MS Diagnosis. Lost Job. Every Decision is About Health Benefits. Bankrupt in 12 Years.


(Interview 11/ 2011. Oil on linen, 40 ins. x 30 ins.)


Update 2021

I heard from Eva. Good news. "I’m well. Employed and insured! I’m working remotely reviewing informed consent documents for clinical trials."


Eva's story takes place before the Affordable Care Act (ACA) was fully implemented in 2014. The healthcare reform law would have changed her life's trajectory. After losing her job with benefits, Eva could have purchased an individual policy on an online marketplace and very likely gotten financial help to do so. Eva said that since her Multiple Sclerosis diagnosis in 1999, having good health insurance has driven her every decision. She needed expensive treatments she could not get without health insurance. And the only way she saw to getting those health benefits was to have a job that provided them. It's been hard.


"The psychiatrist asked me if I had any ‘suicidal ideations.’” Eva confided that sometimes she sees the train coming and wonders if she should jump. “Maybe it would be quick then maybe it wouldn’t be.” Eva says she could never do that to her daughters who have been through so much already.

I painted this portrait in 2011. I started Art As Social Inquiry in 2008. I was only 3 years into the project. I had not fully embraced the Artist Note section of each portrait story. I was just beginning to form opinions although I probably wasn't ready to be a bullhorn yet...


But I was getting close. When Eva applied for a less stressful position in the same company --her Multiple Sclerosis systems were affecting her memory -- the company said she had resigned. She fought hard for another position. She took a 25% pay cut.

“But at least I had the benefits. Since my diagnosis in 1999, having insurance has been foremost in my mind. Always.”

Eva jumped job to job for 12 years trying to keep health benefits. She finally went bankrupt. The psychiatrist asked me if I had any ‘suicidal ideations.’” Eva confided that sometimes she sees the train coming and wonders if she should jump. “Maybe it would be quick then maybe it wouldn’t be.” Eva said she could never do that to her daughters who have been through so much already.


~

Congress passed the Affordable Care Act in 2010. I supported Obamacare by late 2010. I had taken some time to study the new law before endorsing it.


Around this time, late 2011, I remember hearing the news on tv that the US Supreme Court would hear a challenge to the new healthcare law's constitutionality. Something snapped in me. I couldn't believe it. The project was young, but I still had completed a couple dozen portrait stories in the healthcare painting series. Word-of-mouth about my project was spreading. I was also hearing many more stories than I could ever paint. I was angry. People NEED reform," I thought. My mind goaded me, "Well what are YOU going to do about it?"

I yelled at the tv. "I AM GOING STRAIGHT TO WASHINGTON DC AND PUTTING THESE PORTRAITS IN FRONT OF THE JUSTICES' FACES. WE NEED THIS LAW. PEOPLE NEED HELP GETTING HEALTHCARE.

And so began the 5-month standing in front of the US Supreme Court and the Capitol buildings in Washington DC. Pictures here and here.


I remember thinking the painting was OK when I finished it but it was true to Eva so I kept it. Ten years later, I think the painting is perfect. I see Eva's spirit loud and clear in the painting. And I like the paint strokes. Every painting marks a moment in time. I will never be the same person or painter from one painting to the next. It is nice to look back and revisit my former painter self.



I stood for 5 months, 2-3 days/week, 5 hours/day from January 2012 through May 2012.

Sometimes it was empty & wet... and just me... and the police.

Other times, crowded... with interesting sights... and always somebody ready to talk.


 

A study. Oil on canvas, 24 ins. x 20 ins.

Quality Assurance Associate, Age 48, Insured

Eva has always been insured through her various employers’ group policies. She had a Preferred Provider Network (PPO) policy when she was diagnosed with Multiple Sclerosis, and then a High Deductible Health Plan (HDHP) with a Health Saving Account (HSA).


While married, Eva and her husband had jobs on the West and East coasts. A great job opened up for her. The family resettled on the East coast.


The couple eventually divorced while Eva was still earning a good living. In 1999 Eva was insured through her job as an Assistant Director in Business Development. Stress mounted on two fronts. At work Eva managed a staff of four and had constant deadlines. At home she cared for two small children and was going through a divorce.

At this time Eva was experiencing cognitive and memory issues. She had a hard time remembering dates and focusing. Her co-workers were starting to notice.


One morning the Eva was putting on her sock and noticed that her foot was asleep. Days later Eva felt numbness in her right arm and in the fingers of her right hand. Her family doctor ordered tests. Her insurance was through her employer's group plan.


