Grad Student Self-Diagnosed Before Obamacare. Put Off Tests for Five Years.


(Interview 2/2011. Oil on canvas, 40 ins. x 30 ins.)


Update 2021

My heart skips when I hear from my subjects. It's an I-knew-them-when kind of thing. I feel like I'm reconnecting with old friends. Painting a portrait is an intimate affair.


I painted Diny's portrait in 2011. Her current story illustrates that we have so much more to do to make our system work for everyone. The almost decade and half I have been doing this, I am more convinced that unless the profit motive is reined it, we'll never have a system that truly works for people.


Here is what Diny wrote:

"I’m employed by a large and well regarded hospital in the southwest. The employer health insurance benefits I opted for cover in-network providers. However, In-network providers are limited to those working for the same hospital system.


"If I wanted to see someone in a setting other than that where I work, my insurance would not cover much of it. I can appreciate that a medical system would want to capture the insurance revenue for its thousands of employees, and that the system would reasonably assert that its providers provide a high standard of care. Still, I feel like privacy, liberty, and timeliness of treatment are degraded in this closed loop coverage.


"I guess it’s more than just ‘feeling’ like these are degraded, I know that I would have certain colleagues (appropriately) review my medical charts if I were to seek treatment in their field and they would learn more about my life and health conditions than I would want to share with a colleague.


"I’ve also had 3+ month scheduling wait for a procedure I would have been able to schedule elsewhere much sooner. Additionally, if I were to seek specialized care outside of the system, and that would also be out of network, I’m not sure that my primary provider even could refer me to a specialist in another system, or if that system would accept a referral from outside of their own closed loop. It’s feasible that I’d have to see a primary provider in another system in order to be referred for specialist services there.


"It’s all quite territorial. Insurance always has restrictions, limitations, and pricing arrangements, but my employer also benefits fiscally while I have the option of paying more, either for my own non-employee covered plan or for the use of out of network services. It certainly would be nice if healthcare workers had a choice when it came to healthcare!"


~

Those eyes...right? I did not exaggerate in the painting. I wondered how I would capture their luminescence. As usual I told myself I'll just figure it out when the time comes. How to move forward will just come to me.


As a grad student this subject circumvented the college's requirement to buy the school's health insurance. The deductible was too high. She said she felt uninsured anyway. "So why bother?" She thought


Some serious health problems came up. She self-diagnosed using the internet.

In 2014, the subject sent me an email. “As of March 27, 2014 I am appropriately medically insured and have just started the process of scheduling the variety of medical appointments that I've put off for about five years! I'm not sure how I'll navigate time off work to attend them, but I'm very excited to get a few evaluative procedures that are long overdue!”


Subject was torn about being buried by credit card debt to pay for medical services before healthcare reform.

I stood with Diny's portrait in front of the US Capitol in Washington DC to bear witness. In 2011

2012 Standing in Washington DC to advocate for healthcare as a human right.

many millions were self-diagnosing because they could not afford medical care. I didn't know what the point of standing in DC was until I got there. The portraits drew people, tourists, the press, and sometimes lawmakers into conversations about healthcare they might not otherwise have. I wanted to inspire more thoughtful, in-depth conversations about what was happening to real people, and how they were locked out our healthcare system before healthcare reform.


One thing really stood out for me when I reviewed this portrait story for the 2021 update. We can't measure how thinking about, strategizing, stressing about getting the medical care we need eats up our time and drains our life force. No, there is no sensational horror story here because this subject survived her medical scares.


But Diny experienced prolonged anxiety thinking she might be seriously ill on top of the stress of not being able to know for sure. All that disappeared when the Affordable Care Act opened a pathway for her to get good health insurance. Imagine the time wasted being freaked out.


Being scared-to-death that something is very wrong and then not being able to seek care is the stranglehold I'm talking about when I say the American public lives in quiet desperation. Although the Affordable Care Act has done much to insure millions more, there are still about 29 uninsured people in the US.


 

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

(from a 2011 interview)

Full Time Graduate Student in Clinical Psychology, Age 37, Uninsured


Diny's college requires her to carry health insurance as a matriculating student. School loans can be used to pay for the school insurance. But those same funds cannot be used to purchase insurance other than the school's plan.


The college's insurance coverage has a $1500 deductible, out-of-pocket medical expenses that are not reimbursed by her insurance company.


Diny found a way to circumvent the school's requirement to carry insurance. She cannot afford the $1500 deductible (almost $1800 in 2021 dollars). Diny said she feels "uninsured" anyway.


In 2009 Diny felt a chocking sensation in her neck. She did not go to an endocrinologist because she did not have the money to cover the $1500 deductible. Diny used the internet to self-diagnose.

Diny concluded from her internet research that she did not have hyper or hypo-thyroid symptoms. Diny thought the condition could be glandular since her symptoms disappeared. But she was still worried.


Diny's condition returned in 2010. She saw a local doctor who advised her to go to an endocrinologist. The bills for the doctor, specialist, lab work and MRI came to $650 (about $800 in 2021 dollars).


Unable to afford the additional $850 necessary to satisfy her $1500 deductible, Diny refused further testing. Her research told her that thyroid conditions are seldom treated until severe.


Diny felt guilty and an idiot because she might be ignoring something small that could turn into a big problem like cancer. She reassured herself with the results from the MRI, and the fact that she has no family history of cancer.


Diny asked herself, "What would a responsible person do? I have a VISA card. A lot of people don't ." Diny was torn about seeking care or being buried by credit card debt to pay for medical services.


~


In 2008 Diny had an abnormal pap smear. She got tested at the school clinic. The clinic advised her to go to a private gynecologist.


A gynecologist found the same abnormal results and advised a return visit in 6 months. The bills for the private doctor and testing arrived at about the same time Diny incurred debt from the thyroid exams and testing.


Diny was unwilling to go deeper into debt. After the prescribed 6 month waiting period as per her gynecologist, Diny went to Planned Parenthood, a health center where she could get affordable gynecological care without health insurance. Planned Parenthood did a thorough work-up. Diny got a clean bill of health and, as she put it, "great peace of mind."


Diny hopes to get a job with good health benefits after she graduates. She will celebrate by getting all the medical care she needs.


Postscript (2014)

Diny bought insurance through the Affordable Care Act’s new online marketplace. She sent me this note:

“As of March 27, 2014 I am appropriately medically insured and have just started the process of scheduling the variety of medical appointments that I've put off for about five years! I'm not sure how I'll navigate time off work to attend them, but I'm very excited to get a few evaluative procedures that are long overdue!”