Despite the benefits of Obamacare many still find themselves falling through the cracks of the health insurance system – and things could be about to get worse

Before she goes to bed each night, Aldona Kudirka prays her daughter Maggie will still have health insurance in 2018. Her fears have only grown worse now that Donald Trump is officially in office.

Kudirka’s family has been plagued by the issues that currently dog the US health insurance system and highlight the failures of Barack Obama’s landmark health reform, the Affordable Care Act: Aldona and her husband own a small business and make too much money to qualify for subsidies meant to help cover high health insurance costs, but nor can they easily cover their $1,200 monthly premiums.

When Maggie, a dancer who trained at the Joffrey ballet school, was diagnosed with aggressive stage 4 breast cancer in June 2014 at age 23, they had to turn to family, friends and strangers on the internet to ask for $45,000 to help them pay for her treatment.

Turning to strangers on the internet to cover medical costs may seem drastic, but the Kudirkas and others like them are even more afraid of what will happen if Donald Trump successfully repeals Obama’s health plan. “I worry about it every day because we have a bunch of lunatics running the show in every house of government,” Kudirka said.

In the wake of Trump’s victory Republicans are aggressively pushing to repeal Obamacare, which has seen 20 million people gain health insurance coverage since it was enacted in 2010.

Facebook Twitter Pinterest Maggie Kudirka: an internet appeal raise $45,000 to pay for her cancer treatment. Photograph: Courtesy of Maggie Kudirka

“Obamacare is a complete and total disaster,” Trump said last week. “It’s imploding as we sit.”

Days before Trump’s inauguration, partial repeal is already moving forward without any replacement healthcare plan agreed to, creating a murky picture of the future of US healthcare. Next week the Trump White House begins in earnest.

The uncertainty has led to anxiety for those who were already unable to afford medical costs and had turned to crowdfunding websites for help. Problems with the US health insurance system are prominently displayed on these sites, where at any moment, thousands of people are requesting thousands of dollars to help pay for cancer treatment, organ donations and other medical emergencies.

Crowdfunding site YouCaring said of its 14 categories, medical expenses is its most popular, making up 40% of all fundraisers on the site. More than 150,000 people have used YouCaring to help fund a medical procedure or expense, according to the site. And on the platform GoFundMe, “Medical, Illness, and Healing” is the most popular section. In 2014, $147m was raised on the site for medical costs, up from $6m in 2012.

Faced with a high deductible and procedures, like acupuncture, that were not covered by their insurance the Kudirka family felt they had no option but to ask strangers for help. “Any money we raised just goes to our medical needs and what’s best for my health,” Maggie Kudirka said.

Now the family is worried about changes to the healthcare system that would further devastate the family’s finances.

Because of Obamacare, Maggie has been able to stay on her parents’ health insurance until her 26th birthday this year and she qualifies for subsidies that dramatically cut the premiums on her individual healthcare plan. Obamacare also ensured that she can’t be denied coverage, or forced to pay more for coverage, because her cancer is a pre-existing condition.

How Obamacare could be dismantled by Republicans Read more

Trump has said he would like to keep parts of Obamacare, including the parental coverage until age 26 rule and the pre-existing coverage protection, but it is unclear whether or how Congress and Trump will agree such a plan.

Without the pre-existing conditions protection, 52.2 million people could lose access to health insurance, according to a Kaiser Family Foundation (KFF) report. And people with pre-existing conditions that are still allowed to get health insurance would probably have to pay more for coverage, the report said.

Stefon Alexander, a rapper known as P.O.S., was diagnosed with a kidney problem when he was 15 and as an adult experienced a health system where he could be denied coverage because of his “pre-existing condition”.

Just before Obamacare was introduced Alexander had lost his health insurance and his kidneys started to fail after he had stopped taking his medication. Obamacare gave Alexander access to affordable treatment through Medicare, a federal health insurance program for people aged 65 and older or who have certain disabilities.

