(Interview 5/2019, oil on linen 40 ins. x 30 ins.)
In March 2020 California issued a cease and desist order for Aliera Healthcare, Inc. and its subsidiary Trinity HealthShare. The operations moved to Sharity Ministries which filed for Chapter 11 bankruptcy in July 2021.
Artist Note (2019)
What are healthcare sharing ministries? Enrollment has ballooned in the last few years. Renee was a healthcare sharing ministry member for a brief time. She had no idea she wasn’t buying legitimate health insurance when her insurance broker sold her a faith-based plan.
“Best broken arm I ever had,” Renee Dietchman says thinking back to the day she hit a pole.
In August 2017 Renee was pulling out of a hospital parking lot. She had just arranged to have files sent to another hospital to get her neck pain addressed. “I hit a pole sticking out of the ground. I was going 5 mph.” As soon as she hit the pole, her arm fractured.
“My arm just snapped and dropped. It was crazy. I was totally freaked out. I thought, ‘I think my arm is broken. I can’t have broken my arm. This has to be something to do with my neck.’” With one hand, Renee pulled back into her parking spot. She held her dangling limb and still managed to call her husband on speed dial.
“I must have looked like a complete idiot. I yelled at the valet. ‘Mr. Valet, please help me!’” Renee ended up in the hospital’s emergency room whose parking lot she was trying exit.
The scans showed a tumor in her arm. Doctors followed the trail to her lungs. Bad news. “I looked at my husband and said, ‘I’m dead. This is not good.’” Renee had lung cancer that had metastasized to her arm. She also had a small tumor on an adrenal gland, and two on the brain.
No, Renee is not a smoker. She survived and is in remission. But not without another serious blow. On top of the distressing diagnosis, Renee and her husband found out their healthcare plan was technically not health insurance at all. Renee bought a healthcare sharing ministry plan from a broker and didn’t know it. She was blindsided by the fine print when she got lung cancer.
Healthinsurance.org explains. “Healthcare sharing ministries are faith-based non-profit organizations that pool members’ money to share medical expenses.”
Religious communities such as the Amish have long had objections to health insurance as well as other insurances. The rely on mutual support and have been doing so for decades.The Affordable Care Act carved out exemptions for religious groups that rely on their pooled resources.
The healthcare sharing ministry model has ballooned since the ACA became law in 2010. The Commonwealth Fund writes, “Since the passage of the ACA, HCSMs have been marketed more broadly, reaching people who otherwise might not have considered membership”
Healthcare sharing ministry plans are not subject to state and federal health regulations. A disgruntled customer cannot appeal to a state’s insurance commissioner for relief since healthcare sharing ministries are not technically selling insurance. Healthcare sharing ministries can reject applicants for having preexisting conditions; set limits on what they will payout; require members to declare belief in a higher power; and refuse claims for conditions they deem arising from morally flawed behavior like alcoholism, smoking, drug addiction, out-of-wedlock pregnancies. They typically do not pay for mental health services, contraceptives or abortion.
With some digging we can find healthcare sharing ministries disassociating themselves from traditional insurance. Washington State, Texas and Colorado issued cease and desist orders and/or sued Aliera for misrepresenting themselves as non-profits and using only 20% of collected money to pay members’ claims among other things
(This was the Aliera disclaimer on their website when I first wrote this story. Now their disclaimer can be found on p.12 of the AlieraCare Care sell sheet.)Original disclaimer. (Link unavailable):
I understand that Aliera Healthcare, Inc (which administers for a health sharing ministry) is NOT insurance nor does it provide insurance coverage. It is not intended to be a replacement of comprehensive health coverage found through the Federal or State exchange. Trinity HealthShare, is a health care sharing ministry. Eligible needs are shared by the members according to the membership guidelines. This membership is not a legal binding agreement and does not guarantee or promise that your eligible needs will be shared by the membership. It makes no assumption of risks. If sharing is not possible, you will remain financially liable for unpaid medical bills. The financial assistance members receive come from other member's monthly contributions that are placed in an escrow account, not from Trinity HealthShare (Capitalization is Aliera’s)
Cost. The healthcare sharing ministry plans offer a lot less coverage for the consumer. Less coverage brings premiums down. But at what price if the member’s illness is not covered?
What a disclaimer -- not intended to be a replacement of comprehensive health coverage found through the Federal or State exchange... no guarantee of preexisting condition coverage, limited payouts and skimpier plans
Why did healthcare sharing ministries go from 160,000 enrollees in 2014 to over 1,000,000 in 2018?
Consumers buying insurance on their own are often priced out of ACA-compliant insurance, coverage with many consumer protections. They aren’t getting insurance through a job or government program, so they must buy it on their own. These individuals and their families can purchase insurance on the ACA online marketplaces but they often cannot afford to do so if they don’t qualify for financial help. If consumers are in good health, they may be drawn to cheaper healthcare sharing ministry plans that don’t offer as much coverage and will screen for preexisting conditions.
