( Interview July 2017, oil and broken glass on canvas, 48 ins. x 30 ins.)
2021 Update
Chiara Alice D’Agostino, 48, of Montclair, New Jersey, passed away on August 4, 2020. Here is her obituary.
Artist Note (2017)
Chiara was riding high. Home from Italy with a master's degree in Italian culture ready to reinvent herself at 43 in NYC after transitioning from her first career as a high school teacher. She wanted a job using her bilingual skills.
Instead, Chiara was thrust into the fight of her life. Cancer struck. And struck again two years later. At 45 Chiara found herself living on $980/month in her mother's apartment struggling to stay alive and defeat metastatic breast cancer.
"Insurance is my number one priority. Insurance drives every decision."
Chiara said what all Art As Social Inquiry subjects say about their illness. Insurance rules their lives.
Not the disease. The insurance. Why is insurance the number one priority for a sick person in the United States?
The United States ranks last among peer nations for access to healthcare and
other metrics. The Commonwealth Fund, a private foundation whose mission is to promote a high-performing healthcare system, reported in a 2017 study. "Key findings: The U.S. ranked last on performance overall, and ranked last or near last on the Access, Administrative Efficiency, Equity, and Health Care Outcomes domains."
Is healthcare a human right in this country? Yes or no?
Chiara is one of the lucky ones. Although she had hoops to jump through that triggered stress and fear on top of a sudden cancer diagnosis , she was able to get insurance due to the healthcare reforms enacted under President Obama's administration.
Chiara's insurance started in September 2014. On October 24, 2014 she found a lump on her breast. Chiara started her cancer treatment immediately as a fully insured New Jersey resident thanks to the Affordable Care Act.
Here is Chiara's story.
(A study, oil on canvas, 24 ins.x 20 ins.)
Blogger, Former High School Italian Teacher, 45, Insured
Chiara D'Agostino's annual check-up, including a mammogram in September 2014, unearthed nothing unusual. A month later, on the eve of her 43rd birthday, Chiara found a 3 cm lump on her breast. A routine mammogram did not detect the tumor because her breasts were too dense. She needed an ultrasound. Doctors determined she had stage triple negative breast cancer. She was 43.
,
"I've had neoadjuvant ACT chemotherapy, a double mastectomy, reconstructive surgery, and 5-6 surgeries to fix the implant infections." In the end, the implants had to be removed altogether. Not the shape I was born into, but I like that I can feel my body. I feel better without the implants. I couldn't feel hugging with implants."
In 2015 the doctors declared, "There was no evidence of active disease."
Then in September 2016 Chiara was diagnosed with stage 4 triple negative breast cancer that spread to the liver, lungs, bones, and lymph nodes. She was accepted into her second clinical trial for metastatic breast cancer, which includes chemotherapy. The treatment lowers her white blood cell count making her vulnerable to infection. "I avoid public places with a large crowd, and if I go, I wear a surgical mask."
Before being diagnosed, Chiara gave up her full time teaching job to pursue a master's degree. "I wanted to work in Manhattan and use my bilingual skills." But her journey took her from graduate with a newly minted masters in Italian Culture to a terminal diagnosis that ultimately strained and ended a relationship. With 10 days to move out, Chiara moved in with a friend for 5 months. She finally had to break the cancer news to her mother who was still reeling from her father's death a month earlier.
"The cancer diagnosis terrified me. I felt hopeless, sick, alone, isolated." Treatment left Chiara too ill to work. Her mother asked a tenant to move out so Chiara could have a place to live.
"I've been single since my mastectomies. I have cats. I rely on my community for help. I use social media to communicate." Chiara started a blog, Beauty Through the Beast (link no longer valid) where she shares her stories. She hopes to be a beacon for those traveling a similar road, and an aid for those wishing to understand the formidable challenges a cancer patient faces. "I have become an ambassador for a few non-profit cancer organizations. I met with legislators on Capital Hill to advocate for metastatic breast cancer funding. I model and use my new body to encourage other women."
THE HEALTH INSURANCE
"Insurance is my number one priority. Insurance drives every decision."
Chiara was insured through her high school teaching job for 6 years. After her teaching contract ended, she pursed a master's degree in Italian. Her study abroad program provided health insurance.
In August 2014, Chiara returned to the United States having completed her graduate studies. Her father was dying and entered hospice care. Amidst the personal upheaval, Chiara's then boyfriend purchased a health insurance policy for her. Chiara promptly got and passed a complete physical.