Facebook Twitter Pinterest Stefon Alexander, who also goes by his rapping name P.O.S, had his friends in the Doomtree rap collective to thank for raising funds for his medical expenses. Photograph: Nate Ryan/Doomtree

“There were plenty of headaches and nightmares leading up to dialysis, but luckily with the Affordable Care Act I was able to get covered in time and do some dialysis,” Alexander, who is now 35, said. “But I still had some giant, giant bills getting into dialysis.”

That’s when his friends, the members of rap collective Doomtree, turned to the internet to create a fundraiser for Alexander.

Before showing signs of kidney failure, he had spent his money recording an album, which he would earn back on tour. But when he got sick, he was faced with deciding to either struggle through the tour or go into serious debt because of the lost tour earnings.

More than 1,000 people donated money to the fundraiser, getting him nearly double the $25,000 goal his friends had set. “I was able to keep up with bills for a really long time, I was able to not go on tour,” he said.

Alexander continues to work his way out of medical debt and takes 26 pills a day to control his immune system so it doesn’t reject his donated kidney. He is also paying bills on medical equipment he had collected during dialysis, including unused equipment that can’t be returned but still needs to be paid for. “That’s why my biggest fear right now is when the Affordable Care Act is repealed, all of a sudden my monthly bill for maintenance medication is going to cripple me,” Alexander said.

Trump has said he does not want to change Medicare, but his nominee for health and human services secretary, Tom Price, refused to say whether he would avoid cuts to Medicare in a hearing on Wednesday.

Trump has also said his plan would be “insurance for everybody”, although a nonpartisan analysis by the Congressional Budget Office found that without a replacement, repealing Obamacare would cause 18 million people to lose their insurance in 2018. And without a substantive replacement, 32 million people would lose their insurance by 2030.

“This projection is meaningless, as it takes into account no measures to replace the law nor actions that the incoming administration will take to revitalize the individual market that has been decimated by Obamacare,” said AshLee Strong, a spokeswoman for the House speaker, Paul Ryan, a champion of the repeal.

But even those who have not been completely protected by Obamacare and looked for help to pay for medical costs online are wary of the Republican’s unclear repeal plans.

Take Dennis Disbot, who was diagnosed with cancer two weeks before the due date of his first child. His wife went into labor the day the cancer was supposed to be removed and two years later, he is still in treatment. That treatment included chemotherapy, which destroys your immune system to slow the spread of cancerous cells, leaving patients vulnerable to ailments like the fever Disbot had as he spoke to the Guardian from the hospital.

Facebook Twitter Pinterest Theodore Sungjin Disbot, Denis Disbot and Esther Disbot. Photograph: Courtesy of the Disbot family

He was covered by his employer’s health insurance when he was diagnosed, but paid directly for a family health insurance plan after he had to leave his job to fight cancer, which he said was “a full-time job”.



This did not cover all the costs associated with cancer treatment, so Disbot’s family created an online fundraiser seeking $75,000 to help pay for the cost of living in San Francisco, one of the most expensive places in the country; holistic treatments to complement his chemotherapy and stem cell treatments; and for things like sperm banking, which are not covered by insurance.

Despite the shortfall, Disbot is pleased with Obamacare.

“The pre-existing conditions, that’s huge. Having that set the market standard was really amazing,” Disbot said. “But it shouldn’t be amazing, it’s a right – healthcare is not a privilege, it’s a right, and our rights are at stake right now.”

He said having cancer showed him how crippling it could be to have to deal with an unexpected medical challenge and that no one is guaranteed a long, healthy life.

“Living to be 80 years old is not guaranteed,” Disbot said. “I totally expected to be old and in my rocking chair, chilling on a porch and looking out, getting through life unscathed and I was wrong.”

He said that if he was well, he would be on the streets protesting against Obamacare repeal.

“I think about my son,” Disbot said. “Sometimes it’s not a question of if a medical situation arises, it’s when”.