Entrepreneur with Prexisting Condition Got "Creative" before Healthcare Reform


(Interview 10/2013, oil & acrylic on linen 40 x 30 ins.)


Update 2021

I struggled with this painting. I distracted myself by all that doodling in the background. I got carried away or I should say carried off. I loved playing with the dots and dashes. I had spent months doodling on and off but never felt I had captured the sitter's essence. I had to get real with myself. I knew I had to make the painting work at some point . How long could this doodling go on? Or scrap off the paint and start over. The painting had many weeks to set up because I spent so much time doodling. Once I started scraping, a kind of underpainting remained intact and emerged. The subject -- as I remembered him during the interview -- stared back at me. I knew I had him so I kept the painting.


Artist Note (2015) Much has transpired since this interview. The Affordable Care Act was fully implemented in January 1, 2014. The story, however, is still very relevant if we are not to repeat past mistakes. Access to health insurance before the ACA was very difficult for those with preexisting conditions who did not get insurance through a job, no matter socio-economic status. The ACA mandates access to health insurance without regard to preexisting conditions.

Throughout many medical episodes, subject always managed to get insurance, but not without great ingenuity. He needed to buy an individual policy. His preexisting conditions made him either uninsurable or insurable with very high premiums.

The subject said, “I was always at the cusp of losing my insurance and then I would find a way to get it.” With all his pre-existing conditions, the subject found he was uninsurable or insurable at very high rates on the individual market.


I interviewed this subject in 2013 before the Affordable Care Act online marketplaces opened in 2014..


Here is his story

 

A study. Oil on linen, 24 ins. x 18 ins.

(from a 2013 interview)

Entrepreneur, Insured, Age 47

Being an entrepreneur, this subject did not enjoy the steadiness of employer-sponsored insurance. He worked for himself.


He has spent many hours over the years navigating obstacles that come to a person with preexisting conditions trying to keep health insurance.


The subject has been plagued with medical problems since he was a child. He had strep throat for 7 years as an adolescent. He took antibiotics each time. “The drug ruined my gut flora. ”


In college, the subject used over-the-counter products to treat GERD , acid reflux. And for 10 years he took prescriptions to lower stomach acid.


At one point the subject was hospitalized, fed intravenously and treated for ulcerative colitis for 2 weeks until the bleeding stopped. At the last minute he said no to surgery to remove his colon and turned to alternative treatments to restore intestinal health, most notably those outlined in Elaine Gottschall’s book, Breaking the Vicious Cycle.


Later in life, the subject tried a fecal transplant formally known as fecal microbiota transplant and reported good results. The subject has been symptom-free for 5 years. He takes no prescription medicine. He currently spends about $500/month on vitamin supplements, but in the past has spent as much as $1,500/month.

~


After graduate school the subject, then in his 20s, found himself needing vascular surgery. His father urged him to get the surgery.


As the subject was on the gurney being rolled into the operating room, he still did not know if he was pre-certified to have the operation. He went into the OR not knowing if he would come out with a $25,000 hospital bill.


The insurance company finally approved the procedure, after the fact. (The subject does not remember signing a form saying he would pay if the insurance company didn’t. But he was clear going into the operating room that he would pay if he had to.)


The subject worked as a consultant after graduating from business school before co-founding his first venture. He worked 20 hours/ day, 7 days/week for 5 years. His body was breaking down. He suffered panic attacks, shingles, acute pancreatitis, migraines and ulcerative colitis.


Doctors ran test to check for gall stones. The gall stone test (ERCP) was inconclusive but the test triggered an acute pancreatic attack. The subject had just left the hospital only to return writhing in pain and still wearing the hospital wristband. He spent 5 hours in the emergency department from midnight to 5am sitting in a chair waiting to be seen.


~

The subject took his first vacation in four years after successfully raising venture capital. He went to Tibet to ride motorcycles with a group of 10 men and a tour guide. His bike malfunctioned, and he ran off a bridge. He fell 10 feet into a ravine. His head bounced on the rocks as he fell, leaving him unconscious.


The tour operator had a malfunctioning satellite phone. A Japanese tourist bus stopped to help. The tourists gave him a canister of oxygen, and piled jackets on top of him to prevent hypothermia. He was loaded into a support van with his head bouncing for the six hour ride back to Lhasa. There he took a flight to Katmandu where, at the clinic, the subject was told he had fractured his neck at C-6. "They gave me a soft collar, some Vicodin, and a release form to sign before leaving." The subject had an American Express platinum card that provided travel accident insurance but AMEX refused to provide any help.


