(Interview with Belinda's mother 12/ 2013. Oil on linen, 40 ins. x 30 ins.)
Update 2021
This story was written in 2013. Belinda died in 2007. President Obama signed the Affordable Care Act (ACA or Obamacare) into law in 2010. Full implementation of the new healthcare law didn't happen until 2014. Belinda died well before she could have taken advantage of some of the provisions in the ACA designed to protect people like her.
Reference to "Medicaid" and "Emergency Medicaid" pre-date the Affordable Care Act's provision to expand states' Medicaid programs.
YouTube search results for Belinda Bach give us enough video to show us the talent we lost when Belinda died. This portrait still haunts me. The painting is a reminder of what our healthcare system did to sick people before Obamacare. We still have a long way to go.
Belinda was disjointedly insured throughout childhood and uninsured from ages 19-27. She died at 28.
Artist’s Note (2013)
Belinda Bach remained uninsured most of her adult life. She died at 28. Not getting routine and reasonable access to healthcare for a chronic problem was the millstone around her neck that eventually buried her. She didn’t have to die.
It’s time for us as a nation to talk about devising a system where we can access healthcare easily and efficiently from birth to death. Is access to healthcare a human right? If so, then let’s make it available. If not, then explain it so I understand.
Belinda’s mother started sending her daughter her own allergy and asthma medicine, and did without for herself.
The Affordable Care Act gives states latitude for coming up with healthcare systems that do as much, or more than the ACA, and still lets the states keep their ACA funding. It’s called state innovation waiver. The state innovation waver is a tiny sliver in the ACA where big innovative ideas can incubate, and eventually produce a viable US version of single-payer or all-payer systems (in this artist's opinion).
Our society pays a dear price for making access to healthcare so difficult. Can we ever measure the lost contributions from souls we buried too soon like Belinda?
Here is a short interview, and music Belinda scored for a young director’s first film.
Here is Belinda's story.
(from a 2013 interview with Belinda's mother)
Musician, Composer, Actress, Uninsured, Deceased in 2007,
Age 28
THE STORY
Belinda's obituary in the Los Angeles Times excerpted:
BACH, Belinda (June 16, 1979-Nov. 12, 2007) of Los Angeles, CA, singer, songwriter, classical guitarist, composer and DJ, survived by mother, Sharon Bach of Brevard, NC and brother, Jonathan Bach of Los Angeles, CA, preceded in death by father, Oz Bach of 60's pop group, Spanky and Our Gang.
Belinda attended New World School of the Arts in theater in Miami, FL, Interlochen Arts Camp in Michigan, and NC School of the Arts in Winston-Salem. She studied photography at Santa Monica College, made frequent DJ appearances in Los Angeles and Phoenix, AZ and founded the Celebre Noir goth club in Greensboro, NC.
Belinda appeared in theater, musical theater and commercials and composed film music. Her albums include Leaves of December and Ockham's Razor, released independently. She has a presence on YouTube. Other achievements include first place in State Instrumental Competition, Federation of Women's Clubs of NC, 1997, first place, Indigo Girls/Scholastic Competition, 1995, honorable mention, Billboard Song Competition, 1989, first place, JEM Truly Outrageous competition, 1985.
~
Belinda Bach’s life seen through the lens of access to healthcare makes a compelling case for a single-payer healthcare system in the United States, a Medicare-for-all system where a person receives uninterrupted, comprehensive, and affordable healthcare from birth to death.
Lifelong chronic asthma, migraines, pneumonia, allergies, fibromyalgia, psychological stress, and acute liver failure overpowered Belinda Bach, and eventually took her life. Belinda was disjointedly insured throughout childhood and uninsured from ages 19-27. She died at 28.
Belinda's lost her struggle to live life, AND get medical care just to stay alive. We the eavesdroppers benefit from knowing her story, if we are brave enough to admit that what happened to Belinda could happen to us. Thanks to Belinda's mom, Sharon, for sharing Belinda's story with me.
How does a 28 year old woman with chronic asthma end up brain dead after a liver transplant to treat an accidental overdose of acetaminophen? This young soul traveled an inordinate distance in life, and in the US healthcare system.
(A study, oil on canvas, 24 ins. x 20 ins.)
A child born with a chronic illness to a loving family of inconsistent means, and episodic health coverage has a good chance of falling through the cracks. Belinda’s family always managed to patch together treatment for their daughter while she was in their care, but not easily or without consequences.
