Nobody wants to hear Vulva & Cancer in the same sentence

People don’t like to talk about cancer and people (generally) don’t like to talk about vulvas. NOBODY wants to hear both those words in the same sentence. Vulva & Cancer = horror story material. Yes, folks will discuss vaginas all day long (often confusing the anatomy), but we don’t talk about vulvas. But we should because like every other place on our bodies, things can go terribly wrong ‘down there.’

Of course, most women don’t get cancer of the vulva. It is a rare cancer and it usually develops slowly. Vulvar cancers often don't cause early symptoms and are only found on a routine exam. (see How to Do a Self-Exam of the Vulva). Precancerous cells called VIN (vulvar intraepithelial neoplasia) grow first. If a woman with VIN does have a symptom, she may have itching that does not go away or the skin may look different from normal vulvar skin. Almost all women with invasive vulvar cancers will have symptoms of pain and itching. As the cancer grows, she might see or feel a bump that is discolored or feels rough. A woman that has symptoms suspicious of cancer of the vulva must have a biopsy to diagnosis cancer.

I’ll get to the point of why I’m discussing these gruesome facts. Five weeks ago today, I got a call at the W.O.R.T.H. clinic from a woman (R.S.) who she said she was in terrible pain. Her ‘lips’ were throbbing and hurting, she said. She was itching so bad she couldn’t sleep and it hurt to pee. She went to a local health department where a gynecologist saw her and told her he thought she had a cancer of the vulva and that she should see a gynecologist for a biopsy (yeah, that would be funny, if these things didn’t actually happen every minute of every day in the country with supposedly the best health care system in the world). This woman is unemployed and uninsured and such a procedure in a gynecologist’s office could easily cost in excess of $500.00 with lab fees. So, she called a local reduced fee clinic who agreed to see her and set up her appointment for two and ½ months away.

I made her an appointment to come in on our next clinic day to do her biopsy. [Note: though we’ve now cared for hundreds of Georgia women, our clinic still has no funding to help the women of Georgia pay for their Paps or biopsies and women must PROVE to the state that they have cancer before they can receive any assistance anywhere.] I also e-mailed the gyn that she saw at the health department to see if he would help her with pain management until we could get her on Medicaid or on Cancer State Aid assistance. He graciously agreed to see her in his office himself and do her biopsy the following week. I thought that was the end of the story until she called me last week.

She was barely holding it together on the phone; she gave her daughters phone number to call her back because her phone was about to be cut-off. She was begging for help. The gyn performed her biopsy two weeks ago and she does indeed have vulvar cancer. She needs a major surgery to remove the cancer and this gyn referred her to a gynecologic oncologist, a specialist in cancers of the female reproductive system. When I previously spoke to her, I told her about the Cancer State Aid program and how she would get assistance as soon as she got a diagnosis. But, it wasn’t turning out that way for her.

So, the question is:
1. How does an uninsured woman in Georgia get a biopsy for any suspected gyn cancer?
2. If an uninsured woman in Georgia has cancer, what can she do (besides die)?

R.S. told me she called to make her appointment at the gyn oncologists office but they would not see her until she paid a minimum of $336.00, and that was just to talk to the doctor. She doesn’t have any, ANY money. What was she supposed to do? She had pain medicine and was feeling a little bit better physically, but obviously was very anxious and worried and the cancer was growing. The upfront charge didn’t sound right and I assured her we would help her figure this out, or try. As a health care provider who has studied our broken system for many years, I still can't figure it out. How are our uneducated or unconnected patients supposed to advocate for themselves?

I first called the DFCS office of her county to see if they could assist her. This is the voicemail I received “this is Ms. ___, from ____County DFCS, the Medicaid Department returning your call, if you look on needymeds.org, ummm they have some listings of like ummm, like of state programs and I believe I saw one there for cancer specific, otherwise an individual would have to just to apply ummm for Medicaid at their local DFCS office at whatever county they reside in ummm and we would look ummm to see if they are eligible umm for any of our programs, ummm …” I didn’t bother calling DFCS back.

I went to read up more about Cancer State Aid This is a state program that helps provide cancer treatment to uninsured and under-insured, low-income Georgians who have cancer and would benefit most from treatment. Per the website, “patients must make application through the participating Cancer State Aid facility from which treatment is being received. Designated staff at participating facilities will assist the patient in completion of the application and will submit the application to CSA on their behalf.”

I downloaded the list of participating facilities and yes, her gyn oncologist was on the list. I called the Drs office and selected ‘3’ for ‘if you are a health care provider.’ I explained to the receptionist who I was and what I was calling about. I told her that a patient in pain needed assistance applying for cancer state aid and that I needed to speak with their ‘designated staff.’ I was assured that C.A. was the person that I needed to speak with and that she was not in, ‘would I like to leave a message?’ I did, three times, with no response.

I left a weeks worth of unreturned messages with C.A. and the front office staff. I finally called and got C.A. on the phone today. She couldn’t help me with this patient’s problem she explained, because ‘she’s just a secretary.’ I asked C.A. if it was correct that a cancer patient could not get assistance through Cancer State Aid at their facility without paying the $336. She said, ‘no actually it is $448.00, but they get a 25% discount if they pay in cash.’ The $448.00 fee is just to speak with the physician and review the records, then if they decide to have their cancer care here, then they speak with our financial counselor who will run them through “Search America” to see if they qualify for Cancer State Aid. I asked her what a patient who didn’t have $336 or $448 was supposed to do about their cancer. She didn’t know and gave me someone else’s number.

I gave up for tonight and just e-mailed the Cancer State Aid Director. I copied the gyn oncologist to see if he will be appropriately outraged. He’d better be, because that facility probably gets the most of the federal cancer research funding flowing into Georgia. Cancer is a such profitable business; I wonder why our Georgia women are not as valued?

Addendum: The Next Day, I am happy to report that the Cancer State Aid Director called me right back and got this patient scheduled to come in to get her application submitted. Apparently, it is not a requirement that an already diagnosed patient must pay any fees, that is what Cancer State Aid is for after all, but some physicians offices still take advantage of these patients. So, I ask, why can't we educate the referring providers to refer directly to the treating facility, send needed documentation, etc. I wonder if anyone has studied how many uninsured cancer patients in Georgia get no care and does pure bureaucracy have anything to do with it? Does anyone out there care?