's called the official name.

According to a new CNBC poll that surveyed two different groups, 46% of the group that was asked about "Obamacare" was opposed to the law, while 37% of the group asked about the "Affordable Care Act" was opposed to the law.

At the same time, more people support "Obamacare" (29%) than those who support ACA (22%.) In other words, having "Obama" in the name "raises the positives and the negatives," as CNBC put it .

The Atlantic's Olga Khazan has noted how deeply this phenomenon has permeated the discourse around the Affordable Care Act. She says it explains " why some Pennsylvanians told me they want subsidies for health insurance, just not subsidies."

It's a kind of reverse "halo effect," says Scott Rick, an associate professor of marketing at the University of Michigan. "If you already like someone, anything new they do gets the benefit of the doubt. If you already dislike someone, everything they subsequently touch is tainted. For many conservatives, Obamacare is the fruit of a poisonous tree."

Some states have found the label so toxic that, in an effort to boost enrollment, they hid it. Kentucky expanded Medicaid under Obamacare, but the state called it "Kentucky Connect" (portmanteau'd to "Kynect") because, , "I don't poll that well in Kentucky."

According to the survey, Kynect was much, much more popular among respondents than Obamacare was, no matter how you sliced it. Even Republicans, who expressed their raging disapproval of Obamacare by a gap of 83 percent to 10 percent, only mildly disapproved of Kynect ― to the tune of 32 percent to 16 percent.

That's pretty amazing, considering "Kynect" and "Obamacare" are the same thing ― and also the same thing as "the Affordable Care Act."

In fact, if you are covered by any of the following ...

Covered California

Connect For Health Colorado

Access Health CT

DC Health Link

Your Health Idaho

Maryland Health Connection

Health Connector (Massachusetts)

MNsure

New York State Of Health

HealthSource RI

Vermont Health Connect

Washington Healthplanfinder

... then guess what? Those are all Obamacare, too! Plus: They are the Affordable Care Act.

You shouldn't feel too bad about being confused over this. I mean, the state of Washington named its exchange, "Washington Healthplanfinder."

Come on, Evergreen State, you're better than that.

In the end, it's possible that "The Affordable Care Act" was always going to become more popularly known as "Obamacare." It was, after all, the Democrats' first major attempt to reform the health care system since the 1990s, when that effort became known as "Hillarycare" very early in the game. Former Massachusetts Gov. Mitt Romney's "Commonwealth Care" is now basically known as "RomneyCare." And whatever Trump does could very well end up being popularized as "TrumpCare" ― even if all he does is make a few cosmetic tweaks, and assume credit for Obama's signature law.

True enough. But just imagine how poorly Obamacare would poll if it had been named, "The We Made A Bunch Of Sweetheart Deals With Insurance Companies And Also A Bunch Of Other Health Industry Interests And Their Lobbyists Act."

Jason Linkins edits "Eat The Press" for The Huffington Post and co-hosts the HuffPost Politics podcast "So, That Happened." Subscribe here, and listen to the latest episode below.

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News Flash! Obamacare And The Affordable Care Act Are The Same Thing.

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A Huffington Post investigation reveals that the "Affordable Care Act," it turns out, is exactly the same thing as "Obamacare." They aren't two different things. There is only one, believe it or not. We've triple-checked this. Congressional observers who witnessed the passage of the legislation say that the Affordable Care Act was enacted on March 20, 2010, after a lengthy legislative battle.

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As the U.S. Congress moves ahead with repealing the Affordable Care Act, some Republican governors are reaching out to lawmakers and urging caution.

In recent comments and letters to Republican House leaders who sought input from state officials on potential health-system changes, several governors have voiced concerns about the effects of abruptly scrapping the 2010 law. Nine governors and two lieutenant governors attended a Thursday roundtable held by Senate Finance Committee Republicans on the future of the health law's...