Eva’s employer deducted money from her paycheck to cover her insurance premium contribution. Eva said she must have felt it was fair because she doesn’t remember how much she paid. She recalls not worrying about the insurance and had no concerns about scheduling doctors’ appointments


The tests came back negative. Doctors ordered a brain MRI. The test showed Eva had Multiple Sclerosis. She thought, “Life as I know it is over.” The insurance never crossed my mind at this time.


Eva’s ex-husband insisted on a second opinion. She went to a top-notch university hospital, had a spinal tap and a second MRI. She does not recall being worried about her insurance coverage. The Multiple Sclerosis diagnosis was confirmed.


Three FDA approved drugs were available at that time for the treatment of MS . The National Multiple Sclerosis Society (NMSS) released information showing that these drugs, if taken consistently during periods of remission as well as relapse, slowed or delayed the progression of the disease. With this information, the NMSS issued a strong recommendation that these FDA approved “disease modifying agents” be prescribed to patients with MS as soon as possible after diagnosis. Eva said that without this NMSS recommendation her insurer would not have paid for some of the her drugs. The prescribed drugs cost $1,000/month. Eva was fortunate her insurance covered her treatment.


Getting the drugs a person needs, however, is complicated. The National Center on Biotechnology information issued a report saying,"Restrictions on access created by insurance companies often render shared decision-making between the patient and neurologist an exercise in futility." Dr. William Bennet associate professor of pediatrics writes a compelling opinion piece in the Washington Post entitled, Insurance companies aren’t doctors. So why do we keep letting them practice medicine?


~

Eva's boss was starting to notice her forgetfulness and suggested she take 6 months off. Eva qualified for short-term disability benefits. The time off was very helpful. Eva’s symptoms stabilized. She knew she could not go back to the same job. The pressure would cause a flare-up.


Eva applied for a different position in the company. She got a letter from the human resources department saying she had chosen to resign her position. “They were essentially saying ‘goodbye.“ Eva said.


“NOW I start worrying about insurance. I lost my job which meant I would lose my health insurance. I want to be a productive member of society. I wanted a job with benefits. I knew I needed insurance every minute of the day.”


Eva fought for a lesser position in the company and took a 25% pay cut. “But at least I had the benefits. Since my diagnosis in 1999, having insurance has been foremost in my mind. Always.” Even when a patient’s MS is in remission, the cost of medications and bi-annual visits to a neurologist is very high.


In March 2006, a company on the West coast acquired Eva's department. The new company kept Eva on as the director of East coast operations. For six months Eva worked long hours establishing the company’s new East coast office.


During this time Eva's MS symptoms flared up. One time she noticed she was slurring her words. She couldn’t eat solid foods because she was constantly biting her cheeks. She noticed one side of her face getting numb. Doctors gave Eva a 3-day course of intravenous steroids at home. There were no insurance issues with the treatment in 2006.


In August 2006 Eva returned to work after a two-week vacation. She was greeted by her new bosses who informed her that her position had been eliminated which meant she would lose her job.


Eva did qualify for COBRA, the opportunity for an employee to continue with the employer's group health plan. Very often the employee pays the her entire premium for the group plan without an employer contribution. Her now former employer, however, agreed to pay Eva's health insurance premiums under COBRA.


This turn of events started the “downward spiral” as Eva puts it. Eva called contacts where she once worked. She got a job as a contract research associate for $50/hour but no health insurance benefits. Her former employer continued to pay her COBRA premiums – but this wouldn’t last.


Eventually Eva found a full-time position with benefits as a project manager. She was earning more as a contract worker but she needed the health insurance. When the project for which she was hired didn’t materialize, Eva said, “I saw the writing on the wall. I’m a well-paid project manager with no project to run.” Depression, also a side effect of one of her MS drugs, set in. She had a neuropsychiatric evaluation done. Eva was very stressed.



From this... to this (face structure corrections)... to this


By 2008 Eva was out of a job.


As before, Eva was able to keep her group health insurance plan from her latest employer as provided for under the COBRA law. Unlike the former employer that paid her premium even though Eva was no longer employed by them, this company required her to pay the full premium. There would be no employer contribution.


In 2008 the Obama administration included subsidies in an economic stimulus package to help the unemployed pay for their COBRA health insurance premiums. Eva was able to qualify for a subsidy bringing her monthly premium to $100. Eva was “very very grateful for the subsidy” since she was unemployed. She remained unemployed for 2 months.


