So, this is one of those mega-questions that I think all of our discussions about how we pay for and organize healthcare should boil down to: How does someone who is uninsured pay for treatment for serious, progressive or terminal illness? Guys, this shouldn’t be a hard question. The answer should reflect the value and theoretical framework that our healthcare infrastructure is based on. But, no surprise here, this is not the case in America. Our currently healthcare system is not based on valuing health, but on valuing profit. American healthcare is concerned more about money made than lives saved, and the answer to this question isn’t easy or simple.
I’m a social worker at a free clinic for those who are working but are uninsured or underinsured. Rita (not her real name) came into my office a month ago. She had short, gelled and spikey brown hair, stood about 5’4” and couldn’t have weighed more than 100 pounds. She was wearing short sleeves that showed off her barbed wire tattoo around her right bicep and a faded rose on her left arm.
She didn’t have an ounce of fat on her, and looked closer to 25 than her actual age of 45, with the exception of her tired eyes. She was the assistant manager of a local 24-hour gas station and once refused to give up her drawer to a man who was robbing the store. This didn’t surprise me. Rita reminded me of a few tough women I’ve known in my life, a few women who have been through some real hardships in life, and I immediately liked her- I immediately cared about her.
As soon as she sat down, Rita warned me that she was “a bitch”, and started to tell me about herself. She just moved back to the city a year ago after spending the past five years with an abusive boyfriend, living in a trailer park in rural Pennsyltucky. Once she got the courage to leave, she moved into an apartment in a housing project that her elderly mother and deteriorating aunt lived in so that she could help take care of them. She loved her job as the assistant manager, especially finding and firing the “scumbag thieves” who stole from the store during their shift.
Rita’s gynecologist, who is a volunteer at our clinic referred her to me. “I found out two days ago that I have cervical cancer and I don’t have insurance”. My heart dropped. I asked her how she was dealing with this news, which she replied that she couldn’t do anything but keep up her normal routine. She hadn’t told the few people she had in her life- her aunt, mother, and co-workers, and wasn’t planning on telling them anytime soon. She had no support group and was trying to figure out what to do on her own. She explained further that she didn’t have insurance from her job- she started as part time and once she moved to full time status they never offered her health insurance. She would be able to enroll in two months when her job offered open enrollment, but even then, the actual coverage wouldn’t start until January 2018. The cancer was progressing fast and her doctor needed to start treatment now.
I didn’t know what to tell her. I knew she made too much to qualify for Medicaid, but I didn’t want to discourage her. I told her to go home and I would call her as soon as I could with a solution. The truth was that I had no idea what the solution would be and was overwhelmed thinking about how this woman who was so full of life was going to die because she couldn’t afford stupid insurance.
Luckily, the answer in this case scenario came easily enough. Pennsylvania’s Medicaid program contracts with The Healthy Women Program which offers a medical assistance to women diagnosed with breast or cervical cancer. The paper work was simple enough- send in 2016’s tax filings, proof of income for this year, and proof of the cancer. I made phone calls all day, and by 5:00 I was able to tell Rita that I had begun her application for medical assistance. I spoke with a representative from the managed care company, who The Healthy Women Program sub-contracts, after I filled out her application and was informed that the processing time would be 5-10 business days. I spent the next day completing the application for Rita, getting all of her paperwork in check, and pestering the Healthy Women Program to send the final application to the County Assistance Office for final approval. I checked in with Rita throughout all of this, and she was a fucking warrior. The weekend went by and Monday morning, Rita told me that her doctor informed her that she was going to need to get a procedure done ASAP and start treatment for the cancer- apparently, the cancer was worse than they originally thought. When I got off the phone with Rita, I got in my car and drove to the County Assistance Office to see what was going on with her application since no one had returned my phone calls. Luckily, I was able to speak with a reluctantly kind case worker and I pleaded for her to expedite Rita’s application. The case worker told me that they didn’t expedite any applications and she couldn’t talk to me at all about Rita’s application due to confidentiality, however the caseworker asked me for Rita’s phone number and called her right there to finish the application process. This caseworker didn’t have to do this, and I am so grateful that she listened to my pleas.
Rita was able to get medical assistance and started treatment by the end of the week. I’ve been keeping in touch with her, and she’s still working even though she’s really tired. She’s going to take FMLA, but wants to wait until she absolutely needs it. The cancer is progressing, but she’s not letting this get her down. I keep telling her that she’s a warrior, and she ends each phone call with thanking me for saving her life. I don’t know if Rita is going to live, but I’m so grateful that she was able to get treatment- it’s the happiest ending I could realistically picture of this scenario.
This wouldn’t have been a happy ending if Rita had a different type of cancer or any other serious or terminal illness. There wouldn’t have been a happy ending if Rita lived in a different state that didn’t have a program like the Healthy Women Program. Not to toot my own horn, but Rita was lucky to be referred to me- had she not had someone who was familiar with the confusing systems of American healthcare, and someone who would advocate for her, I guarantee her application wouldn’t have been processed so quickly. Rita got lucky that there was a program that could help her, and see, that’s the problem right there. No one should have to be “lucky” enough that their progressive illness is one of the few that is covered by specialized, state-administered, programs. Someone who is diagnosed with cervical cancer in Arkansas should be able to receive the same healthcare as a person who is diagnosed in Pennsylvania. People who are dying should automatically be eligible for medical assistance and obtaining this assistance shouldn’t be as complicated as it is now.
So, what is the answer to what happens to people who are uninsured and are diagnosed with a serious, progressive illness? There’s a small chance that there may be a specialized program to help pay for their specific illness. There’s also a small chance that they will be picked as out of thousands of other applications for a scholarship, grant, or charity care from large non-profits and foundations. There’s also a small chance that magic Jesus is gonna skateboard down from the heavens to lay hands and miraculously cure the person immediately. The more likely answer is that they person suffers and then dies. People who are uninsured are already unhealthier than those who are insured. Poor people are at a higher risk for serious illness than the middle class. People who are uninsured aren’t able to access preventative care, and thus will more likely have poor and deteriorating health. This is all such a bummer and such a freaking problem. This is the huge question that should be answered based on a collective value, but there are very few people of power who will admit that America healthcare values money over health. I don’t know what the answer is, and I pray that I don’t have to help anyone else in Rita’s situation who isn’t as lucky as she, but I know that I will, and that that patient is on their way.