First Things First. . . .

Thank you Greg Sargent, who featured me on The Washington Post's Plum Line in a piece entitled, "What Would Conservatives do for Hillary StPierre?" 

You can see the post here:

http://voices.washingtonpost.com/plumline/2011/02/what_would_conservatives_do_fo.html

or read below:

What would conservatives do for Hillary St. Pierre?

By Greg Sargent

Ezra Klein points us to the difficult dilemma of one Hillary St. Pierre, who has Hodgkin's lymphoma but says she might be forced to drop her treatment if the Affordable Care Act is repealed:

The legislation put an end to lifetime limits on coverage for the first time, erasing the financial burdens, including personal bankruptcy, that had affected many ailing Americans.

For example, Hillary St. Pierre, a 28-year-old former registered nurse who has Hodgkin's lymphoma, had expected to reach her insurance plan's $2 million limit this year. Under the new law, the cap was eliminated when the policy she gets through her husband's employer was renewed this year.

Ms. St. Pierre, who has already come close once before to losing her coverage because she had reached the plan's maximum, says she does not know what she will do if the cap is reinstated. "I will be forced to stop treatment or to alter my treatment," Ms. St. Pierre, who lives in Charlestown, N.H., with her husband and son, said in an e-mail. "I will find a way to continue and survive, but who is going to pay?"

Ezra charges that Republicans and conservatives are irresponsibly advocating for repeal without having their own idea in place to deal with the plight of those who are in Ms. St. Pierre's situation.

That's an awfully harsh verdict, so I'd like to give conservatives a chance to respond. So, a question for any Republican and conservative readers or bloggers who feel like answering: If the health law were repealed, what would you propose doing for Hillary St. Pierre instead?

I couldn't have stated it better myself.

Thank you everybody who has written about my ordeal (you'd be surprised how difficult it is to track them down and thank them personally), and especially all who have commented whether it's to help, share their story, or disagree.

Broom Hockey Weekend!

 Thank you, everybody, who has supported me this week. It has really been one for the books. I'm happy my story is out and being told. Hopefully, no other person will ever have to suffer the physically and financially debilitating aspects of disease the way I have.

But even the sickest of the sick or the most tireless advocate needs a break, and what better way than Charlestown's annual Winter Carnival and a broom hockey tournament?

No, I wont even be stepping on the ice. Alexis all ready reminded me of the year I was told to stay put on the snow banks, didn't, and quickly found myself on my back staring at the sky.

I'll be proudly watching my team, made of a combination of local friends and friends from college, join the "A" division after 8 years.

We've turned it into our yearly winter family get together. My house is full of my favorite loved ones from my college days. My parents and sister with her family have even made it this year.

I'm so excited. This is a great end to a wonderful week. Again, thank you everybody.
I'll be back at treatment, and hopefully posting, again Monday.

The Right to Choose Coverage or Not

Shockwaves went through the healthcare world when a FL judge was the first to declare the new federal health care law, The Affordable Care Act, unconstitutional due to its "must-buy" provision. With many other states proposing and voting on similar bills to join a federal lawsuit questioning the constitutionality of the law or repealing the state's previous ability to enforce portion of the bill, it is anticipated that many other states will join in the suit, bringing the constitutionality of the law all the way to the Supreme Court maintaining, what one FL reporter stated, that, "we do not endorse solutions that sacrifice the rights of individuals," such as the right to choose whether to purchase health care coverage or not.

However, FL does mandate insurance, According to FL Highway safety and Motor Vehicles Dept. Website http://www.flhsmv.gov/ddl/frfaqgen.html the very first question explains their stance on auto-insurance:



I am registering a vehicle for the first time in Florida. Is automobile insurance mandatory?
Yes. If you own a vehicle with at least four wheels and are registering it, you must have Florida insurance.


The entire page goes on to explain what type of insurance is necessary and its regulations.

Every single one of America's 50 states has laws that require, or at the very least, strongly recommend, that the owners and operators of automobiles have insurance. 


So why has a FL Judge and its governor denounced mandatory healthcare as unconstitutional when the precedent has been set by requiring auto insurance? And why aren't Americans complaining about this mandate? 


Failing to be properly insured health wise, as with an automobile, affects us all through driving up healthcare costs. 


And what about the choices we have in our current health care system?


I can not choose to change my health care coverage to any other insurance than what my husband's company offers him.


I can't choose to leave my husband, because he is the policy holder of my health insurance. Doing so would allow a lapse in insurance, rendering me "uninsurable" due to my "pre-existing condition."


I can't choose the Doctor I want to see. The insurance company provides a list of in-network providers that they will cover. Choosing to go out-of-network would result in even higher medical bills. 


I can't choose the hospital or location where I would like to undergo procedures. 