A grown-up Belinda dragged her body and precarious health into an uninsured adulthood with no compass for finding her way to regular, comprehensive care. I believe consistent, easily accessible healthcare would have lent the support this young woman needed to lift off into a productive adulthood.
As a child and young adult Belinda won awards for her talent in song, dance and theater. We will never know if the staggering amounts of energy spent trying to manage her health in an apathetic system for the uninsured, robbed the world of this exceptional talent.
In my advocacy work for access to healthcare for all, I am often told by those opposed to the Affordable Care Act, a law giving more people access to healthcare, that people will fall through the cracks. Belinda was one of the 43.4 million uninsured in the US in 2007 who fell through the cracks.
~
Here is what the “crack” looks like in a real life, Belinda Bach’s life
~ Belinda’s asthma was diagnosed at 2. She remained a lifelong sufferer.
~Uninsured as a young child, Belinda saw the “country doctor” for $5/visit to treat asthma.
~The family eventually found coverage through mother’s employment until Belinda was in the 5th grade when her mother lost her job. COBRA, the right for a former employee to temporarily buy into a former employer’s group plan, was too expensive. Belinda’s asthma was a preexisting condition. Getting insurance on their own outside of a job was not doable. Insurers could refuse to sell insurance to sick people asking to buy a single policy. Later, the Affordable Care Act banned the practice of insurers discriminating those with preexisting conditions wanting to buy an individual policy.
~Young Belinda remained uninsured but got treated for asthma by a local doctor until the family fell behind in payments. The doctor advised the family to take Belinda to a public hospital.
~Belinda missed many hours of school traveling to the hospital clinic, a half-day ordeal on public transportation. The clinic sold inhalers at a reduced price the family could afford. They had to go.
~In 1992 when Hurricane Andrew hit, pneumonia sent 13 year old Belinda to the hospital. She was uninsured. The bill was $5,000. The family was just over the threshold to qualify for Florida's Medicaid, state-sponsored insurance, for a family of four. Belinda’s mother said, “We qualified for food stamps which we did not want. We wanted insurance.” A lawyer suggested Belinda’s mother get a paper divorce. “The family would qualify for everything,” Belinda’s mom was told. Divorce was not an option.
~Belinda’s mother found out about a program called “Emergency Medicaid.” Medicaid told Belinda’s mother that Belinda’s hospital bill was ONLY $5,000. “It may as well have been $5 million.” Belinda’s mother could not pay it. Emergency Medicaid eventually paid the hospital bill.
~The days in the hospital along with missed school for clinic visits put Belinda behind in her schoolwork. She was ejected from the magnet school for the arts. She returned to her home public school.
~While in middle school Belinda continued seeing doctors at the clinic. Emotional problems emerged. Doctors recommended she see a clinic psychiatrist for self-injury/cutting. Belinda’s mother attributes overwhelming stress as a possible cause - her father’s acting out from post-traumatic stress disorder, and his chronic pain due to an auto accident; mother’s job loss and deteriorating eyesight; being kicked out of drama magnet school; missing school and falling behind; daily grind of “waking up with an elephant on my chest,” Belinda once said to her mother.
~Despite setbacks in middle school, Belinda managed to excel at what she loved. Her mother said that with all that was going on, “Belinda also won an award for the most outstanding drama student in her class.”
Belinda needed braces. “There was no money.” Belinda’s grandmother bartered. She gave the orthodontist her 100 shares of Texaco stock to pay for Belinda’s braces.
~Belinda’s migraines started in puberty. She was allergic to many of the medicines prescribed for migraines at the time. Over-the-counter medications provided little relief. There is a family history of migraines.
~ Belinda kept missing the same class because of pulmonary clinic appointments. Even with a new insurance program for children, CHIP, she was not able to schedule appointments with a private pulmonologist around her school hours. She received a “C” grade in the class, and became ineligible to be in any of the theater productions her junior year.
~In junior year of high school Belinda wrote the music for a friend’s senior project. She continued to excel in drama and music. She was accepted into a prestigious arts camp. She performed Shakespeare and studied classical guitar.
~By the time Belinda was 16, her grandmother died, property taxes were going up, and her father wanted to move. The family moved to North Carolina.