After her father's passing, and wishing to be independent, Chiara looked into getting insurance on her own. A Google search turned up an 800 number for The Affordable Care Act (ACA), Obamacare.
Chiara does not remember the details from the telephone interview with the healthcare.gov representative. Her circumstances qualified her to get insurance under the Affordable Care Act immediately, most likely through the ACA's Medicaid Expansion provision.
If one qualifies for Medicaid, one can enroll at any time during the year. Chiara was also very fortunate to live in New Jersey, a state that chose to expand their Medicaid program in 2014 as outlined in the Affordable Care Act. A 2012 Supreme Court ruling said that the federal government could not force states to expand their Medicaid programs. And some states did not.
Chiara's insurance started in September 2014. On October 24, 2014 she found a lump on her breast. Chiara started her cancer treatment immediately as a fully insured New Jersey resident thanks to the Affordable Care Act.
Chiara was much too ill to work. By May 2015 she qualified for Social Security Disability payments. The Social Security Administration describes the program this way. "Social Security pays benefits to people who can't work because they have a medical condition that's expected to last at least one year or result in death."
With her work history, which is factored into the calculations for determining the benefit, Chiara qualified for a $1,100/month benefit. She also qualified for $16/month in food stamps. She was living for free in her mother's rental unit after the family asked the tenant to move out. Chiara never dreamed her life could end up here.
After 2 ½ years with MediCAID insurance, she also qualified for MediCARE insurance (my caps). Medicare is usually thought of as an earned benefit for people 65 and older. The disabled, however, also qualify for Medicare 24 months after receiving Social Security Disability benefits. Chiara's Social Security Disability payment was reduced to $980/month after the government deducted her required Medicare contribution once she qualified for Medicare.
Medicare insurance did not cover 100% of Chiara's medical bills. She then became what's known as a dual eligible. What Medicare did not pay, Medicaid did.
The Kaiser Family Foundation reports that about 9 million people in the United States are covered by both Medicare and Medicaid. This number includes low-income seniors as well a people under 65 living with disabilities.
On 9/30/17 Chiara received a letter saying she no longer qualified for Medicaid insurance because her income was $6 over the allowable amount to qualify for the benefit. Of the $980/month Social Security Disability benefit she was getting, Chiara now had to pay about $400 for a Medicare supplemental policy (Medigap) to cover what the Medicaid program used to. She was left with about $600 per month to live on.
This bears repeating. Chiara had to buy a $400 supplemental policy to pay what Medicaid insurance had paid toward her medical bills, but for which she was no longer eligible because her income exceeded the limit by $6.
Chiara reflects. "I'm disappointed that there are so many hoops people have to jump through when they are sick to get what is a human right. But I can't complain because I had Obamacare.
Is healthcare a human right in this country? Yes or no?
This is the last message I got from Chiara before she died.
4/2018 "I'm still on the same clinical trial as when we met. My platelets and white blood count was really suffering, causing delays in treatment, so my oncologist removed the chemo from my treatment and now I remain on the PARP inhibitor (a daily pill) that w=is part of the same clinical trial. (The trial consisted of 2 chemo drugs - carboplatin and taxol and a PARP inhibitor I had to take for one week every 3 weeks. The same trial, they just removed the infusions (carbo and taxol) and are keeping me on the PARP but it's daily). So far, I am NEAD - no evidence of active disease!!!! The last scan (2 weeks ago) showed that and I have another scan in a month, then will get scanned every 2-3 months.
"In addition, I applied for NJ Workability and was accepted into the program I think Nov 2017 (so I only had to pay for Medigap one month). My dates may be off. NJ Workability gives me the opportunity to work a minimum of a certain number of hours (I don't know) and a maximum amount of earning per year (like $60,000). With this program, Medicaid is included at no extra cost. So I'm back to my $1,111.00 a month from Social Security. My job is caring a few hours a week for my mother who has dementia. I was sent papers by the Social Security Administration asking to send paperwork to fill out, a disability review. It was due March 22. I've been overcome with nearly debilitating depression and anxiety since October 2017 and sent the paperwork overnight return receipt on 3/19. Just yesterday I checked the tracking to make sure the $20 package arrived, and it didn't!! So, yesterday evening I started visiting USPS offices and calling them and Social Security in a panic. The SS letter said if they didn't get the paperwork by 3/22 I could lose all of my benefits. That's' where I'm at now, and after I send this to you I'll be on the phone again!
Comments