Sound Off On Healthcare!

I was diagnosed with breast cancer December 14, 2004. The cancer was Stage 1 DCIS, but there were 2 sites on my left breast, one at about 5 o'clock and one at about 10 o'clock, so it was decided that I should have a modified radical mastectomy.  But the job I had just started said they'd hold my position open for me till I recovered from surgery.

I had the mastectomy on Jan 3, 2005. Less than a week after the drains were removed, I had to have emergency surgery to remove my gall bladder. My workplace then said they "didn't feel comfortable" with holding my job open any longer, so they let me go. At the end of January, the COBRA I had from a previous job ran out. So, there I was with the "launch window" to commence chemo closing and no insurance to pay for it. Thank God for "Project Access", a program for low-income people who need medical help. They got an oncologist to agree to treat me for free till I could get on Medicaid. Also, one of the coordinators I had spoken to suggested I apply for temporary disability with Social Security. It was on the basis of that disability that I got on Medicaid.

Chemotherapy started March 16. I had 4 treatments, ending in June. My primary care provider had detected abnormalities in an abdominal ultrasound she had me take, so my oncologist recommended a uterine biopsy to assure all of us that giving me Tamoxifen would not give me uterine cancer. The biopsy results came back showing at least a pre-cancerous condition, so my OB-GYN recommended a hysterectomy with bilateral salpingo-oophorectomy. This was done on September 9.

During all this, I kept telling myself, "Just get through this, and you can get reconstructive surgery." This would include reconstruction of my left breast and, since I have very large breasts, a reduction of the right one. After all, it was my understanding that practically all insurances approve this surgery since it impacts a woman's emotional and mental health. I made an appointment with a reconstructive surgeon, and was scheduled for surgery on her first available date -- May 9, 2006.

In January, 2006, I got a letter saying that my Medicaid was approved through January 2007. Then, in March, I got another letter saying that, since I hadn't completed and returned their eligibility renewal form, I was being cut off. I had never received the form, and called to tell them so. I got another form and returned it completed. In April, they told me I was being cut off because I wasn't disabled and never was; Medicaid had been granted in error. In fact, I should consider myself lucky if they didn't bill me to recoup the money that had been paid on my behalf. I asked for a "fair hearing" to dispute the decision. (When a fair hearing is requested, no action is taken till the hearing has been held.) 

On May 8, I called the hospital to see when I needed to report the next day. They suggested I call my reconstructive surgeon's office. I was told by the receptionist that the surgery had been cancelled since I had no insurance. That was how I found out that my Medicaid had been cancelled. To this day, I have heard nothing regarding the requested fair hearing, except that I have not been covered since May of 2006.

I applied for Washington state's Basic Health program.  Since we don't have any legal dependants, only actual ones, they wanted to charge me $140 a month premium plus $15 co-pays for office visits and meds. Plus more if the hospital enters the picture. My disabled husband makes $1104 a month SSD, and I worked for ($7.63) minimum wage, 20 hours a week. There was no way we can afford to insure me.

So, I felt betrayed by the system all the way around. In 2006, I was working for the AARP Senior Employment Program, which required me to look for work, along with working at a "host agency" 20 hours a week. Most prospective employers would see on my resume that I didn't work between 12/29/04 and 12/12/06. They didn't seem to care why, they just weren't interested in hiring me. My "host agency" wanted to hire me, but they were under-funded and couldn't afford me at that time. (I finally did get hired on.

I have to buy bras at a specialized boutique, and I can't afford to replace them as often as I should. One of the "anchor teeth" for my partial has been pulled, and the partial should really be replaced, but I can't afford that either.  I have tried to remain positive throughout all this, but it's getting harder all the time. 

The reason I'm telling you all this is that I know my experience with our deeply-flawed health care system isn't unique.  "Divided We Fail" is a new nationwide campaign designed to raise the voices of millions of Americans who believe that healthcare and lifetime financial security are the most pressing domestic issues facing our nation.  I encourage to visit their site http://www.dividedwefail.org/, and tell your own story.  Sign the pledge.  Make your voice heard.