The subject managed to get on a Pakistani International Airlines to Karachi, and then a flight to London. He first took Vicodin for the London to New York leg of the trip. He had $4 left in his pocket.


In New York, the subject was given a hard cervical collar. He kept saying to himself, “Something isn’t right.” He had cognitive impairment and problems with his vision. “I was a really smart guy. I know my cognition is off. I took tests and scored well but I knew I wasn’t right.”


The subject had memory loss and a diminution of cognitive function, vision and motor skills. Twelve years later he was diagnosed and treated for traumatic brain injury (TBI). He is addressing these problems with therapies developed for many soldiers returning home with TBI.


The subject suffers from fibromyalgia and chronic fatigue due to the C-6 spinal fracture. He suffered emotional distress from watching the NYC's Twin Towers fall on 9/11. He could see the attack from his apartment. He attributes his witnessing the 9/11 tragedy, and the side effects from taking prednisone for 6 months for ulcerative colitis, for exacerbating his already frail health.


The subject hasn’t worked in 15 years. He finally joined a fibromyalgia support group because he “felt like I was alone on an island.” The experience has been “surprisingly good.” He is the only one in the group not on pain medication.


The subject recently had children. “I knew having them would be difficult and tax my system.” Sometimes he can’t think, doesn’t know where he is, and is overtired. “Having kids is a physical setback but worth it.”


~


The Insurance

Throughout many medical episodes, the subject always managed to get insurance, but not without great ingenuity. He needed to buy an individual policy. His preexisting conditions made him either uninsurable or insurable with very high premiums. (The Affordable Care Act had not yet been passed.)


The subject obtained insurance through his school. After finishing graduate school, he took a job with a consulting company that provided health benefits. He used this coverage to get vascular surgery in his 20s.


In the mid-90s the subject became an entrepreneur founding a social network. He was able to continue group insurance from his former job under the COBRA law. However, COBRA coverage through his former employer’s group plan was ending.


Still at his start-up, and with COBRA insurance coverage from his previous job expiring, the subject discovered was able to outsource HR function to a co-employer. The co-employer would technically be co-employing the company’s workers, and as such could provide group health benefits. The co-employer provided benefits for the employees while the subject ran his business. The cost for this arrangement was an administrative fee of $150 per employee plus the cost of the premium. This service is generally for smaller businesses of about 4-40 people.


“It’s hard for businesses of this size to handle the HR so they attach to a larger group. I could get insurance at a discounted rate.”


The insurance carrier the subject had via his co-employer arrangement was “lousy.” The subject would submit a claim, and it would be rejected. “The reps are trained to reject out-of-network claims first. Claims needed to be resubmitted two and three times, often times taking close to a year.”


The subject asked the co-insurer to fight with the insurance company on his behalf. This practice of rejecting claims and making policy-holders jump through administrative hoops to get claims paid resulted in a class action suit of which subject was a part. He found $22,000 worth of unpaid claims in his paperwork. He received $600 from the class action suit.


The subject sold his business and was able to keep insurance through his start-up’s co-employer arrangement due to the COBRA law allowing him to continue paying the premiums temporarily.


The subject invested in a new company and was able to get group insurance through them. Insurance in-network was good but the out-of-network was not. The subject described coverage as “horrible.” Eventually, the company in which he was an investor changed insurance companies. Nevertheless, the subject still found himself out-of-network since he lived in another state and was responsible for a large chunk of his medical expenses. The subject paid a $4,000 deductible then a percentage of costs after that. He thinks there was an out-of-pocket limit but doesn’t recall what it was.


The subject discovered that he could reduce his out-of-pocket costs by ordering his blood tests online. The online companies have relationships with brick and mortar labs. He gets the results online at reduced rates. The results say “For Entertainment Purposes Only.”


The subject has had many preexisting conditions. Navigating the insurance world with pre-existing conditions has been difficult, especially without the ability to earn a living. One insurance company told him he was uninsurable unless he got his colon removed.


The subject muses about insurance and the healthcare industry. “There is a conflict of interest. Insurance companies have to find a way not to pay claims or go broke.” He would like to see “alignment between interest in making people healthy and seeing insurance companies grow by word of mouth. “ The subject explains that since insurance is secured through employers, the CEOS (the employers to whom insurance is sold) only care about how cheap an insurance product is.


“If I buy insurance on the marketplace I would probably get the bronze plan with the maximum out-of-pocket. I only need insurance for catastrophes.” The subject has found success using alternative treatments which insurance policies do not cover.