It is worth noting that the new ACA (Obamacare) online marketplaces never had a chance to stabilize. A divided Congress would not enact changes to improve the Affordable Care Act, the 2010 healthcare law, in order to prevent so many from being priced out of comprehensive insurance.
Also, disruptions attributed to President Trump’s actions destabilized insurance markets. FactCheck.org reported that insurance companies reacted to the destabilization by raising premiums. The Center on Budget and Policy Priorities keeps a timeline of the Administration’s actions to undermine the ACA that destabilize private insurance markets.
Healthy consumers buying healthcare sharing ministry plans take a risk. The 20 Something Finance website warns its readers about healthcare sharing ministries. “In other words, these are self-pay programs that may reimburse you after the fact if someone voluntarily chooses to do so.” (Emphasis is theirs.) The blog goes on to list the many reasons healthcare sharing plans are risky.
Renee thought she was buying real insurance when she consulted a broker. He asked her a bunch of questions. “I can't remember all of the questions, but the broker said there were four I needed to answer yes. One was ‘Do I believe in a higher power?’ Another was something like ‘Did I believe I was responsible for taking care of my own health?’ I remember the broker was excited because he said so many older clients of his couldn't qualify for this insurance because they had pre-existing conditions and I didn't. It seems like he did read a list of medical problems and I had to answer yes or no as to whether I had the condition or not.”
After meeting with the broker, Renee still had no idea she wasn’t buying real insurance. We only just figured that out together after I interviewed her. I started writing this as an association plan insurance story. After the first draft, something wasn’t adding up. A bit more digging, and Renee realized she was in a healthcare sharing ministry. Her broker did not spell it out for her.
Renee’s healthcare sharing ministry plan did not cover cancer treatments for the first year. “We should have known better. We should have read everything.”
Renee may be a bit hard on herself. She trusted her broker, was not schooled in our flawed healthcare system, and saw no reason to suspect she was buying insufficient coverage.
The premium was $500/month. “Affordable,” Renee thought but the plan was untested until she got sick. “Affordable” is a misnomer when an insurance policy does not cover medical services the insured needs. Renee and her husband racked up $60,000 in medical bills because Renee’s healthcare ministry sharing plan did not cover cancer for the first year.
Renee and her husband paid her medical bills themselves while they waited for the ACA marketplace open enrollment period to start. Then Renee dropped her healthcare sharing ministry plan and bought a comprehensive ACA (Obamacare) compliant insurance policy. ACA market plans are required to cover a list of basic essential benefits. Renee was also not discriminated against because she had cancer, a preexisting condition. She could buy any policy and her cancer treatments would be covered on the first day her policy went into effect.
Here is Renee’s story.
(from 2019 Interview)
Retired Psychologist, Age 63, Insured
Renee got health insurance through her husband’s employer-sponsored insurance plan and lost it when her husband retired. Without his job, there was no more insurance through an employer group plan. Renee’s husband moved seamlessly (and affordably) onto Medicare, a federal health insurance program for those 65 and older.
But Renee needed health insurance. She was 61 at the time and too young for Medicare. One illness could bankrupt her and her husband if she risked going uninsured until she reached Medicare’s safety net at 65.
Renee looked at the ACA exchanges. She was eligible. She could buy a policy. She checked all the boxes -- not getting insurance through a job; not getting insurance through a spouse’s job; US citizen and lives in the US; does not qualify for Medicare; is not in prison. But there was another hurdle.
Yes, Renee was eligible to buy insurance through the Obamacare exchanges, but she did not qualify for financial help, a subsidy, to help pay the premiums. Renee and her husband are solidly middle class, but insurance costs still matter. They are in the group that falls off what is called the “subsidy cliff” because Renee’s household income puts her in an income bracket that makes her ineligible for financial help. (President Biden's American Rescue plan temporarily suspends the subsidy cliff for 2021 and 2022.)
Renee looked for other options. She consulted an insurance broker. He pitched a cheaper policy and downplayed the risks. “You’re the perfect candidate for this insurance. You’re healthy. You’ll probably never use this.” Over $60,000 in the debt and a whopping cancer diagnosis later, Renee recounts the broker’s advice and finishes telling the story with “blah blah blah.”
Renee was a 61-year-old woman, not 30, when the broker said she was a perfect candidate for the less comprehensive insurance he was recommending. While 61 is not old, WebMD says that “age is the single biggest predictor of your chances of getting cancer.” Risk for getting cancer jumps after age 50.
“I was diagnosed a few months after getting the policy. The policy would have covered cancer the second year,” Renee said. But not the first year of coverage when she was diagnosed with lung cancer.
