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Lung Disease. Aged Out of Medicaid in Florida, a Non-Expansion State. $6,000/month Needed for Drugs

Theresa BrownGold's painting "Aged Out of Medicaid" for her art project, Art As Social Inquiry.

(Interview 9/2015. Oil on canvas, 40 ins. x 30 ins.)

Update 2021

I expect very few people to read the portrait stories to the end. So I'm giving you the punchlines in this short update.

I heard from Gen's mom to fill in some details but I haven't spoken to Gen. I've seen pictures of her baby. Life has its joys! Gen is focused on her family now and not active in healthcare advocacy. I'll respect her privacy. Gen's mom assured me Gen would be fine if I continue to use her name.

Gen graduated from vocational school with an automotive technology degree. Her grades and recommendations were excellent. She had no problem finding a job after graduation. She was working but still uninsured. The job's health benefits did not start right away.

Gen could not hold onto the job.

The state terminated her state/federal Medicaid health insurance when she turned 21. She was deemed stable. Gen remained uninsured for the last few months of school into her new job.

Gen had no access to her expensive meds and lung equipment when she aged off Florida's traditional Medicaid (not expanded Medicaid) insurance program. Medicaid in Florida is a state/federal program serving narrow slivers of the population. As a child, this subject qualified. She was a child and her family was low-income.

Without health insurance to cover her medicine and breathing machines, Gen got very sick, very quickly, and could not go to work. She lost her job. Her mom said Gen "struggled without coverage and medications, and constant ER visits."

Gen has chronic lung problems. Her youth and vivaciousness mask her very serious condition. She is on 6 medications and 3 machines to help her breath. It’s a lot. But with medical treatment and monitoring, she leads a very productive life. Without treatment to maintain her health, she knows she can die.

Gen’s mom substitutes her daughter's medicine with Robitussin cough syrup and a glass of Alka-Seltzer. They cannot afford the medicine without health insurance.

FLORIDA DID NOT EXPAND MEDICAID as per the Affordable Care Act. The subject could have moved from her traditional Medicaid into an expanded Medicaid program after she grew up and got a job without health benefits. Expanded Medicaid determines eligibility based on income and not extenuating circumstances like being pregnant, blind or disabled.

Gen's medicines cost over $6,000/month – she takes 6 medications. She also suffers from allergies, and carries an EpiPen at all times to treat anaphylactic shock. She has an oxygen machine she uses when symptoms flare up. And she relies on a sleep apnea device to keep her airways open. The subject recently got braces. She was told her overbite was affecting her airways. Her mom said, “She had to get them, or she wouldn’t be able to breath.”

Gen COULD HAVE continued UNINTERRUPTED treatments AND KEPT HER JOB if the political-powers-that-be expanded Medicaid as per the Affordable Care Act. Gen could have gently stepped into the Medicaid expansion pool, maintained her health, and kept working.

But NOOOOOOOOO...Republican hacks had to play politics with this subject's life by not expanding Medicaid. She lost her job because her health deteriorated once the state cut off access to healthcare.

I am not privy to all the sensitive details in this young woman's life today. I know this. Gen aged off her traditional Medicaid insurance in a state that did not expand Medicaid. I know she got very sick when she lost access to her lung medicine and breathing machines. She became too sick to show up for work on a regular basis. I know she had a child after we lost touch. I know being low income and pregnant would bump her back onto Medicaid in her state and give her access to meds, etc. But I have NO idea if that happened.

I know this for sure. It was too hard for Gen to get life-saving treatment as a young, educated, low-income, employed woman when she aged off the state's Medicaid insurance -- a life-saving healthcare plan she had access to as a child and could not get as an adult in her state.

I know expanded Medicaid as per a provision in the Affordable Care Act could have allowed this subject to move with ease into adulthood without losing life-sustaining medical care.

ASI’s many portrait stories leave me wondering why health insurance has to be so complicated. The state powers-that-be deemed her stable.

Yes, she was stable because she received ongoing treatment. Do we stop feeding ourselves because we are stabilized after breakfast? If we stop eating long enough, we are no longer stable. We die.

So why was this young woman kicked off Medicaid before she could secure private insurance through a job or another way after she aged off traditional Medicaid?

“Everybody in, nobody out," the rallying cry of single-payer advocates, seems a more humane system when we see the havoc wreaked in individual lives that our out.