When diagnosed with cancer, one loved one of mine was forced to undergo an extensive surgery, including a bowel resection, removal of the gallbladder and appendix, as well as retroperitoneal chemotherapy hours away from home.


Upon discharge, she had the options of spending money to stay locally at a hotel or returning home, hours away from her dictated care providers.


If all these choices are influenced by cost, a they really choices? Do you feel that you have the freedom to choose the best medical plan, the best doctor, or the best care where ever you choose to receive it, whether having a child or having a biopsy?


I know I don't.

The War for Quality Health Care

There is a war raging on our home-front, from the tip of Alaska to the Southernmost aspect of Hawaii. It is a conflict that is affecting all Americans, whether we have chosen to join, chosen to ignore, or been thrown in by unfortunate circumstance.  It is the fight over the state of our Nation's current healthcare system, the most expensive in the world, costing 2 trillion yearly (Catlin, A, C. Cowan, S. Heffler, et al, “National Health Spending in 2005.” Health Affairs 26:1 (2006)),  and among the least qualified in the Industrialized world, producing a life expectancy ranking 42nd, behind both Chile and Cuba (Wikipedia). The battle in the war for quality health care has come to the my home-front and is being waged in NH today. 


HB 440 would Repeal health care for high-risk pool patients and the ability for young adults up to 26 yrs old to remain on their parent's insurance.  It would also require NH to join a lawsuit against the Affordable Care Act.


 This is similar to HB 89, which will be heard next week, which seeks revoke NH's insurance commissioner's temporary authority to implement and enforce the health insurance reforms and protections contained in the ACA. This authority has  allowed NH to create a new, federally qualified and fully federally-funded high-risk pool for adults with pre-existing conditions, whom insurance companies refuse to cover. NH's high-risk pool was the first-in-the-nation to be established.


To summarize, the bill is trying to repeal a FREE to NH's resident's high risk pool and asks us to join in an expensive federal lawsuit. 

NH's Attorney General testified at a previous hearing on HB 89, which sought to have the Attorney General join other states in a lawsuit against The ACA, that HB 89 itself was unconstitutional because it infringed on the principle of "Separation of Powers."


The Following is my testimony on HB 440:

House State-Federal Relations and Veterans Affairs Committee

February 3, 2011

Hi, my name is Hillary St.Pierre. I’m writing to testify against the passage of HB 440. The new health law, especially the High risk pool which protects patients with life-threatening diseases who would not be able to secure insurance, needs to remain in place in NH.

I am a lifelong NH resident and registered nurse. I am also Hodgkin's lymphoma patient, diagnosed four years ago, at the age of twenty-three, while working full-time as a critical care/emergency department nurse, and parenting my three year old son.

In the past four years, I have had to wage a battle for my life, undergoing multiple chemotherapy rounds of chemotherapy, radiation, and two bone marrow transplants.

I have fought my cancer alongside another strenuous, uphill battle: a battle to sustain my livelihood due to astronomical healthcare costs.

I thought upon diagnosis that I would never have to battle for health insurance coverage since I was an RN and my husband is an aerospace engineer with an established career and what we still consider good coverage.

However, if it were not for the new health law and the protection of a high-risk pool, I may not be able to continue my current chemotherapy.  I will be forced to decide between my current, effective treatment and a treatment of lesser quality, a choice no American free American with the constitutional “Right to life” should ever have to make.

My insurance company currently reimburses, on average $600,000 yearly, for my health care. At this rate, I will hit the previous $2 million insurance maximum within the year.

Fortunately, due to the new health law,  my insurance company has removed the $2 million limit, which was put in place years ago when medical costs were substantially lower. I no longer have to live in fear my fight will be ended by an insurance company’s desire for higher profits.

During my battle, I have lost the ability to feel my hands and feet. I have lost 2/3 of my lung capacity. I’ve lost the ability to practice a career I love. I’ve lost the possibility of ever owning a home, but I have survived.

Without the new health law and the safety net of the high-risk pool, trying to pay out of pocket for my healthcare expenses would not solely bankrupt me and ruin my credit, it would kill me by forcing me to choose between medications and food and shelter.

I will be forced to change my treatment plan and possibly cost shifting to Medicaid or Medicare, and I will be forced to choose between prescriptions, just one of which costs over $700 monthly. 

Repealing the new health law is not a cost effective option for NH or its citizens.

My options will be limited by monetary constraints forcing me to choose between a quality life and possible death.  I will  not have the option for “the pursuit of happiness.”

The Statue of Liberty, the former entrance to our country and welcome to the world, has inscribed, “Give me your tired, your poor, yearning to breathe free.” The new health care law has allowed NH patients to again breath free without fear of their health care decisions being constrained by cost. The passage of 440 would force NH to enter an expensive battle when our resources could be spent remedying factors that contribute to rising health care costs and freeing NH’s tired and poor.