Renee did not know that her policy did not cover her medical bills until she was in the middle of her treatments.
She had to have surgery on her arm. The doctors were starting radiation treatments and immunotherapy. Renee called what she thought was her insurance company about not covering the cancer. While they coveed some care for the broken arm, “’Cancer was on us,’ the healthcare sharing ministry rep said.”
“I was scared to death. We’re lucky. We have savings, 401Ks and all that stuff. I think about people who don’t have any kind of cushion to fall back on. I think about those people. And I think about what we went through. I just can’t imagine what it would have been like if we didn’t have savings to pay that off. And we’re still paying it off, by the way. And we’re still accruing bills because not everything is covered by insurance. The largest number of people go bankrupt because of medical bills. I can’t imagine what that is like.”
Renee bought an ACA compliant marketplace plan for $1200/month with a $4,000 deductible the minute the open enrollment period started in her state. There is a second deductible for medicine. (Herein lies the problem. High premiums and deductibles are unaffordable for the average American buying a single policy. The cost drives people to consider skimpier plans without all the essential benefits, plans like healthcare sharing ministry plans. Many end up like Renee – on the hook for services not covered, running into the thousands.)
Renee’s ACA plan went into effect January 1, 2018 “I worked with a navigator to see what policies were available. Easy. She was wonderful.” Renee’s premiums are higher, but her cancer is covered.
Renee also got lucky – if one could call it that – because her auto insurance paid some of her medical bills, those related to the emergency room, since she hit a pole with her car.
Renee had 3 more surgeries on her arm. “My arm needed a plate. That didn’t work and I needed a rod and elbow replacement. It became infected twice.” She was put on a new hormone treatment and long-term antibiotics.
“I slept a lot. Even when I wasn’t sleeping, I wasn’t getting up and moving around.” Once her husband stepped in and took over all the wrangling with the healthcare sharing ministry, insurance companies, hospitals, renegotiating outstanding bills, etc., Renee could focus on getting better. “’He said, ‘Don’t worry. I’ll take care of it.’ I needed that. It was stressful enough trying to find resources for integrative medicine and physical programs that would help me gain my strength.”
Her new insurance did not cover all her medications. Doctors prescribed a $1,000/month hormone treatment not covered by her ACA compliant insurance. She chose an alternative.
The drug Keytruda is sometimes dubbed a miracle drug. It is for Renee. Keytruda is a trademarked name for an immunotherapy drug. Renee had near a 100% expression of a gene that must be present for Keytruda to work. She has responded well. “Keytruda was approved just a few months before I was diagnosed. I was very lucky.”
Renee says that her new insurance “doesn’t cover newer medications. They like the tried and true that are cheaper. But they do cover partial payments on the Keytruda.” Renee thinks that the pharmaceutical companies charge too much for drugs. But she is grateful to Merck. “The first bill that was submitted for immunotherapy was over $100,000. Merck covered it because the hospital asked them to consider me a charity case. And they did!” Renee was, in effect, uninsured because the healthcare sharing ministry plan she had before getting comprehensive insurance did not cover her cancer treatments.
Keytruda continued to be costly even after Renee got real insurance. “Luckily we're only paying about $300 per infusion. And that's for everything. Our last bill was over $137,000. Merck came through for us and paid a major portion. Pharmacy services are at $130,000 per infusion and there are also IV expenses and lab expenses. Still, the hospital gives us a discount and Merck takes care of the Keytruda so we only paid $300. I can't complain about Merck in this instance.”
Renee’s experience shows the uncertainty and serendipity in getting expensive drugs. What if Merck did not waive some of Keytruda’s cost? What would have happened to Renee? How many life-saving drugs are dispensed at such a discount? How are drugs priced? Who lives? Who dies? How many are not getting the medicines they need?
Renee laughs when she hears people say, “You don’t want some bureaucrat coming between you and your doctor.”
“YES! Yes I do!” Renee says. “I’d rather have the government bureaucrat between me and my doctor than a health insurance employee between me and my doctor. The bureaucrat is probably going to approve whatever the doctor says needs to happen.”
Renee has been in remission for about 9 months. She says her doctor goes back and forth between saying, “No evidence of disease” and “remission.” She adds, “Technically, in stage 4 you’re not supposed to go into remission. But with the newer treatments that’s becoming less and less true.”
Renee has become one of the American Lung Association’s Lung Force Heroes. She has gone with the group to Washington DC to lobby our representatives to give research money to the National Institute of Health, and to also warn of the dangers of inadequate coverage.
When asked what she would want others to know from her experience, Renee says, “Try to be aware of symptoms and push your doctor a little more. I think that what was going on in my neck, and the pain in my arm were associated with the tumor. I’d also say to work with your local representatives. Work with your congress people. Get rid of these junk insurance policies and work toward a nationalized system that will actually take care of people.”