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Republican Governors Warn Lawmakers About Repeal of Affordable Care Act

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As the U.S. Congress moves ahead with repealing the Affordable Care Act, some Republican governors are reaching out to lawmakers and urging caution. In recent comments and letters to Republican House leaders who sought input from state officials on potential health-system changes, several governors have voiced concerns about the effects of abruptly scrapping the 2010 law.

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The challenges Trump and the GOP face with repealing Obamacare

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Republicans have promised to repeal and replace the Affordable Care Act pretty much since the law's enactment in 2010.

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5 Things You Need to Know If the Affordable Care Act Is Repealed

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Republicans plan to repeal the Affordable Care Act. What comes next is anyone's guess, but here are five things businesses should consider.

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ROANOKE, Va. - On March 18, 1991, my life changed. I was an 18-year-old student at a community college in southwestern Virginia, working out at the gym, when I got a headache. A thunderous pain shot through my head and I thought, "I am going to die now."

One month later, I woke up. Two brain surgeries lasting a total of 22 hours repaired the ruptured blood vessels that had caused a massive stroke. Luckily, I had health insurance through my part-time job. After years of rehabilitation, I fought my way back into college - earning a master's degree - and into the workplace.

I became a homeowner, married and got a dog. For many years, I worked as a social worker - my way of giving back to the world and honoring the doctors, therapists, nurses and social workers who had helped me reclaim my life.

But a little more than a year ago, something changed. I had trouble paying attention; my short-term memory worsened. I went to see a neurologist who noticed a slight tremor in one of my fingers. His words changed my life for a second time: "I think you have Parkinson's disease." I was 44.

Although I continued to work full time, I struggled more and more with tremors and slowness. My memory and emotional ability to cope with my diagnosis worsened. I was calling my wife from work in tears.

My doctors told me that I had to leave my job. I was devastated - I did not know what my value as a person would be if I could not help others.

I was also devastated financially. Although I was approved for Social Security disability benefits within a month, the cost to keep my employee health benefits under Cobra was $1,300 per month. This premium would have consumed my disability benefit; add in co-payments and deductibles and we would be quickly headed toward bankruptcy and losing our home.

Instead, over the summer, I was able to get a Gold Aetna plan for $450 per month through the Obamacare exchange in Virginia. It was still expensive - because of my wife's income, I did not qualify for a subsidy - but my medical expenses became manageable. The plan covered more benefits than my previous employer plan; for example, my co-payments for counseling were only $10.

Aetna dropped most of its Obamacare plans this year, including mine, citing financial losses. But Obamacare will still work for me. I just enrolled in a Silver OptimaFit plan for $421 per month. I can see all the same doctors and take all the same medications, but will need to pay a little more for counseling.

My medications for symptoms related to Parkinson's disease and dementia cost about $900 per month, but under my Obamacare coverage, I pay only $130 per month.

Without these medications, and therapy, I would lose the capacity to function cognitively and emotionally. Patients like me are at a high risk for suicide because of depression stemming from cognitive decline. If I stopped receiving the care I needed, I would most likely end up living in a hospital or nursing home to keep me safe, which would cost the government much more money.

My prognosis is not good, but Obamacare gets me the treatment I need so that I can be myself as long as possible. Without this insurance, my illness would progress more rapidly, until I died.

Early on Thursday morning, the Senate voted to begin the process of repealing Obamacare. On Friday, the House followed suit. A repeal of Obamacare - without even knowing what the replacement would be - obviously makes me very scared. I used to be the one helping people as a social worker. Now I'm the one who needs help.

It's not too late for Republicans in Congress to change their minds and see reason. It will be at least a few weeks before Congress formally votes on the question of repeal.

If one of the last meaningful things I can do is help even one person understand how important it is for millions of people to keep their Obamacare, then my illness will have served its purpose. For that I will be grateful.

A version of this article appears in print on , on Page SR2 of the New York edition with the headline: Without Obamacare, I Will Get Sicker, Faster. Order Reprints | Today's Paper | Subscribe

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Opinion | Without Obamacare, I Will Get Sicker, Faster, Until I Die

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ROANOKE, Va. - On March 18, 1991, my life changed. I was an 18-year-old student at a community college in southwestern Virginia, working out at the gym, when I got a headache. A thunderous pain shot through my head and I thought, "I am going to die now."