The voters in Medicaid Expansion holdout states are continuing to apply pressure at the ballot box to see Medicaid expanded in their states. The Affordable Care Act amply funded its Medicaid Expansion provision. In 2021 President Biden sweetened the pot further by adding even more funding to attract holdout states. The Supreme Court made expanding states' Medicaid programs optional.

Florida where this subject lives is one of the 12 remaining holdout states.

I explain the Medicaid coverage gap in the 2015 Artist Note (below). For the subjects story jump below the Artist Note.

Artist Note (from 2015)

My hope is this uninsured young woman does not die before she graduates from automotive repair school, and gets a full-time job with health insurance benefits.

Her teenage years were marked by 9 bouts of pneumonia. At 17 years old, the doctors finally removed 40% of her right lung.

This subject's story is what one life looks like in the coverage gap. States that have not expanded their Medicaid programs push low income people, many millions, into the uninsured pool. It’s called the Medicaid coverage gap.

The Affordable Care Act laid out a blue print for states to expand their Medicaid programs and included a healthy chunk of money for the them to do it. Expanded Medicaid reaches low-income working age adults. States always ran their old Medicaid programs but eligibily rules were so narrow, millions of low-income workers did not qualify for the program. Expanded Medicaid solves that problem.

The Center for Budget and Policy Priorities explains how people like this subject fall into the gap. “They make too little money to qualify for tax credits to purchase health insurance on, and too much to qualify for Medicaid coverage. They are stuck in the 'gap' with no affordable insurance options." This short video explains.

Medicaid expansion never happened in Florida. The US Supreme Court made the ACA’s Medicaid expansion provision optional. Some Republican governors, buoyed by ideological fervor, have refused to expand their Medicaid programs, leaving this subject and 3 million other low-income people nationwide uninsured.

When I called the this subject's home in late January 2016, her mom told me Gen had been wheezing and coughing for 3 days. “Please don’t get sick before graduation,” she told her daughter, the exasperation evident.

Gen's mom substitutes her daughter's medicine with Robitussin cough syrup and a glass of Alka-Seltzer. They cannot afford the medicine without health insurance.

Gen's deteriorating health gives meaning to a number in a column. But this woman isn’t a statistic. She is a real person. Our shared humanity is reason enough for us to look closely at our disjointed system for accessing healthcare, and to ask ourselves, “How can we make accessing healthcare real for everyone in the United States?”

Our peer nations do much better on this score. The US prides itself on being the best. Waving the checkered winner’s flag, when unearned and undeserved – as is the case in achieving access to healthcare for all -- reads as self-delusion, arrogance, and fraud. We are better than having citizens like Gen floundering to find medicine. We can do better.

Here is Gen's story.


Theresa BrownGold's painting "Aged Out of Medicaid" for her art project, Art As Social Inquiry.
A study. Oil on canvas, 24 ins. x 20 ins.

(from a 2015 interview)

Full-Time Auto Repair Student at a Technical Education Center, Age 21, Uninsured

Gen suffers from a lung disease called middle lobe syndrome. She has had asthma since she was 8 months old along with other related problems like shortness-of-breath and coughing spells throughout her childhood. Gen was intubated twice in her life and could have died.

Gen's teenage years were marked by 9 bouts of pneumonia. At 17 years old, the doctors finally removed 40% of her right lung.

Today, Gen requires medicine medical equipment to help her breath. She can no longer get her medicine because she aged out of Florida’s Medicaid program in October 2015 when she turned 21.

The Medicaid program's deciders deemed her stable and not sick enough to continue on Medicaid as an adult.

If the subject goes without medicine for too long, she will become sick enough to get back on the program – that is, IF Medicaid can process her paperwork fast enough to get her reenrolled before she dies. If she were to become pregnant, however, Medicaid would welcome her back into the program.

Gen received her last prescriptions in October 2015 to cover her November 2015 medical needs. She is trying to make her last inhaler last 4 months with the hope that graduation brings a full-time job with health benefits. Graduation happens in February 2016.


As of December 2015, Gen has been unable to get medicine. She and her family have been brainstorming on how to keep her alive through February 2016 without the medicines she desperately needs to function. Her mom has posted repeated pleas for help for her daughter on Facebook with links to a GoFundMe page.

Since losing her insurance, and the treatment it buys, Gen has had 2 upper respiratory infections, and missed a big chunk of school. Teachers are helping her make up the work. Her pulmonologist was good enough to see her at no charge. Antibiotics addressed the infection.

