Sunday, March 2, 2014

Every Woman Counts

Maria is a very quiet woman. Una mujer muy tranquila.

I have never heard her complain. Not once. Not when I examined the drain left in the place where her left breast had once been, not when her eyebrows disappeared, not when her skin sloughed off in layers under the blistering burn of radiation. Never.

Most questions I ask her, even open-ended ones, are answered with a shy nod or a few soft-spoken words. She has a pursed smile and an awkward shrug of both her shoulders when she is uncomfortable. When I ask her how she is doing, she always has the same response, "Bien, doctora".  To call her understated is an understatement itself.

The day I met her--almost five years ago now--is an indelible memory-- one that will be part of my physician-consciousness forever. Maria walked into the residency training clinic where I was literally pretending to be a doctor and told one of the front office workers she needed an appointment. She was having "a breast problem". An astute receptionist picked up on the understated urgency in her face and stuck her in an opening in my schedule that afternoon. Maria waited for a couple of hours before she was finally roomed, and when I knocked on the door, I had little idea of what was on the other side.

After I introduced myself, Maria told me that she had un problema with her breast that she had been ignoring. She needed help. Her Spanish was a little challenging to understand, and as such, I wasn't quite certain exactly what she was trying to tell me. But when Maria lifted her shirt, it was clear to me that the "breast problem" was not something minor. The Spanish no longer mattered.

Breast cancer. Visible breast cancer. A terrible oozing mess of abnormal tissue, red and dimpled and irritated and just about the ugliest site you can imagine. Cancer that had grown from a seed much deeper in her left breast, enlarged slowly over time (probably years), and eventually eaten from its origins up through her skin-- until she could ignore it no longer. Cancer looks just like you might imagine cancer would look like-- hideous. Undeniably gross.

These are the reasons I imagine Maria ignored her breast cancer.

Initially, she didn't know what it could be.
After all, most of us haven't been to medical school. We can convince ourselves in the middle of the night that we have foot cancer only to discover with the sunrise that it's just a blister on our foot. Most of us also delay seeking treatment-- I am going on eight weeks of a tooth ache and still have managed to avoid making myself a dentist appointment to evaluate that ache.

She was taking care of her family and ignored her own needs in the context of her family's needs
After all, that's what plenty of mothers do on most days of the week-- you know who you are: you're the mama that should really work today out but instead you go to the grocery store to stock up on lunch materials for your kids. You should go get your pap smear but it's lower down on the priority list than taking Junior to soccer practice or to library reading time. You have been meaning to pick yourself up a few new pair of undies but always find yourself in the kids section of the store checking out the clearance items rather than in the hot mama sexy lingerie section.

Once it started to become more clear, she got scared.
Fear is a huge barrier for all of us. It's hard to understand the immense power of fear. I was speaking to a local breast surgeon last week, and she actually said "I liken women with open breast cancer tumors to situations where people need to drop children off in safe drop zones, no questions asked. It just seems to get harder and harder for women to access care as the cancer gets grosser and more obvious. I dream of having a sign on my door that says, 'Please bring your horrible tumor here. I promise I won't ask why you didn't come sooner."

She didn't speak any English. 
When is the last time you got on the phone with some bureaucratic agency (think DMV or your own dear health insurance company) to try to make yourself an appointment or clarify an oblique notice you got in the mail? You were probably on hold forever or stuck in some crazy bramble of phone-tree hell. Just imagine doing that in another language. Virtually impossible.

She had no health insurance
Fear of a diagnosis is one thing, fear of a medical bill is an entirely other beast. As Covered California continues to take hold here, I am happy to see some people having access to insurance for the first time in years (or even ever), but undocumented immigrants are completely ignored in our new legislation. Hopefully, there will be political will in the coming years to change that (see more here). Thankfully, in California, we have a wonderful state-based program called "Every Woman Counts", also known as the Cancer Detection Program (CDP) and its sister program Cancer Treatment Program (CTP). Both of these wonderful safety net programs were essential in getting Maria expedited diagnosis and care. Thank goodness for our safety net! I really hope everyone knows how important it is that there are programs in place. Please don't disregard the power of the safety net.
                                                                       ***

I am happy to report that it has been over four years since Maria's diagnosis, and though she went through a lot during that first year, she is currently cancer free. She continues to do well physically and emotionally. She still never complains.

Our health care system is pretty ridiculous, even for well-educated, English-speaking, documented citizens with excellent top-of-the-mark health insurance coverage. It's scary, often overwhelming, difficult to navigate, and generally not user-friendly. And yet, there are some amazing gems that enable providers like myself to continue doing the work we do. Every Woman Counts is one of those gems-- designed to offer appropriate screening AND treatment for vulnerable populations. It is funded by a combination of federal funds and augmented California tobacco taxes. Woo hoo!

It's awesome for me to discover that there are similar such cancer detection and treatment programs available in all 50 states (see link here). It's administered differently in every state, but the CDC provides matching funds and support for these programs. Thank goodness they exist! But, unfortunately, this program are limited to specific diseases, namely breast and cervical cancer.

Now with our new health care legislation, more gaps are being closed, but there is still much work to be done. Don't you think the next best step is to figure out a way to provide similarly excellent care for all people in our country? And not just for their breasts and their cervices, but perhaps also for their migraines, diabetes, depression, heart disease, and even ingrown toenails.

I do.



Additional references:
http://www.cancer.org/healthy/findcancerearly/womenshealth/earlydetectionofspecificcancers/nbccedp
http://healthpolicy.ucla.edu/publications/Documents/PDF/undocumentedreport-aug2013.pdf
http://www.huffingtonpost.com/2014/01/28/undocumented-immigrants-health-care_n_4679348.html

1 comment:

  1. Beautiful piece, Vero! It is nice to read about something gone right in this health care "system" of ours...

    ReplyDelete