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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Thursday, February 10, 2011

"Let Them Eat Cake"

"Let Them Eat Cake." 
-Marie-Therese, upon learning the peasants had no bread during a period of famine

I had to choose between tires and treatment this winter. Needless to say, my jeep, with 4-wheel drive, has been skidding around out of control all winter. Now I need new tires, replacement windshield wipers, and a new tail light. 

Amidst my illness these past several days, one that had me babbling incoherently with a temperature of 102.1, I never stopped keeping tabs on my fate being decided for me beyond my bedroom walls in the meeting rooms in government buildings all over the country.

It seems like everything so many have worked for to protect us sick is being torn apart piece by piece. Maybe these people have forgotten that there are actual patients and lives attached to these bills.

NH, my homestate, is seeking to repeal NH's high risk pool and the authority to implement federal health care reform. They're seeking to reinforce insurance maximums.

In response to to one cancer patient's testimony, a representative interrupted to state, "I'm sure if anyone is ever diagnosed with cancer, their communities will rally to support them in their time of need, hosting back sales and fundraisers."

Millenial America

Well, yes, I have been very fortunate to have a fabulous community that has supported me throughout my illness. However, I have never had a bake sale that collected $813,890, the amount hospitals submitted for my care during 2010. I've never had a party raise $580,262, the amount my insurance company actually paid during 2010.

How much would a cupcake cost at that bake sale?

And where would the rest of my health care costs, my co-pays, my travel expenses, food, housing, etc. come from. That amount has totaled upwards of $20,000 yearly since my diagnosis.

I've had my current insurance insurance 2.5 years. An educated, conservative, guess is that I have spent $1.4 million so far.

At this rate, I will run out of funds within a year. If this bill is repealed, I will meet my lifetime cap. I will be forced to stop treatment or to alter my treatment. I will find a way to continue and survive, but who is going to pay?

A bake sale? Not in this economy. 

I have done everything I can to stay afloat. I have budgeted. I have cut coupons. I've foregone treatments. I've rationed medications. I've forced myself to work. My husband works incessantly. 

This week, during my illness, I tried to alter my treatment schedule so I could sell my jewelry knowing that is my only source of income.

We've been helped through fundraisers, but we are still not comfortably able to have both health care and the American Dream. 

We have an American Nightmare, and we are not alone. Not everyone is as fortunate as us to have close family to babysit, cover medications, or take days off work to be a caretaker. Some Americans have nobody.

Just like the ill are forgoing treatment, waiting until their tooth aches turn into abscesses or their strep throat turns into rheumatic fever before running to the emergency room more sick and needing more expensive care, representatives are tearing down what we have to build on, waiting until the situation is catastrophic to make a plan and implement change.

 Just like a trip to the ER instead of a clinic or Primary Care Doctor, this fix is going to be far more expensive and less effective.


ozziegirl said...

I've just stumbled across your blog. I would be completely screwed were I American. I had lymphoma but because I'm from Australia, I didn't have to worry about not being able to afford treatment. I took it for granted that I would have access to every drug that I needed. I opted to access my private health care just as a goodwill thing, but had I chosen to go public, my care would have been exactly the same.
I really don't understand why Americans have a problem with universal healthcare. It just doesn't make sense to me. My state government also provided me in-home care for my pre-school aged children. The federal government also subsidises mental health care plans - ie. the government pays for $120 of my $150 psych visits. Up to 18 a year.
If I were in America, I'd have to join a church or cult now that I have a pre-existing condition.
I would hate it if we went down the American path.
I have private health cover, but that is more for elective surgery stuff. My cancer treatment was too serious to be treated in a private hospital, so I went to a tertiary training hospital.
Ambulance cover is private - costs up to $400 per call out, but the bill comes after they've taken you to the hospital.
I also didn't have to pay for the prophylactic drugs.
People here just don't get those crazy tea bagging hatter people.
Of course what we don't have in Australia is the latest in biomedical technology, but our government hopefully has plans to increase research/development in this field. We don't have access to clinical trials as you guys do.

Thank you for sharing your experience on this blog.

Ozzie girl said...

Having said this, the public system is stressed and the hospital sent me a letter thanking me for accessing my private health care when I was an inpatient. My insurance paid for the room. Costs about $600 per night. Drugs that are not on the approved pharmaceutical benefits scheme would cost someone $$$... So we just have to pray that a politician's wife has the same disease...this happened with a breast cancer drug in the mid 00s...the PM's wife got cancer, and hey presto! it was on the list!
We have one of the highest, if not the highest, cancer cure rates in the world, and I think it is because we have the social welfare support. It means we don't have to run around baking cup cakes.
I also have the luxury of recovering because I don't have to go back to work to keep my insurance. In fact that sounds communist to me.

Sending you my best wishes Hillary. Thank you for fighting a good fight, on behalf of my American friends and family.