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News Corp is a network of leading companies in the worlds of diversified media, news, education, and information services.

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The Patient Protection and Affordable Care Act of 2010, known as Obamacare, reshaped the U.S. health-insurance market. The November election handed Congress and the White House to Republicans, who have vowed to repeal and replace the law. As President Obama heads to the Hill to defend his signature legislation, here are some things to know.

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5 Things Things to Know About the Affordable Care Act

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The Patient Protection and Affordable Care Act of 2010, known as Obamacare, reshaped the U.S. health-insurance market. The November election handed Congress and the White House to Republicans, who have vowed to repeal and replace the law. As President Obama heads to the Hill to defend his signature legislation, here are some things to know.

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Six of One - Obamacare vs. The Affordable Care Act

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Axing Affordable Care Act with no replacement would be a disaster

In dozens of rallies across the country on Sunday, Affordable Care Act advocates pledged to fight any attempts by Congress to repeal the act without a replacement - and any attempt to dismantle Medicare or Medicaid. Thousands of these people were at San Francisco's City Hall, joining House Minority Leader Nancy Pelosi, D-San Francisco, Mayor Ed Lee and Joan Baez to share their stories about how they had benefited from the mandated health insurance program.

San Francisco has its own program to expand health services to the uninsured, known as Healthy San Francisco. City leaders have taken pains to assure city residents that they will not suffer an immediate and dramatic access loss no matter what happens in Washington, where Republicans have started the process of repealing the Affordable Care Act.

Yet, as attendees at the rally well know, the fate of the Affordable Care Act affects all of us.

For Congress to repeal the act without a responsible replacement would be morally repugnant for citizens and economically chaotic for our health care system.

Nobody believes the Affordable Care Act has been an unqualified success. Doctors have complained about increased paperwork, and some patients seeking plans on the state exchanges have complained about high deductibles and costly premiums. The cost of drugs is still far too high for most patients.

Yet the success the Affordable Care Act has had is undeniable. Twenty million Americans have gotten coverage thanks to the act and its coverage provisions. Terrible facets of our pre-ACA insurance system, like denying coverage to people with pre-existing conditions, have largely gone by the wayside. Even people who receive their health care through their employers have enjoyed benefits, like the ACA's ban on "lifetime limits" for benefits any one enrollee may receive.

These are the reasons why it would be devastating to repeal the Affordable Care Act without issuing a serious replacement, and these are the reasons why Americans are rallying to save it. Congress must listen.

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Axing Affordable Care Act with no replacement would be a disaster

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In dozens of rallies across the country on Sunday, Affordable Care Act advocates pledged to fight any attempts by Congress to repeal the act without a replacement - and any attempt to dismantle Medicare or Medicaid.

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Republicans cautioned that the report painted only part of the picture - the impact of a fast repeal without a Republican replacement. Senator Orrin G. Hatch, Republican of Utah and the chairman of the Finance Committee, said the numbers represented "a one-sided hypothetical scenario."

"Today's report shows only part of the equation - a repeal of Obamacare without any transitional policies or reforms to address costs and empower patients," he said. "Republicans support repealing Obamacare and implementing step-by-step reforms so that Americans have access to affordable health care."

Congress last week approved a budget that clears the way for speedy action to repeal the health care law. The votes were 51 to 48 in the Senate and 227 to 198 in the House.

But Republicans have yet to agree on a replacement bill, and existing Republican plans, like one drafted by Representative Tom Price of Georgia, who was selected as Mr. Trump's secretary of health and human services, have yet to be scrutinized by the budget office. The office provides Congress with the official projections of legislative costs and impact that lawmakers use to formulate policy.

After Medicaid expansion and marketplace subsidies go away.

After penalties associated with the individual mandate go away, and some insurers leave the market.

Here's how much the number of uninsured could rise if major portions of the health law were repealed today, according to a new study.

After Medicaid expansion and marketplace subsidies go away.

