Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

Get a playlist! Standalone player Get Ringtones

Monday, February 14, 2011

Dirty Little HealthCare Secret: What I've considered to survive financially while treating cancer

It's a dirty little secret that most people have heard about in private gossip or hushed whispers, but what exactly do people consider when faced with both a life threatening illness and bankruptcy?             

 It is healthcare urban legend: tales of couples divorcing to save their home or the housewife being forced to deal drugs to survive while battling breast cancer. Everybody seems to know, have heard of, or even may have considered themselves something possibly " fraudalent" or even "illegal" to survive when faced with the choice between their health and their livlihood.                                                                                      

Even today with the issue of subprime mortgages, 50 percent of all personal bankruptcies include medical related debt, but very few, if anybody, is willing to admit to what they've considered in desperation to save their livelihood.                             

Maybe it's the guilt from being a good person considering "bad" things, Maybe it's the fear of even worse repurcussions, such as social ostracization or arrest,  or maybe even, it's a combination of these.              The latter  is why I've stayed silent all these years.  I've been battling lymphoma for five years now, right alongside the nation's battle for healthcare reform.                          

 In this time, I've contemplated  ways to make money as often as I've thought about  treatments for survival.                                            

 It's a 50/50 toss up which one, my life threatening disease or my livlihood threatening finances, more problematic.  No person should have to fear for their livlihood while their battling for their lives, but I do.                                                           

And  Just when I think my situation can't get worse, it does. My cancer reoccurs, The insurance co. denies claims. I start getting dangerously close to the two million treatment maximum. Still too sick to work, four years after beginning to receive their services, my disability insurance co., Reliance Standard, contracted to protect me during this time, sues for overpayment stating they failed to deduct social security from my award. They want their $35,000 back, NOW, and according to a lawyer specialized in health care law, my only option is a payment plan. 

All ready feeling helpless to control my disease, the helplessness now extends to every aspect of my life. It's no longer, how will I fight cancer? It's how will I afford to eat? We all know, people do crazy things in desperation.                        

As an ER nurse, people would give fake social security #'s to the registrars, which wouldn't be caught until after treatment. 

They would steal identities for healthcare.  

Not being on the inside," you may wonder why the fraud, they'll get they'll still get treated, right?

As an ER nurse, I have also seen a patirnt return repeatedly, not having primary care, for ear infections, sinus infections, ear/eye drainage and severe migraine headaches demanding something was wrong.

 In a perfect world, with insurance, this man would have received a CT for his complaints. Instead he was given antibiotics or pain control.

 He collapsed crossing the street to the hospital one day, his benign tumor having grown so large his brain herniated. He later died. 

If that's not a case of socio-economic discrimination that cost a life, I don't know what is.

Being a reasonable woman (and having insurance), I've never considered identity theft to fund treatment, but I have considered deeds, things I cringe at and bring tears to my eyes that I've had to even think about to continue living.   

What are these "things?" What are my dirty little secret considerations.     

As the bills mount, you try everything to stay afloat. You cut your budget. You clip coupons. Your spouse works overtime. They get a second job. Your family begins to separate. When your spouse should be beside you, holding your hand in chemo, they're working to pay for treatment. 

Being sick, I thought of avon or mary kay for side pay but was too to schedule any parties.

 Not wanting to drag a loved one down financially, I considered divorce to ruin only one credit, but before I made any move I asked for help from my medical team.       

At diagnosis I was given a sheet to fill out for $500 in aid from The Leukemia and Lymphoma society, but that was the last of an financial help from the med staff. I should have asked for a "social worker,""financial advocate," or made a good friend in the billing department.                                             

The first time I brought up my money woes my NP stated, "Don't worry, you can just write that off.". . 

Hmmm, yeah, in 8 months, I need care now.  

That's when I started getting creative.

 Of course the easiest routes cross your mind first. I considered selling my medication to stay afloat, but found that pill too hard to swallow. It was too morally incomprehensible and Who wants to invite that element into their lives? 

I searched the internet for help. I've always been able to find funds. We can call them "cancer scholarships." I received one from The Cameron Seimers Life Hope Foundation for $5000. I also received co-pay assistance from the LLF for a year before it went bankrupt to the tune of $2600. 

It was clear even with the help I'd found, I was using a spoon to bail out a sinking ship. 

Here I thought about getting creative with assets, placing things in my parents or childs name.  I needed to own nothing, or little.    

I thought about relocating to Mass. Or at least establishing residency with my sister where there are more insurance options.

 I also considered "partnering" with a pharmaceutical or research company, such as Genzyme, who would help with costs in return for my health information.

 Nothing was enough. 

When times got desperate, I even considered using my twins identity (with her permission) so I didn't have to pay out of pocket for medications. 

My communities' rallied around me, throwing me fundraisers from Claremont/Charlestown to NY and Boston. We had yard sales, bake sales, and bracelet sales. 

My Aunt B, a financial advocate, came to my rescue battling the insurance company for coverage they contractually owed instead of cost shifting to me. She spends, on average 3-4 hours weekly, advocating on my behalf so I don't pay above and beyond my $6000 deductible, my 80/20 co-insurance, co-pays, etc.

Her assistance is priceless, but I still tore through the $35,000 raised moving to Boston for my transplant, living in a hotel, eating my special diet, traveling back and forth, paying medication and visit co-pays. My monthly med co-pays reached more than $250 during this time. I saw my specialist at least twice weekly at $25 each for a year. 

During this time, I spent little on luxury for myself. Eating out was forbidden. Leaving my safe isolation was forbidden. Feeling "ok" just months after transplant I tried to work for Five Eagles Design, Vic's Eco-Friendly building business, but I didn't have the energy or health to be consistent.

When my cancer returned, I desperately wanted to try alternatives. I searched the world for the most effective treatments for my disease, but after discussing the options with my family, we decided to save ourselves financially and remain close to home.  

 Even healthy food was too expensive and hard to come by. 

Finally, after almost 5 years of struggling, I've thrown up my hands. I'm lucky for the social security and medicare I receive. These have been the most consistent programs. They've kept me alive. I know now what I can control and can not. I only hope no one else has to struggle with wondering what to do if it was their life, their parent's, or worse their child's life being threatened.

No comments: