Americans who crowdfund their health costs dread for future under Trump

Despite the benefits of Obamacare many still find themselves falling through the fissures 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 anxieties have only grown worse now that Donald Trump is officially in office.

Kudirkas family has been beset by the issues that currently dog the US health insurance system and highlight the failures of Barack Obamas landmark health reform, the Affordable Care Act: Aldona and her husband own a small business and attain too much money to qualify for subsidies meant to help cover high health insurance costs, but nor can they easily encompass 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 household, friends and strangers on the internet to ask for $45,000 to assist them pay for her therapy.

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

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

Maggie Kudirka: an internet appeal raise $45,000 is payable for her cancer treatment. Photograph: Courtesy of Maggie Kudirka

Obamacare is a complete and total calamity, Trump said last week. Its imploding as we sit.

Days before Trumps inauguration, partial repeal is already moving forward without any replacing 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. Problem 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 gifts and other medical emergencies.

Crowdfunding site YouCaring said of its 14 categories, medical expenses is its most popular, attaining up 40% of all fundraisers on the site. More than 150,000 people have employed YouCaring to help fund a medical procedure or expenditure, according to the site. And on the platform GoFundMe, Medical, Illness, and Healing is the most popular segment. In 2014, $147 m was created on the site for medical expenses, up from$ 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 fund we created just goes to our medical needs and whats best for my health, Maggie Kudirka said.

Now the family is worried about modification of the healthcare system that would farther devastate the familys finances.

Because of Obamacare, Maggie has been able to stay on her mothers health insurance until her 26 th birthday this year and she qualifies for subsidies that dramatically cut insurance premiums on her individual healthcare scheme. Obamacare also ensured that she cant be denied coverage, or forced to pay more for coverage, because her cancer is a pre-existing condition.

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 care 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 drug. Obamacare gave Alexander access to affordable therapy through Medicare, a federal health insurance program for people aged 65 and older or who have certain disabilities.

Stefon Alexander, who also goes by his rapping name P.O.S, had his friends in the Doomtree rap collective to thank for creating funds for his medical expenditures. 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.

Thats 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 expended his fund 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 indebtednes because of the lost tour earnings.

More than 1,000 people donated money to the fundraiser, getting him virtually double the $25,000 aim 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 doesnt repudiate his donated kidney. He is also paying bills on medical equipment he had collected during dialysis, including unused equipment that cant be returned but still needs to be paid for. Thats why my biggest fear right now is when the Affordable Care Act is repealed, all of a sudden my monthly bill for upkeep 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 observed that without a replacement, repealing Obamacare would cause 18 million people to lose their insurance in 2018. And without a substantive replacing, 32 million people would lose their insurance by 2030.

This projection is meaningless, as it takes into account no measures in place to replace the law nor actions that the incoming administration will take to revitalize the individual marketplace 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 unclear repeal plans.

Take Dennis Disbot, who was diagnosed with cancer two weeks before the due date of his first infant. His spouse went into labor the day the cancer was supposed to be removed and two years later, he is still in treatment. That therapy 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.

Theodore Sungjin Disbot, Denis Disbot and Esther Disbot. Photo: Courtesy of the Disbot household

He was covered by his employers health insurance when he was diagnosed, but paid directly for a family health insurance scheme after he had to leave his undertaking to oppose cancer, which he said was a full-time job.

This did not cover all the costs associated with cancer treatment, so Disbots family generated an online fundraiser attempting $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 therapies; and for things like sperm banking, which are not covered by insurance.

Despite the deficit, Disbot is pleased with Obamacare.

The pre-existing conditions, thats huge. Having that defined the market criterion was really amazing, Disbot said. But it shouldnt be amazing, its a right healthcare is not a privilege, its a right, and our rights are at stake right now.

He said having cancer presented 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 shake chair, chilling on a porch and appearing out, get through life unscathed and I was wrong.

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

I think about my son, Disbot said. Sometimes its not a question of if a medical situation starts, its when.

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