Eva found another high-paying job with benefits as a project manager. During a bid presentation she saw a co-worker “hit a home run.” She thought, “That was me. I’m not that person anymore. I’m in trouble.” Eva did not impress her superiors at the bid presentation and was given a written warning. Just as she was about to disclose to her employer that she had MS, her boss said, “Project management isn’t the thing for you.” Her boss said they would look for another job for her within the company.


Eva had another neuropsychiatric evaluation. The neuropsychologist suggested several accommodations the employer could make for her. He recommended Eva disclose her MS to potential employers in interviews. To which Eva responded, “Are you crazy? Two equal candidates. One has MS and one doesn’t. Who do you think will get hired?”


The company could not accomodate Eva. She was once again out of a job.

Eva spent 14 months looking for a job.


Eva's father, a Spanish national living on a fixed income, sent her money. She stopped paying her mortgage. She applied for mortgage modification. Then she could pay the mortgage but not the taxes. Eva saw the COBRA subsidy from the government's stimulus package coming to an end. She worried she would not be able to afford health insurance.


Eva also has Spanish citizenship through her parents who moved back to Spain in 1995. Her father suggested Eva activate her own Spanish citizenship.


In the back of her mind, Eva knows she can go to Spain for medical treatment but she does not want to leave her children. She has no desire to live in Spain but if emigrating is a last resort to get medical care, she will do it.


In June 2010 Eva found a job. The new job paid 25% less than her previous position, but it came with health insurance. When Eva first took the job, the company offered a PPO, an insurance plan design with a network of providers. The insured pays less if she uses providers in the network.


In Eva's first year with the company, her MS drugs and treatment cost more than $50,000/yr. The company’s premiums skyrocketed.


In 2011 the company changed the insurance offered from the PPO to High Deductible Health Plan (HDHP) with a Health Savings Account (HSA). Eva wonders if the company switched to a cheaper plan in part because of her MS treatment cost.


The HDHP plan featured a lower monthly premium. Eva's employee contribution was $80/month.The employer set up HSA for the employees at a bank. The employer deposited $83/month into the HSA and paid his portion of his employees’ insurance premiums. The employer deposited $1000/year into Eva’s health savings account. Employees could also make automatic deposits to the HSA from their paychecks for a maximum contribution of $3300 per calendar year. After meeting the HDHP's $2500 deductible for in-network services, the insured's in-network medical expenses were covered. (See Eva's statement below.)


~


Eva filed for bankruptcy in 2011. Her out-of-pocket medical expenses were not the major cause of the bankruptcy but they contributed to it. “I felt like I was drowning. No way out” especially after being unemployed for 14 months. Eva had not paid the mortgage in a year.


Eva lived on credit cards for a while. “I’m a hard worker. I made a good living. I want to work. I want to be a productive member of society. I cannot be unemployed for one minute because of insurance. I have pre-existing conditions – depression, hypertension and MS.”


Eva thought she would feel relief after declaring bankruptcy. But she says she doesn’t. Medical bills eat up a lot of her income. She lives paycheck to paycheck.


Eva said, “With a PPO (insurance) there was no issue about medical care. Now it’s up to me to figure out how to get care. I cannot see an out-of-network psychiatrist, but my prescriptions are covered. It’s all very complicated. I am amazed I’m still here.


"The psychiatrist asked me if I had any ‘suicidal ideations.’” Eva confided that sometimes she sees the train coming and wonders if she should jump. “Maybe it would be quick then maybe it wouldn’t be.” Eva says she could never do that to her daughters who have been through so much already.


EVA'S STATEMENT:

On the surface an HSA plan sounds like a good idea … for either healthy people who never go to the doctor, or people with chronic illnesses like me.


Healthy people who rarely go the doctor and contribute wisely to the their HSA will have money in the account to cover the cost of routine doctor's visits - they will be paying the 'out-of-pocket from their HSAs. And if they experience an unexpected medical event and cover the $2500 deductible, the insurance will pay for anything above that amount.


People with chronic illnesses will meet the deductible very quickly because their medical bills might run into the tens of thousands of dollars. The deductible will be met sometimes within the first weeks of the plan year, and then all future medical bills for the year will be covered by the insurance.


The first year I had an HSA, I had to come up with the money to pay the deductible which was met very quickly due to the cost of my MS drugs. I also had to fund the savings account in that same year to cover next year’s deductible. If the insured plans correctly, she will start the next year's plan with enough money in the HSA to cover the $2500 deductible for the new benefit year.


My employer contributes to my HSA, so I do not have the burden of funding the entire deductible. If employers do not contribute to the HSAs, or they continually reduce their contributions to HSAs as a way to control costs, the burden will fall on the employees. This could be a problem for low and middle income wage earners.