Gen remains vulnerable to repeated infections because she is not on her regular drug regimen. Uninterrupted treatment makes breathing easier for her.

Gen uses a machine called an Intrapulmonary Percussive Ventilator to take Albuterol and Pulmozyme, drugs that help her breath.

Gen’s mom feels lucky that the medical device company has not reclaimed the machine yet. She confided, however, that she did not have the money to buy the drugs to insert into the machine. Nevertheless, she wanted to hold onto to the device just in case she gets medicine for her daughter.

Gen's medicines cost over $6,000/month – she takes 6 medications. She also suffers from allergies, and carries an EpiPen at all times to treat anaphylactic shock. She has an oxygen machine she uses when symptoms flare up. And she relies on a sleep apnea device to keep her airways open. Gen recently got braces. She was told her overbite was affecting her airways. Her mom said, “She had to get them, or she wouldn’t be able to breath.”

Braces costing $200/month put a strain on a family whose income is below poverty level. Gen's mom is a single parent, and the sole wage earner in a 4 person household. She supports Gen, a younger daughter, and Gen's grandmother who has health problems. Gen's mother is on the waiting list at her job to get a full-time position which will include health benefits. In the game of chance, however, the full-time position did not open up before Gen's Medicaid benefits expired.

With regular treatment Gen functions very well, even thrives. Losing Medicaid coverage now could be a death sentence.

After graduation at the end of February 2016, Gen expects to get a full-time job with health insurance benefits. She carries a 4.0 GPA. Her teachers gave her rock-solid recommendations. She feels confident she will get a good job –IF she is well.

Close-up, basement painting. Portrait w/ good light vs. portrait painted in the basement

From the series The Basement Paintings.


Gen and her mom moved to Florida when Gen was 11 years old. The family fled an abusive situation and arrived with very little. They qualified for traditional Medicaid insurance but, as new residents, they had to wait 30 days for coverage to start.

During the month-long waiting period in 2005 Gen was rushed to the hospital and admitted for pneumonia. She was in the hospital for 7 days. The hospital bill came to $20,000. It might as well have been $20 million. The family did not have the means to pay. With help from a social worker, the family was able to qualify for the hospital’s charity care program.


Gen aged out of Florida’s Medicaid at 18. She was told she did not meet the criteria under adult guidelines. She is improved and stable. She also did not meet other criteria that would qualify her for adult Medicaid such as having children or being pregnant.

Fortunately, Medicaid had another program for the medically needy called Share–of-Cost


Gen also aged out of this program when she turned 21. Again, she was deemed improved and stable, and apparently not medically needy enough although without medicine and regular treatment Gen’s condition could (and did) deteriorate quickly.

Here is how it works. A person’s share-of-cost cap is based on income. The state set Gen's share of her medical costs at $357/month—but, Gen never actually paid it if her medical expenses were more than $357/month. Once her medical bills exceeded $357 in a given month, Medicaid would pay ALL the costs for the month INCLUDING the $357.

Gen had to prove she was being billed for more than $357/month to get her entire drug bill paid for. Gen's drugs cost over $6,000/month. Gen’s mom proved this every month to get her daughter's drugs covered in full. The paperwork was voluminous and burdensome, but necessary.

In October 2015 Gen turned 21. Medicaid terminated her Share-of-Cost plan. She has been uninsured since November 2015.

Gen and her family would have qualified for insurance through an expanded Medicaid program under the Affordable Care Act. However, Florida did NOT expand their Medicaid program, leaving low-income families like the subject's without a way to get health insurance.

In 2012 the Supreme Court ruled that the healthcare law’s Medicaid expansion provision is optional for states. States like Florida, whose Republican governor opposes the Affordable Care Act on ideological grounds, has not expanded Florida's Medicaid program to include people like this young woman – those who cannot get Medicaid under the old rules; whose incomes are not high enough to permit them to buy a single subsidized insurance policy on the ACA’s online marketplaces; or, those who cannot afford to pay full price for an insurance policy outright.

Without Medicaid expansion, low-income, medically needy like Gen have nowhere to go to get health insurance.

When the United States Supreme Court issued a decision saying that states do not have to include Medicaid Expansion when implementing the ACA, the fallout thundered through a large swath of Florida’s population. According to a Kaiser Family Foundation issue brief, Florida has 537,000 uninsured people who would be covered by Medicaid Expansion (415,000 in 2021)

As of January 2015, Gen remains uninsured and without her medicine to treat her lung problems.


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