After penalties associated with the individual mandate go away, and some insurers leave the market.

Here's how much the number of uninsured could rise if major portions of the health law were repealed today, according to a new study.

"No wonder President-elect Trump realizes that repeal without replace is the real disaster," said Senator Chuck Schumer of New York, the Democratic leader. "No wonder he has admonished the Congress not to do plain repeal."

Republicans now have two powerful reasons to "repeal and replace" together: They hope to protect about 20 million Americans who have gained coverage under the law. And they want a politically acceptable judgment from the Congressional Budget Office on the effects of their alternative.

Mr. Trump's statement last week that a replacement plan should go hand in hand with repeal efforts had already ignited a sense of urgency among Republicans on Capitol Hill. Over the weekend Mr. Trump said he was close to completing a plan to replace the Affordable Care Act with the goal of "insurance for everybody," but congressional aides said Tuesday that they had not seen an actual proposal.

Republican congressional leaders are trying to put together a plan that could pass muster with the Trump team and also win approval in the Senate under fast-track procedures that would neutralize the threat of a Democratic filibuster.

House Speaker Paul D. Ryan and Senator Mitch McConnell of Kentucky, the Republican leader, met last week with Mr. Price to hash out alternatives, and they have been in close contact with the relevant committee leaders and staff members to begin hammering out ideas that could come into relief at the end of the month, when Republicans have their annual policy retreat.

Stephen Miller, a former Senate press aide and the incoming senior White House adviser for policy, who has been particularly aggressive in presenting himself as the voice of Mr. Trump on all policy matters, has pushed the notion that a plan should move quickly and in tandem with a replacement measure, rather than in a series of smaller bills, congressional aides said.

The repeal legislation analyzed by the budget office would have eliminated tax penalties for people who go without insurance. It would also have eliminated spending for the expansion of Medicaid and subsidies that help lower-income people buy private insurance. But the bill preserved requirements for insurers to provide coverage, at standard rates, to any applicant, regardless of pre-existing medical conditions.

"Eliminating the mandate penalties and the subsidies while retaining the market reforms would destabilize the nongroup market, and the effect would worsen over time," the budget office said.

The office said the estimated increase of 32 million people without coverage by 2026 resulted from three changes: About 23 million fewer people would have coverage in the individual insurance market. Roughly 19 million fewer people would have Medicaid coverage. And there would be an increase in the number of people with employment-based insurance that would partially offset those losses.

The estimates by the budget office are generally consistent with projections by the Obama administration and by insurance companies.

In its report, the budget office said that repealing selected parts of the health care law - as specified in the earlier Republican bill - would have adverse effects on insurance markets.

In the first full year after the enactment of such a bill, the office said, premiums would be 20 percent to 25 percent higher than under current law.

Repealing the penalties that enforce the "individual mandate" would "both reduce the number of people purchasing health insurance and change the mix of people with insurance," as younger and healthier people with low health costs would be more likely to go without insurance, the budget office said.

The Republican bill would have eliminated the expansion of Medicaid eligibility and the subsidies for insurance purchased through Affordable Care Act marketplaces, after a transition period of about two years.

Those changes could have immediately increased the number of uninsured by 27 million, a number that would gradually increase to 32 million in 2026, the budget office said.

Without subsidies, the budget office said, enrollment in health plans would shrink, and the people who remained in the individual insurance market would be sicker, with higher average health costs. These trends, it said, would accelerate the exodus of insurers from the individual market and from the public marketplaces.

As a result, it said, about half of the nation's population would be living in areas that had no insurer participating in the individual market in the first year after the repeal of marketplace subsidies took effect. And by 2026, it estimated, about three-quarters of the population would be living in such areas.

While writing the Affordable Care Act in 2009 and 2010, lawmakers continually consulted the Congressional Budget Office to understand the possible effects on spending, revenue and insurance coverage. The current director of the budget office, Keith Hall, who signed the report issued on Tuesday, was selected and appointed by Republican leaders of Congress in 2015.

The latest report was requested by Mr. Schumer and two other Democrats, Senators Ron Wyden of Oregon and Patty Murray of Washington.

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patient protection and affordable care act (2010)

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Health Law Repeal Could Cost 18 Million Their Insurance, Study Finds

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Republicans cautioned that the report painted only part of the picture - the impact of a fast repeal without a Republican replacement. Senator Orrin G. Hatch, Republican of Utah and the chairman of the Finance Committee, said the numbers represented "a one-sided hypothetical scenario."

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KANSAS CITY, Mo. - The Fullers are just adjusting to life with a child who has cystic fibrosis. Emerson Fuller was born Oct. 26, 2015 and diagnosed with the genetic disease three weeks later.

Life is different now. No shoes in the house, everyone washes their hands and uses sanitizer religiously. No smokers or sick people can come over for a visit. Mom Elizabeth has given up her career to take care of their 14-month-old son. Most of all, health care costs for their family have gone up dramatically.

"You know it was immediately like how are we going to afford keeping our kid alive basically," Elizabeth said of the diagnosis. "It wasn't until later that we started realizing it's not only fatal, but it's also really, really expensive."

Emerson's medications are about $1000 a month, covered by his insurance through the Affordable Care Act.

"You get this diagnosis and you feel like you're sinking because your whole life has gone from healthy, happy kids to this whole new world that you didn't even know existed and someone hands you a life preserver and is like here, you're going to be fine and you're going to stay afloat, just hold onto this and now it's like someone is wanting to take that away from us and it feels like we're sinking all over again," Elizabeth shared.

Critics argue the ACA, also known as Obamacare, is also expensive with high premiums and tax increases.

"I get it but it's so crushing because their friends are still relatively healthy compared to what we have to deal with," Elizabeth shared. "I understand they can't afford it. I understand they have the penalties that they get every year but their lives aren't depending on that medicine. Their families aren't depending on the ACA to keep them out of bankruptcy."

Dr. K. Baptiste-Edward, Swope Health Services Outreach and Enrollment Manager, said, "There may have been an increase in some premiums but the advance premium tax credits kind of soften that blow."

Her team alone has enrolled 18,000 people in the Kansas City metro since the ACA rollout. Dr. Baptiste-Edward said, "I know how it worked for so many people. I've seen people walk through the doors with pre-existing conditions and they were unable to get health insurance for years."

Tuesday, the Congressional Budget Office released a report showing what would happen if Congress eliminated tax penalties for the uninsured, money for Medicaid expansion and subsidies for low-income families to get private insurance.

As a result, 18 million people would lose their health insurance in the first year. A total of 32 million people would lose their coverage in 10 years.
Read the full report.
Republicans are firing back saying the CBO report isn't complete and doesn't give a full picture. No replacement plan has been proposed or analyzed yet.

Dr. Baptiste-Edward says she wants the ACA to stay because, "I've seen so many broken, broken people. I've seen so many people bankrupt because of high medical bills and to be able to take that off of them is very rewarding."

"It's so necessary, it's so vital for families like ours. Families that have pre-existing conditions or long-term, serious health needs," Elizabeth said. "I don't want to lose my kid you know? I don't want to ever reach a point where his life is in the balance."

Swope Health Central is extending its hours to help people who want to enroll in the ACA. Call 816-599-5590 to make an appointment.

The extended hours are:

January 25th - January 31st

8:00 a.m. to 7:30 p.m.

-----
Dia Wall can be reached at dia.wall@kshb.com.
Follow @DiaWall

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Kansas City family fears repeal of the Affordable Care Act

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KANSAS CITY, Mo. - The Fullers are just adjusting to life with a child who has cystic fibrosis. Emerson Fuller was born Oct. 26, 2015 and diagnosed with the genetic disease three weeks later. Life is different now. No shoes in the house, everyone washes their hands and uses sanitizer religiously.

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Republicans mock The Affordable Care Act by pointing out they reached 2 million less than their goal, but the republicans yet to have even a plan.

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Republicans are not in favor of Obamacare.