Back in June, after I was over $70,000 in debt from medical bills and IV meds that insurance wouldn't cover, getting nowhere with the Appeals Unit at Blue Shield of California, I sent out emails like clockwork trying to find someone in the media who would cover my story in the hopes of convincing Blue Shield to address my case properly. I was at my wit's end with Blue Shield. I've probably logged OVER 85 phone calls with them this year alone. Some of them more painful than others; some of them excruciatingly long with numerous transfers and some of them, which make you want to scream at the person on the other end of the phone and ask if they know what added stress they are causing you when you're basically bombarding your body with incredibly toxic chemo-like meds from an IV pole at your parents' house where you have no friends or life at the age of 33! Ah, but I digress again...
Many phone conversations, emails, 5 months and hours of filming later, a producer at CBS KPIX (local in San Francisco) did a segment on my struggle with covering my medical debt on the news. In fact, there was so much discussion after the FIRST segment, that CBS KPIX aired a second segment to address the controversial nature of the segment.
http://sanfrancisco.cbslocal.com/2010/11/23/healthwatch-bay-area-lyme-disease-patient-fights-insurer/
I am incredibly grateful to CBS KPIX for doing this piece on me. I won't lie - it was exhausting for me to talk about the situation for hours, and do the filming, and gather the hundreds of pages of insurance denials and paperwork for the producer. But worth it. And most of you who know me that I won't give up on anything. I didn't choose to be in the Lymelight, but I am. (God, I wouldn't wish this torturous disease on anyone). And I'll keep fighting them til the end!
After watching with much anticipation (they don't show you what the segment will look like until it airs on TV), my comments to my friends were as follows:
Dear friends,
Glad they did the story and hope it will help my insurance situation, but a bit frustrated that they were perpetuating the most common MYTHS, like saying Lyme disease is USUALLY treated in 1 month and it's rare to have late-stage Lyme like me. WRONG. What was wonderful was the over 35 comments from mostly Lyme patients at the bottom validating this through their own experiences with the disease and with insurance, which resemble mine very closely.
And that ridiculous doctor at UCSF that they interviewed (I understand they have to present both sides), he said that Lyme is treated in 6 weeks. HA! They forgot to mention that Connecticut State Attorney General Richard Blumenthal launched the first antitrust suit against a medical society in the US - against the IDSA/Infectious Disease Society of America (the medical society that master puppeteers these doctors and that says all Lyme is treated in "4-6 weeks") and that the judge found them GUILTY. Lyme controversy: http://monamorphosis.blogspot.com/p/great-lyme-controversy.html. He and the IDSA are the reason I can't get my IV meds covered...
Guess how many people I know that have been misdiagnosed at UCSF who have late-stage Lyme? Over 200. One who was told she had ALS and was going to die. She did Lyme treatment for 2 years including 12 months of IV and is now 99% better and swims 6 days a week.
Guess how many late-stage Lyme patients go to UCSF Infectious Disease Clinic? Zero.
I am very glad they did the story and HOPE Blue Shield will pay me back $100,000 but there is still major media resistance to exposing the mainstream medical culture's denial of this disease, appropriate treatment, and its insurance coverage! I know CBS KPIX was trying to be unbiased but I wasn't so happy when the newscaster called this (my) treatment 'VERY controversial.' I have more than a mouthful to say about that. I wouldn't be experimenting with a catheter in my body for a year unless I knew I was getting better! Nor would I be putting my family and I into tens of thousands of dollars of debt for a treatment I thought was controversial. Controversy, my ass!
Thanks for watching, for your support, but this fight ain't over til I'm in front of Congress testifying against the IDSA. Mark my words, it will happen. First, I have to finish my infusion.
Love,
Mona
Will keep you all posted on what happens. The Department of Managed Health Care (DMHC), profiled in the first news segment, and the CA Department of Insurance(CDI) were VERY responsive to me after CBS called them. Interesting how a little media attention gets you VIP treatment. The DMHC and CDI (both state agencies who oversee insurance denials and disputes) have been incredibly compassionate and helpful in investigating the case.
BUT, Blue Shield is still putting up its walls, and I hope the DMHC and CDI will press them for a fair resolution. DMHC closed my case and I called them to reopen it, when I found that Blue Shield wasn't really reimbursing me for the last 10 months. Blue Shield told me over the phone they used "formulas and allowed amounts" to explain to me why they still can only cover $17.00 on a $2,000 bill (that's for FOUR days of IV meds). Hmm... Though I thought this media piece would signal the last of this ongoing insurance dispute, I see the Universe wants to teach me a long lesson in patience. Patience is not one of my virtues. Perhaps it will be after this.
Update: January 10, 2011 - Although Blue Shield covered my IV meds for ONE of the last 10 months, they have decided to abruptly stop coverage of all IV meds and equipment as of December 24, 2010. I just found out they stopped coverage after receiving a $1500 bill for 1 week of supplies and meds. I was IRATE. Angry, pissed. Now I realize that YES, this is worth devoting my energy to, it's a lot of debt otherwise. But NO, I don't have to be angry and waste my emotional energy stressing out about this. Yes, I may incur oh...$30,000 alone in the next 5 months in additional medical treatment. Is my health worth that price even if it bankrupts me? YES.
After losing any idea what it feels like to be a normal healthy human being for almost 5 years now, I can say with confidence there is NO PRICE one can put on health. Be grateful...that you can just get up and go to work. That you can make it to the train or bus station. That you can get your own groceries and cook a meal, and go snowboarding, all in the same day! That you can walk 6 blocks in the park without worrying how you'll get back home because you know you cannot make it that far. That you can go to Cirque de Soleil or a movie without freaking out at the light and noise. That you can get errands done in one day instead of three because you don't have to sleep 14 hours a day. That you can shop til you drop because there is no time on how long you can be standing up. That you can sip the sweet taste of sugar and alcohol and gluten! Mmmm...That you can get on an airplane without assistance, or a wheelchair. That you can carry more than 3 lbs. on your left hand because you don't have a catheter in it. Oh, be grateful, because it is the most precious thing you have. Losing it, though, has probably been a gift to me. I know I will look back one day and realize this time was a blessing in disguise. I realize it even now on certain days...Ah I digress..
Not to get up on my high horse here, but I have done a pretty damn good job fighting this insurance appeal (and my two disability appeals) from every angle for THREE years now. I've tried letters, legal means, media outlets, and the paperwork is endless. I'm still fighting but I have no choice other than to keep taking the treatments that are getting me better. So, yes, it SUCKS that those fuckers at Blue Shield have put me through so much shit. But, my health is more important. THE most important thing. It will all work out. Somehow. We've made it through this far. And thanks to MANY of you who have donated to help me pay for my treatments. I am beyond humbled.
Sidenote to other Lyme Patients: I have decided to collect information from all Lyme patients as to amount of debt incurred by you and your family for all Lyme treatment (traditional, holistic, HBOT, everything) - a rough amount - and insurance company name. I have received numerous responses already but am hoping to collect a large sample of this data, and post it to my blog to illustrate to people how extremely endemic this disease is, and how many lives and how much livelihood and money it takes from people. Also, thinking of doing an op-ed on it when I have some energy. Perhaps then people will understand it is an epidemic that is looming dangerously, and needs to be addressed.
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