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."

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Wednesday, February 2, 2011

Words can't describe the paralyzing shock of hearing those three  words, "You have cancer."

 I remember standing, unmoving, speechless, gripping the phone in my hand, a lump rising in my throat, staring into space even after the dictation had turned into a dial tone.

I didn't know what to do. What do you do when you realize your life is threatened?

My mind raced with a hundred different best case to worst case scenarios: "What would I do?" "What treatment would I have?" "How would I tell my family?" "How will they survive?" and of course,"Am I going to die?"

You would think that no sentence could be worse, that no other news could make me fear for my life the way a cancer diagnosis did, but I have felt more helpless, more hopeless and more fearful for my life when I read the words, "Your care has been denied."

It was surprising to me how quickly my insurance company sent a notice denying pieces of my care.  My first PET scan was rejected because "Hodgkin's Lymphoma" is not an accepted reason for a PET scan.

According to Blue Cross Blue Shield, cancer is not an acceptable reason to have a diagnostic test to determine the stage of cancer. 

"Nodular Sclerosing" is acceptable. Failure to speak in the language dictated and accepted  by my health insurance company is a $3500 mistake. 

As I underwent treatment, the denials poured in, day after day, and soon I couldn't call to defend the treatment denials. 

The insurance company was victorious.

 With me too ill to advocate for a major corporation to uphold their contractual duties for a service I had paid for and demand reimbursement, costs were deferred to me.  

We quickly racked up $25,000 in credit card debt, unknowingly paying bills that the insurance company rightfully should have paid, but not having the strength or path for recourse.
There were then, and are currently, no avenues to file a complaint against a health insurance company. There is no oversight agency they report to. You can't threaten them with a lawsuit or the better business bureau. 

Now, not only was I in fear for my life due to the cancer, but I was in fear of losing my livelihood: my home, my treatment, treatment options, etc.

I never imagined in a country where we proudly have the "Right to life, liberty and the pursuit of happiness" that my life and livelihood could be threatened openly and legally without any option for complaint or recourse.

 "You have cancer." is a horrible sentence to hear, but it is a diagnosis beyond humanities' control. No person can ruin a person's life, take their home, and divide their family by giving another cancer. 

The sentence "Your care has been denied" can be cause to divide your family, lose your home, your car, and your life.


It takes away hope, something no diagnosis can do. It's at that moment, reading those words, that you know you will die without treatment. Your hands are tied in a way that never occured to you. Your ability to choose  is removed and dictated by what's affordable.

Worse, This is entirely preventable and within our control to stop.

I can't think of anything more unconstitutional than denying care, or receiving subpar care, based on the inability to pay. It is discrimination based on income and health status.

However, a FL Federal Judge's decision has deemed the individual responsibility provision, or provision that all citizens purchase insurance, in the new health law unconstitutional, and with this decision, many states, including NH, are considering repealing the new health care law as a whole.

"The ACA has been repealed," would join the ranks of worst possible sentences for patients to hear. 

It would tie the hands of the previously uninsurable 50% of American's with pre-existing conditions who were given the option of high-risk insurance. It would disallow children up to the age of 26 years old from staying on their parents insurance as their launching their lives. It would limit 20,000 people yearly who reached their insurance maximum from receiving the best quality care. 

It is time to take control of what we can. Many can not prevent the diseases they suffer from, and we will all eventually face illness, but will we face it with obstacles and fear of losing or being denied care or will we face it with a safety net of comfort?

4 comments:

stonepost said...

Hillary, to continue this battle you need to research the "religous" reasons this great country is hesitant to have health coverage for everyone. There are 46 MILLION Americans without health insurance and these numbers are growing. National Health coverage is CHEAPER, BETER AND MORE FAIR, yet we still resist it. There IS a reason for this.

Anonymous said...

thank you for voicing this. i can't imagine how many people are in the same or similar situations. thank you for speaking up for yourself and them.

Anonymous said...

Hillary, if you have not already done so, look South to Massachusetts. Start with: http://www.massresources.org/

Become familiar with CommonwealthChoice and CommonwealthCare. Go to: https://www.mahealthconnector.org/portal/site/connector/

By moving to MA you may qualify for insurance without precondition exclusions.

CommomWealthChoice is where you pay the premium yourself - it is not subsidized. But it has less restrictions and red-tape to apply.

You need to establish residency:
1. Sign a one-year Lease under your name - for a bonafide MA address - condo, apt. etc. Move there.
2. Get your MA Driver's License. If you own a car, register and insure it in MA.
3. Immediately Register to vote, and vote - at your new address.
4. Plan to file and pay MA income tax 5.6%
5. Get Library card, Resident fishing license, etc.

Do 1-3 before you apply for insurance.

You can look at policies, costs, and benefits before you do anything. I liked BCBS HMO Blue - $500 deductible, $2,000 individual annual cap.

To be safe, get legal advice before doing anything.

One downside - PCP appointments can be tough to get - they are all overloaded because 'everyone has insurance'. I have not had that problem with referral specialists.

Good Luck!

P.S - legal advice is important, particularly if you go for subsidized CommonWealthCare. I believe the law requires a 6-mo residency, and you can be prosecuted for insurance fraud if you 'move to MA solely to obtain health insurance'. Supposedly, these have never been enforced - but if the insurer gets a $1M bill, they sure might try to.

Loraine Ritchey said...

Hillary as you know my son was also diagnosed with HL only all insurance is NOT created equal as I have found out- we had none of the concerns faced by others with this diagnosis..........

http://thatwoman.wordpress.com/2010/10/28/medical-insurance-not-all-equal/

and I feel this is so obscene that not only do you have to worry about the obscenity of cancer but also the obscenity of insurance - keep on fighting Hilary the both obscenities in your life you are helping more people that you can imagine Loraine