Bonnie Makkinjie, a teacher from Florida, was diagnosed last year with triple-negative breast cancer (TNBC).
She was told she’d need surgery as soon as possible.
Fortunately, she said, in 2014 she signed up for healthcare coverage through the ACA health insurance marketplace.
“Obamacare absolutely saved my life,” Makkinjie, 51, a mother and grandmother who teaches art to children with autism and other developmental disabilities, told Healthline.
“None of my previous jobs offered insurance, and the premiums and deductibles were just too high to make it feasible,” she said. “I was fortunate to fall into the right income bracket for ACA insurance.”
But if the ACA is repealed, Makkinjie fears she may soon be without health insurance once again.
“I’ll need future MRIs and scans to be sure the cancer has not returned,” she said. “I doubt I’ll be able to afford them without affordable insurance. It’s a scary thought.”
‘I’m a dead woman walking’
Tina Camino Smith, a small business owner from Ohio, who’s been battling MALT lymphoma for nearly a decade, has the same fears.
“Without the Affordable Care Act, I’m a dead woman walking,” said Smith, who was also diagnosed last year with myelodysplastic syndromes (MDS), which, most experts agree, is a form of blood and bone marrow cancer.
If the ACA is repealed and there isn’t an adequate replacement, Smith told Healthline she will forego treatment and “pursue doctor-assisted suicide, when the time comes.”
“I cannot add the financial burden to an already difficult time to my family. Both my therapist and husband understand this,” she explained.
President Donald Trump and members of Congress continue to discuss the possible repeal of the ACA, which was signed into law in March 2010.
Meanwhile, the anxiety and anger is palpable among people with cancer and cancer survivors who have insurance because of Obamacare.
Tony Glavan, 60, a retired analysis technician from Minnesota, went through several clinical trials before going into lasting remission.
He purchased health insurance through the ACA after he retired. The policy gave him the peace of mind that, even if his cancer recurs, he is covered. But now he doesn’t know what to think.
“If my cancer comes back, what does the insurance market hold for me?” he told Healthline. “Will I be allowed to participate in clinical trials as easily as I did before?”
Glavan said the Republicans want to “cherry pick the good parts about ACA, but I don’t think they have any idea how that will be economically feasible if they don’t force the healthy younger people to buy insurance.”
Is Obamacare a disaster?
Scrapping the healthcare law was one of the primary tenets of Trump’s campaign.
While supporters agree the ACA is not perfect, they note it provides multiple positive provisions and benefits and have added more than 20 million Americans to the ranks of the insured.
The President continues to call it a “disaster,” and the most conservative members of Congress agree the law should be gutted.
But there is growing dissent in the GOP ranks over repealing Obamacare.
During an interview Sunday on CBS News’ “Face the Nation,” Ohio Republican Gov. John Kasich, who had just met with Trump in the White House on Friday, said the hard-line conservatives in his party want to get rid of the entire healthcare law, “and that’s not acceptable.”
Putting people over party, Kasich said he would “stand up” for the folks who will lose coverage if they don't get this right.
“What's at stake here are 20 million Americans,” he said.
Former House Speaker John Boehner also said last week that he doesn't believe Republican legislators will repeal the law, Politico reported.
People with cancer speaking out
At town hall meetings even in red states such as Arkansas and Georgia, members of Congress are being met with hostile crowds, including many people with cancer.
At a CNN town hall with House Speaker Paul Ryan of Wisconsin a few weeks ago, Jeff Jeans, a cancer survivor, and “lifelong Republican” from Arizona, told Ryan that President Obama saved his life.
“Thanks to the Affordable Care Act, I’m standing here today alive,” said Jeans, a small business owner who worked on the Reagan and Bush campaigns.
He was told at age 49 that he had cancer and had just six weeks to live.
“I rely on the Affordable Care Act to be able to purchase my own insurance,” he said. “Why would you repeal the Affordable Care Act without a replacement?”
Ryan responded, “Oh, we wouldn’t do that. We want to replace it with something better.”
The popularity of the ACA nationwide is in fact ascending to new heights, just as Trump’s approval rating sinks to new lows.
According to a national Pew Research Center survey released last week, public support for Obamacare has reached its highest level on record, with 54 percent approving and 43 percent disapproving.
A new poll from Quinnipiac found 54 percent oppose the repeal of Obamacare, while 43 percent support it.
Trump voters who want Obamacare
Kathy Watson, a Trump voter and cancer survivor from Lake City, Fla., told the Los Angeles Times last week that she would have “lost everything” without Obamacare.
Watson said she didn’t think Trump would follow through on his promise to get rid of the ACA.
“I’ll give it a little more time,” she said, “but I’m not really sure about Trump anymore.”
Watson’s story is not unique.
To the surprise of even some politicians, a significant crop of Trump voters across the nation want to keep their Obamacare and their Obamacare-backed Medicaid expansion.
While some Trump voters who have Obamacare complain that it’s too expensive and too complicated, evidently few people who have it want to lose it.
In Grant County, Neb., Trump received more than 93 percent of the vote. But Grant also happens to be the county with the nation’s highest percentage of Obamacare enrollees.