Please think about what you would do if you were in my situation. What would you do if it was your life and livelihood on the line? Think about the constitutionality of forcing a NH citizen to choose between effective and subpar care or their home and medications. Please,  think about how you would like to be treated and vote against HB 440. 

Thank  you.

Livestrong has declared February 4 "World Cancer Day."

I hope, tomorrow, we can all put aside our differences of opinion and reflect on this equal opportunity killer.
Cancer has no regard for status, race, or gender.  It will attack 1 in 2 men and 1 in 3 women.
Please, protect yourselves and your loved ones and let's work together to end this horrible disease. 

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?

My First Huffington Post!

Who is that sassy writer with an official "Huffington" Post?

Yes, that'd be me, your favorite baldie and professional cancer patient!!

You can now add "writer" to that label. Check me out. Tell everybody. I have my own picture and biography:
http://www.huffingtonpost.com/hillary-st-pierre/i-considered-a-medicaid-d_b_816668.html

Now, I'm a little confused. I'm not clear whether I really get to keep posting or if this is a onetime deal. It's the too-good-to-be-true feeling.

Really, if I didn't have bad luck I wouldn't have any, but I'm hoping to add this to my writing repertoire, an adjuvant to Baldie's Blog, where I'll write in a more professional context, adding transparency to healthcare and building a community.

Luckily, I've been taken under the wing of a great editor. Thank you Linda, I never would have gotten anything without her.

And this could start a writing extravaganza: An article featuring ME in The New York Times is slated for print TOMORROW.

I love writing "me" and "New York Times" in the same sentence, even if it is depicting my plight with meeting my 2 million insurance maximum.

As with breaking news there is always a possibility that it will not run tomorrow, but everybody should be on the look out.

With all the excitement, I can hardly contain myself. 

Cancer My Day

On some of my worst days I wake up and know I'll be going straight back to bed as soon as x is off to school, if I can get him off to school. 

Often these mornings lead to desperate phone calls to my dad or brother to get x to school. 

Either way, I end up collapsed in bed or on the couch. Do not pass go. Do not collect $200. 

Whatever plans for the day, canceled, or cancered. 

No shower. No breakfast. 

Silly me, no food or drink.

 I'm in a chemo-induced fatigue quesi-coma. I feel like a lump, a big growth coming out of the couch. I feel dirty. My stomach aches. My back flares. Even my skin and teeth hurt, if you can imagine that.

I hope you can't.

When I wake it takes an hour of thinking about moving to get up, even if it's to head to the bathroom.  

And you thought your motivation for exercise was bad.

I always set my alarm, hoping its a transient attack of fatigue. I pretend I'll wake up before 2:30PM feeling well enough to get X.

I rarely do.

Again I scramble, I call my mother-in-law, who hopefully is available to pick X up. 

If not, I do it. Luckily, X is old enough to fend for himself, but leaving the house feeling like I do is an act equivalent to climbing a mountain to the everyday healthy person.

I'm beginning to feel like Atlas, the mythological character that was punished by the gods to roll the weight of the world up a mountain only to have it roll back again when he reaches the top.

 The weight of the world is on my shoulders, and just as I feel some relief, like reaching my destination or becoming healthy, the ball drops. 

My body reminds me who, or what, is in control, and I am either laid up in bed or scrambling to the hospital.

I know why this happened.

My medications tricked me again.

 I was feeling, dare I say, normal. 

Everything has been going so well. I had an amazing chemo holiday. 

Chemo has been going well. I'm generally back on my feet by the end of the week.

 I've been going on road trips, to basketball games, chuck-e-cheese and the mall. 

But all this comes at a cost.

I'd attributed my increasing health to the treatment holiday, a more healthy diet, and exercise. 

I didn't completely dismiss the role of my everyday medications.

I started to get irritated with my prednisone. My face is swelling. My cheeks are rubbing against my chins. I was starting to eat like a maniac.

My irritability is increasing to the point that if you piss me off I'm ready to rip off your head and spit down your neck.

So I started to taper. I dropped my dose from 15mg to 12mg.

Bad choice.  It was too big a jump for a woman with Addison's.

I should have started at 13mg and varied to 12 the next day, which I normally do.

But for some reason I didn't and I coupled it with a sleep over and run to Boston. I exhausted myself, which I can never allow myself to do.

Today, I'm back feeling like myself, thankfully, and will again be able to update everybody on their burning questions.

I haven't forgotten about my GVHD eye question. Mystery person, you can always search the sidebar and old posts will come up about Dr. Dana at Mass. Eye and Ear and my previous attempts. I will tell you about the NY Times, Pink Pint Night, and The Huffington Post... soon.