~The weather was colder in NC. Belinda’s asthma worsened. Belinda passed out outside her high school. She was rushed to the hospital.
~The family found an allergist in NC. Belinda stayed current with her shots. She won a state competition for classical guitar, and a school talent contest. Her SAT scores were good; her grades were not.
~Nevertheless, two top-notch universities accepted Belinda, and would have been her first choice. But the family did not have the money to send her. Belinda was also offered, and she accepted a full scholarship for music and theater at a small liberal arts college.
~ CHIP, the health insurance program for kids, ended when Belinda turned 19.
~Belinda attended a college that did not offer students health insurance.
~As a veteran, Belinda’s father was approved for coverage from the Veteran’s Administration. VA coverage included children. A clerical error held up Belinda’s application. Belinda would have had insurance coverage until 23.
~Belinda got pneumonia in college. When Belinda was a sophomore, illness caused her to miss classes. Belinda could not keep up with a full load of class work to retain her scholarship. She was instructed to take a class on the importance of attending classes.
~Belinda applied for Medicaid in her state. She qualified as a student away from home. Her insurance coverage lapsed when she left college and moved. The new county would not approve her.
~Belinda tried to assuage her asthma by moving to California for the warmer weather at her mother’s suggestion. She did not qualify for Medi-Cal, California’s version of Medicaid, a state-run insurance program.
~Belinda got a job at a retail store. She never lasted the 3 months in her new job that she needed to qualify for health benefits. The cycle continued – sick, emergency room, missed work. She got fired.
~Belinda’s mother started sending her daughter her own allergy and asthma medicine, and did without for herself.
~In California, Belinda was diagnosed with fibromyalgia, “A disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.”
~Uninsured, Belinda racked up huge debt, and ruined her credit using the emergency room repeatedly to treat her asthma and chronic pain.
~ “Doctors didn’t call Belinda delusional, but often proclaimed Belinda’s pain, migraines, and frequent vomiting psychogenic or faked” wrote journalist, lawyer, blogger Dwana Bain.
~Belinda was Christian but interested in Wicca. " For most Wiccans, the God and Goddess are seen as complementary polarities in the universe that balance one another, and in this manner they have been compared to the concept of yin and yang found in Taoism." In her medical charts, the doctors wrote that Belinda was “into witchcraft.” Doctors started calling Belinda “delusional.”
~Nearly all of Belinda’s medications contained acetaminophen. Overdoses of acetaminophen can cause liver failure. Former journalist, lawyer, and blogger, Dwana Bain had access to Belinda's medical records. She tells Belinda's medical and personal story in detail in her blog, Dwana Bain: Journalist at Law.
~In 2006 a doctor told Belinda she needed a liver transplant, and wouldn’t last long. Belinda could not get on the transplant list because of “psychosocial issues.” Her liver responded to a drug administered for liver failure. She staved off the need for a transplant.
~Uninsured, Belinda could not get follow-up care. “The doctor noted, ‘We are unable to follow this patient in our clinics because she has no insurance.’ "
~By Sept. 2006 Belinda had received a Medi-Cal insurance card from the state of California.
~Belinda’s liver failed again in July 2007. By Sept. 2007 Belinda was back on Vicodin which contains acetaminophen. The insurance did not cover the alternative for treating fibromyalgia. The insurance also did not cover her asthma inhaler.
~ On Halloween 2007 Belinda experienced nausea, vomiting, and crippling pain. She called 911. A doctor examined her and released her with a prognosis of gastritis. Later, Belinda collapsed while shopping for food with a friend. A stranger in the store called 911.
~Lawyer and journalist, Dwana Bain, wrote in a story about Belinda on her blog, “Unconscious and on a ventilator, she looked so different from Sharon’s pretty daughter. Her face and neck were grotesquely swollen. Her arms and legs were swollen too. By then, hepatic encephalopathy – a sign of severe liver impairment – had set in. Belinda was suffering global swelling of the brain”…Belinda was young, the doctor told her. The transplant was her only chance."
~Belinda was put into an induced coma after surgery. On Nov. 10 she was declared brain dead. Her mother agreed to donate her daughter’s organs. Belinda was removed from the ventilator and died from end-stage liver failure due to an accidental overdose of acetaminophen.
~Belinda remained uninsured from ages 19-27. She died at 28. Search “Belinda Bach” on YouTube for video of Belinda singing.