One in three Grant County residents, or 33 percent of the under-65 population, bought insurance on Obamacare exchanges, according to a CNN report.
In Whitley County, Ky., where 82 percent of voters supported Trump in the presidential election, the uninsured rate has dropped from 25 percent in 2013 to 10 percent today because of Obamacare, Vox reported.
A new survey by the Kaiser Family Foundation asked Trump voters who relied on Obamacare or Obamacare-backed Medicaid why they voted for Trump.
The answers varied.
Some were simply not aware that their coverage through Medicaid expansion was the result of the ACA.
Others said they signed up for Obamacare because it was the best option available but were hoping Trump would reduce the costs.
People with cancer play the waiting game
Meanwhile, people with cancer and cancer survivors nationwide, of all political persuasions, continue to watch the news and wait.
In Healthline interviews with more than two dozen people with cancer who are insured through Obamacare, the three most popular provisions in the law that they said any replacement plan should include are:
- the guarantee that coverage not be denied to people with preexisting conditions
- the assurance that the lifetime dollar amount of an insurer’s coverage cannot be limited
- the provision that it pays for preventative care such as mammograms, colonoscopies, and other tests
Lisa Swanson, 58, a graphic designer from New Hampshire, wonders what the future has in store for her and her fellow cancer survivors.
Swanson had a rare type of tumor called a pheochromocytoma on her right adrenal gland. She had the tumor surgically removed, along with the adrenal gland, in 2013. She now has insurance thanks to the ACA.
But if the law is repealed, she may lose coverage.
“I dread finding out what the Republicans will decide is ‘good enough’ for those of us with preexisting conditions,” she said. “I’ve done everything I can to stay healthy. Now I just have to trust that the Republican Party will not pull the rug out from under my life.”
Repeal would hit Hispanic-Americans hard
The nation’s Hispanic cancer patient community is among the most vulnerable to a repeal or replacement of Obamacare, according to healthcare and insurance industry experts.
The Department of Health and Human Services reports that the uninsured rate among Hispanics has dropped by more than 25 percent since 2010, in large part because of the ACA.
Glenn Llopis of Healthy Hispanic Living, the first online preventive care educational platform targeted to U.S. Hispanics, told Healthline that prior to the ACA’s demands for patient satisfaction, there was no incentive for Hispanics to pay attention to their health.
“Hispanics do not always feel welcomed by the healthcare industry, they tend to associate doctors with hospitals and hospitals with a place to die, not get better.” said Llopis, who is author of the new book, “The Innovation Mentality.”
Many first-generation Hispanics would rather have a major surgical procedure performed in their native countries than in the United States, Llopis said.
He added that Hispanics are “often not proactive with their preventive care and thus disproportionately experience major health problems later in their lives. Without the ACA incentive, the threat to the U.S. economy and impact on global competitiveness will be catastrophic.”
Exact national figures for Hispanic patients are not available, but, Llopis noted, “You don’t need to be a statistician to realize that if the Hispanic population increased by 243 percent between the 1980 and 2010 censuses, the number of Hispanic patients nationwide has only grown.”
‘The president is used to his lifestyle’
Amelia Tena, 56, a Hispanic-American from Southern California, was diagnosed with breast cancer in 2004 and signed up for the ACA last month.
She was laid off from work last year and ended up with COBRA (Consolidated Omnibus Budget Reconciliation Act of 1985), which she could not afford.
“I don't know what kind of plan will be next, or if I will even be able to have health coverage,” she told Healthline. “My concerns are stressing me out. How will it be for cancer patients? Right now my copay is $75, and for me this is already high.”
Tena doesn’t believe Trump or Congress have a plan that will help her the way the ACA has.
“I think the president is used to his lifestyle,” she said. “He's not thinking of the middle-class population. In reality, he wants to get all Mexicans out of the U.S.A.”
City of Hope offering advice
Mayra Serrano is the manager of the Center of Community Alliance for Research & Education (CCARE) at the City of Hope, a comprehensive cancer center in the Los Angeles area.
She said Obamacare’s provisions — including its preventative medicine provisions — have demonstrably improved the lives of Hispanic people with cancer.
One of the best features of the ACA, Serrano said, is that it typically pays for screenings, scans, mammograms, Pap smears, colonoscopies, and other things people with cancer need but often can’t afford when there is a copay, or when they have no insurance.
“For people making minimum wage, $20 is a lot of money. It could come down to a choice between food and medicine,” she said.
If there is a repeal, Serrano said it is most likely that many Hispanic-Americans with lower incomes will no longer get screenings.
Colon cancer, cervical cancer, and other cancer diagnoses will then rise in these populations.
“A repeal could push public health back decades,” said Serrano.
She notes there is great fear in the Hispanic community over what Trump will do for Hispanics who signed up for Obamacare because many are in “mixed families” — meaning that some members of a family are undocumented while others are not.
But Serrano remains cautiously optimistic that Obamacare will be saved.
“Cancer patients and others are telling their stories now, across the country,” she said. “It is making me more optimistic that it will not be repealed. But at this point, we just don’t know what will happen.”