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, October 22, 2008


The economic downturn is hurting more than our wallets, 1 in 3 Americans say they can’t afford their health care bills. People are neglecting their medications. They are not seeking treatment for simple diagnosis, such as strep throat, because they don’t have the $300 for the appointment and the $50 for the prescriptions. People do not realize failing to treat strep can lead to rheumatic fever, heart problems, and kidney failure.
They shouldn’t have to understand this. They should have affordable health care. It’s not right for people to treat themselves. This crisis is going to reach a tipping point and become a health care crisis.
Thirty-six percent of Americans are delaying care. It’s young adults that are getting hit the hardest, 67% actually have skipped appointments or delayed recommended treatments due to cost.
I’m in the gray away, where I will take the care, and hope to survive both my health care and the system. I don’t open my bills right now. I’ve delegated the gory mess with the insurance company to a great Aunt. I’ll survive, in just a little bit of debt, even with the love and donations of my community.
I have a prime example of how the health care system is failing our twenty-somethings. A friend of mine has hepatitis C, and no she did not get it through sex or needles. She was born in a refugee camp, she inherited the disease from her mom.
She is twenty six and works as a consultant under contract. She owns her own business, but she can’t get health insurance.
She knows she needs it. She has been fatigued, jaundiced. She has a general feeling of malaise and has recently been throwing up. She needs to be treated and quickly.
Unfortunately, she has a “pre-existing condition.” HIPPA, which was created in 1996 to prevent insurances from blacklisting you are a customer, was not in effect when she was diagnosed.
Whoever thought of this concept of “pre-existing conditions” should be dragged out into the road and shot. I live in fear of losing my health insurance.
She has tried to get health insurance, but all those forms and plans are like reading Japanese. She just doesn’t have the time, the energy, or the money to research and pick a plan.
She is going to get very sick, very quickly, and there is no helping her unless she can come up with tens of thousands of dollars for treatment.
I hate seeing this. She’s a young successful business woman. Her life may be getting cut incredibly short.
I also have another friend who was “diagnosed” with multiple schlerosis at thirteen. She’s a lucky girl, her father and uncle are both doctors.
That “diagnosis” disappeared pretty quickly, since MS is only treated symptomatically in the US, and there are very promising German therapies if you can pay out of pocket for them.
You also have to know who to get in touch with. I’m not so sure how hard it is to get your hands on this type of information. I’m lucky I’m an insider.
Just a little warning, but a social catastrophe is coming. I don’t see the problem just in the rising cost of health care. I see the trickle down effect of patients delaying, or refusing care. They will ignore symptoms until they can no longer be ignored and present to the doctor’s with end stage diseases. This will inevitably break the hospitals, since insurances won’t provide or won’t budge on their reimbursements despite rising costs of providing care. It will force more hospitals to right off more bad debts. Hospitals all ready write off 34 billion annually due to failure to reimbursement.
I want the middle man cut out. I want supervision and accountability for the insurance industry. It can’t be run by wall street or fat cats anymore. We’ve all seen what happens when they’re put in charge, and then they take the money from the sick and struggling and spent a $150,000 on a weekend get away. Not okay.

4 comments:

Anonymous said...

So many of these comments you've made about medical insurance and people's needs makes me want to somehow send them to the Presidential candidates and say "tell me what you are going to do about this." These are the stories they need to hear and DO Something ABOUT!!!

Heidi W.

Frank said...

And if sending the stories to the political candidates doesn't work ... & let's be honest, they've heard them & have side stepped the issues ... then I say:

VOTE HILLARY!!

Lina said...

Picking a plan is easy if you have a job with a company. But what happens when you're in the gray between? Who looks after them? Health insurance has become a business. And like all business, it's a cold transaction.

Plus, they do need to make it easier to understand. What the hell is deductible? Why am I supposed to still be paying copayments if I'm still paying "deductibles"? And how come when you end a plan, you don't get your money back that you put in and didn't' use???

Erica said...

Hi Hillary. This is Erica. We studied nursing together, only I went running home after a semester. I'm the girl with the crazy congenital heart problems. I've been reading your blogs for a while now and have been thinking about writing you, but I was afraid you wouldn't remember me. But then I read this post and spoke to Roxy and she encouraged me to write you.

First, I wanna say I'm so glad you're finally home and that I think about you often and wish you the best. I think it's great what you're doing with this blog and when I read your posts I'm reminded just how amazing and strong you are. And I wanted to take some time to write you and let you know you're not alone.

I can't pretend to know what it's like to be living with cancer (I love how you phrase it like that), but I do know what it's like to live with some pretty serious problems of my own. And because of that I've been able to relate to many of your posts. Especially this one. I think it's insane how there are so many people dealing with such serious medical problems and then on top of that have to worry about whether the medication they take to keep them alive will be covered by their insurance (which they probably pay huge amounts for). It's happening to me too. I worked for a year as an RN and became disabled in 2006 after having an episode of junctional tachycardia. I was denied benefits for long term disability through my job's insurance so I applied for SSI/SSD for which I was finally approved. I receive Medicaid, but I still pay over $500 to my former employer for COBRA because Medicaid only covers doctors in the part of PA that I live in and my cardiologists and endocrinologist are all in New York. And after almost 26 years of seeing the same doctors and going to the same hospital, I refuse to switch to new doctors. And honestly, I live in such a rural area, I wouldn't see a doctor here anyway. So, I suck it up and fork over half a grand every month. Add to that copayments and my other bills, and it leaves me broke! Sitting here, thinking about it, I realize money plays a pretty big part of this issue but it's not the only thing. It's the aggravation we go through and the worry. I remember even as a kid worrying when my dad's job would change insurance providers if I would be covered because I have a "pre existing condition". (I swear we need to get rid of that phrase) An adult that has enough things to worry about due to their health should not have to worry about pre existing conditions and deductibles and copays, let alone a child with medical problems. Which is why I agree with you and in some aspects I know what you're going through. I've been there. I've been dealing with it since I was born. So, I just wanted to write you to let you know you're not alone and to help others who may not be dealing with these same issues see what it's like and to try to understand what we go through on a daily basis. The more we come forward with our experiences, the more people will fight for a change.

I hope you're doing well and enjoying your new immune system! I'd love to hear from you. I don't know if you're on myspace, but I included the link to my profile. Take care.