Back in 2008, the TV show Breaking Bad asked a question that is still on a lot of Americans’ minds: How far would you go to pay for medical care? In Breaking Bad, the main character ends up building a meth empire to pay for his cancer treatment, which is a solution we don’t necessarily endorse, but you do what you have to do.
Today we’re going to be talking about real life (slightly less dramatic) examples of the lengths folks are forced to go to these days to navigate our for-profit healthcare system. From TikTok to Go Fund Me to class action lawsuits and appearances on the Dr. Phil show, ordinary people may not be selling meth, but they are turning to public platforms to get the care they need.
We are joined today by Jill Parkinson, who recently went viral on TikTok talking about her own health care horror story and is channeling that experience into Medicare for All activism!
Jill tells us her healthcare story, which begins with long-undiagnosed stomach pain since she was a teenager. In 2021 the pain got so bad that she went to urgent care. Diagnosed with endometriosis, Jill had two surgeries. She reports she did “everything right”: got marketplace insurance, paid her premiums, and paid the full amount of her deductible and out of pocket max of $7,500 upon checking into the hospital for surgery.
Following the surgery, she needed to immediately begin taking a prescription to prevent more pain and surgery yet again. She faced an epic runaround with her insurance company, the specialty pharmacy, and the hospital. Once she sorted that out, she assumed insurance would cover the full cost of the prescription, because that’s what insurance is supposed to do! Even though she had met her deductible, she ended up paying $1,500 out of pocket for the prescription, and still didn’t get it on time.
So Jill took to TikTok, and went viral within hours.
The responses to Jill’s video elicited lots of advice and comments:
- never pay up front or even pay at all.
- Use Mark Cuban’s Cost Plus Drugs.
- Getting drugs from Mexico or Canada. (Northwest Pharmacy Canada priced the same drug at $300.)
- People told me to get a lawyer or call state authorities.
- Go to the manufacturer’s website for a discount. (This drug was $1,600 and the max that the manufacturer will take off is $300, making it $1,300.)
- “It’s Obamcare’s fault”
- Ask for a grant.
- “Karen as hard as you can. Karen harder than you ever have Karened in your life!!”
- “Hang in there, medicare is freaking awesome.”
- “This is why I can’t quit my job. My insurance is too good.”
- “People with no money just don’t get surgeries. We just die and the world continues on.”
- “When I had my son (my 3rd c section) the registration woman told me that if I didn’t pay my copay before leaving, I wouldn’t get to take my son home.”
Would you rather have a literal pain in the ass or have a pain in the ass lawsuit?
Next our hosts and guest play Would You Rather: the Healthcare Edition. Ben tells the story of Christopher McNaughton, who finally found a treatment that changed his life–but insurance company decided he wasn’t worth the cost.
- College student Christopher McNaughton was diagnosed with ulcerative colitis, a chronic inflammatory bowel disease that has no cure. His case was particularly severe, to the point where constant debilitating pain forced him to drop out of school.
- After years without relief, an unusual regimen of biologic drugs at high doses finally brought his disease under control.
- McNaughton was insured through UnitedHealthcare (regular listeners may recall how we feel about them…). The high cost of his treatment triggered an internal “review,” wherein United’s doctors claimed it was “not medically necessary.”
- A lawsuit filed by McNaughton’s family brought to light United’s relentless efforts to reduce spending on his care, despite that this was happening in a year where their profits exceeded 1.5 billion.
- Class action lawsuits filed against insurers can lead to large settlements and expose grievous misconduct through the legal process – but few people choose this route. But most people, when denied by insurance, give up. Americans file appeals on less than 0.1% of claims denied by insurers.
Would you rather have cancer or steal from your children’s future?
Gillian tells the story of Jeni Peters, who beat cancer – but but couldn’t beat the medical debt.
- A South Dakota mom beat breast cancer after years of surgery, radiation, and chemotherapy – only to be saddled with $30,000 of medical debt (joining the nearly 100 million Americans facing medical debt)
- Because she was insured through her employer, Peters had to keep working throughout her illness for fear of losing her coverage, all while facing astronomical out-of-pocket costs.
- Has two adopted children, fostering four others, most from the nearby Pine Ridge Indian Reservation. To pay off debts, would mostly have to cut down on her children’s access to sports, social activities, etc. Has refused to do it so far.
- About 4 in 10 cancer patients in the US are forced to withdraw money from retirement, college, or long-term savings accounts to pay for treatment.
- “She is still wading through collection notices in the mail and fielding calls from debt collectors. Peters told one that she was prepared to go to court and ask the judge to decide which of her children should be cut off from after-school activities to pay off the debts.”
Would you rather lose a child or GoFundMe?
Ben tells us about Josy and Dustin Baker, whose care was so expensive a GoFundMe was their only option.
- The Bakers’ four-year-old daughter was diagnosed with melioidosis, a rare bacterial disease that caused her to lose the ability to walk and spend a month on a ventilator.
- The costs of Lylah’s treatment were astronomical – $10,000 per night to stay in the ICU; four plasmapheresis treatments at $45,000 apiece; a brain surgery that cost over $100,000.
- These costs were covered in part by insurance – at first. As their daughter began to recover, insurance began denying their claims.
- To even hope she will be able to walk and talk again, she requires three physical therapy sessions a day, five days a week,at $400 each. Dustin’s insurer paid for 18 sessions – total.
- A GoFundMe, which raised $88,000, was the only way they were able to pay their debt. Without the donations, there was no way they ever would be able to meet the cost of keeping their daughter alive.
- Crowdfunding platforms like GoFundMe can provide lifesaving funds for individuals facing exorbitant healthcare costs. (In fact, one-third\ of all GoFundMe campaigns relate to medical bills.)
- But GoFundMe, which is headquarted in Silicon Valley and owned primarily by venture capitalists, operates by the same logic as social media – you need a platform to gain traction. Advantages still go to the people with the best networks and the most resources.
Would you rather talk to an insurance company flack or a politician?
Gillian shares another avenue: call your legislator, who may intervene on your behalf with a hospital, physician, or insurance company. “Constituent services” takes a huge percentage of most elected officials’ time, and legislators tell us that healthcare is the #1 problem constituents call with. For a Texan, the choice between Ted Cruz or an insurance company is a tough one.
Would you rather go to your own Doctor or Dr. Phil?
Gillian tells us about another alternate strategy: Go on Reality TV! Dr. Phil features a lot of guests who need mental healthcare but can’t afford it. So they go on his show, let him beat up on them for entertainment value, and then receive some free access to care for their troubles. Begging culture at it’s finest. Unfortunately Dr. Phil’s show is ending after this season.
Would you rather not deal with this at all?
Ben mentioned the last option when you can’t get the care you need: Die!
- A recent investigation by STAT found that Medicare Advantage plans are using Artificial Intelligence algorithms to generate denials and to cut off care. You thought you were going up against the medical-industrial complex, but you’re actually going up against SkyNet (gratuitous Terminator reference).
- “We take patients who are going to die of their diseases within a three-month period of time, and we force them into a denial and appeals process that lasts up to 2.5 years,” Chris Comfort, chief operating officer of Calvary Hospital, a palliative and hospice facility in the Bronx, N.Y., said of Medicare Advantage. “So what happens is the appeal outlasts the beneficiary.”
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