Testimony of Hillary StPierre on House Bill 89

House State-Federal Relations and Veterans Affairs Committee

January 13, 2011

Hi, my name is Hillary St.Pierre. I’m here to testify against the passage of HB 89. The new health law needs to remain in place in NH.

Please excuse any difficulties I may have, I had a surgical procedure and received chemotherapy on Monday to treat my Hodgkin’s lymphoma.

I was diagnosed with lymphoma 4.5 years ago when I was a newlywed with a young child beginning my career as a registered nurse.

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.

I was better prepared for cancer than any other 23 year old I have ever met, but if it were not for the new health law eliminating lifetime limits on insurance coverage and regulating annual limits, I may not have received chemotherapy on Monday. I would not have been able to undergo a necessary surgical procedure, because I am threatened with exceeded my lifetime limit.

I have undergone countless rounds of chemotherapy and radiation and two bone marrow transplants.   The treatment of my cancer as a chronic disease, using routine low dose chemotherapy agents,  is tough on my body but it is what will allow me to survive as long as possible.

It has allowed me to see my child grow from 2 years to seven. It has also allowed me to share my story and counsel countless others who have been diagnosed with cancer and to advocate for a stronger, safer health system.

I am thankful for the new health law, because I no longer have to live in fear my fight will be ended because of an insurance company’s bottom line.

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, 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.

Even if I found a way to continue chemo, such as through cost shifting to Medicaid or Medicare, just one of my prescriptions costs over $700 monthly, and I take 20 medications daily.

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

After a recent severe attack of graft vs. host of the eye, where my left eye swelled shut from microscopic particles scratching and inflaming my tissue, threatening my sight, I was offered the  cure through an off-label trial at the cost of $150 every three weeks.

We've reached the point where the hypothetical health question, "If the cure for cancer existed would anybody be able to afford it?" can be answered.

That answer is no.

Please look around the room. Look to your right and left. One in two males and 1 in 3 females will be diagnosed with cancer in their lifetime. No one knows who will be affected next, and no one can predict how their treatment will be covered.

If a young RN, who graduated valedictorian of her class, and her aerospace engineer husband cannot afford to get sick, no one can. This could easily be any one of you or your parent or your child in my position, please think about how you would like them protected and vote against HB 89. 

I am so embarassed right now.

 I can't believe myself. I should curl up under a rock and die of humiliation. 

What happened yesterday is the adult equivalent of standing solo on stage at your high school's talent show and proceeding to throw up or pass out or sing off key with your underwear tucked into your skirt. 

I went to testify at the hearing for house bill 89. I'd written my testimony. I put my heart in it. I put my greatest fears behind it. I cried while I wrote it hoping to touch a the heart strings of someone present who hadn't taken the politics from the paper to the people yet. 

I got on one of my power outfits. I wore my knee high suede boots that are made for walkin'. I donned my black blazer and take-me-seriously tortoise shell glasses. 

Yes, I was prepared to show that room who was boss, but instead, it showed me. 

I walked up to the testimony table, statement in hand, announcing who I was and that I was representing myself as a "professional patient" (see, I was even making jokes). 

I sat down and started to read, and I don't know what it was, I don't know if I'd exhausted myself, if the travel and excitement had been too much on me and my body after such an eventful day Monday (I do have a tendency to cry when I'm sick) or if I just couldn't take another second of hearing the sick referred to as profits, losses, and bylines to prove why the new health bill needs to remain. 

Whatever it was, Who knows, but I only read through the first paragraph to "but without the new health care law I may not have been able to receive treatment on Monday..." before I, the consummate professional, burst into sobbbing tears.

 I tried to overcome them. I tried to speak through them and pretend what was happening wasn't, hoping maybe no one would notice, but my voice came out in high pitched inaudiblle squeks. 

I'd prepared a damn good statement and now here I was before all the suits and stares blubbering like a whiny school girl.

I don't know how long this went on. It felt like seconds, but then again it felt like eternity, before someone appeared at my side with tissues. 

I tried to compose myself, but when i realized that wasn't going to happen I managed to look the chairman in the eye and state, "do not pass this bill." Before I snatched those kleenex and scrambled out of the room. 

 Luckily, with each statement I make on behalf of a bill that will negatively impact the sick comes a group of supporters who remind me that my story is necessary, and thankfully, many of those scrambled after me to remind me that many others out there are in my situation, but they're still crying hiding in their bathrooms, refusing to tell their closest friends how difficult their disease is to fight financially due to embarrassment.

I don't want to feel guilty or ashamed of my disease and how I can or can not cope with it anymore. I guess it was time to come out of hiding in a big way.

No one, especially not me, expected me to stand up and burst into tears, but hopefully those who see the new health care law as an expensive inconvenience will now have a face, an image in their mind, of who it has saved.

Experimental Herbal Gleevac

I did whip up ny experimental therapuetic herbal gleevac this past week end in preparation for chemo Mon. 

At first, I thought I'd really screwed up by using too much oil and diluting my weed. 

"What was I going to put all this oil in?" I muttered to myself, frustrated, "I might have well have just torn up my $20 instead of wasting I on whack cooking experiments."

 So as far as that goes adding 1/8 of weed to 40mls of olive oil is too much. It severely dilutes the effect, but It depends on what effect your looking for.

 I ended up pouring 4 tbsp. of the oil over my brown rice and adding more herbs. 

I didn't get buzzin, but I didn't throw up. I was able to munch through out the day on crackers and I drank continuously. 

That's what I was looking for. 

But of course, let's not forget that I took this in conjunction with my ativan and cesamet to keep me from throwing up. Who knows exactly which was most effective in doing what. All I know is that I've rested pretty peacefully.

I've also come up with some other ways to ingest that oil. I love olives and I can drain the olive oil from my tapenade (an olive spread)and replace it with the good stuff to spread on crackers. I can also pour it over noodles and make a scampi sauce. 

I'm starting to get creative. At least I'm comfortable and eating.

Desperation

It's a common mistake almost everybody makes, the assumption that everything is going perfectly or great or even relatively good when your friend, co-worker, or acquaintance keeps a smile on their face

It's not just a common mistake to keep what's out of sight out of mind. It's human nature. It's a protective mechanism. 

How difficult would life be constantly wandering around with the knowledge that each and everyone of us is suffering?

It would be overbearing, but through life, I've discovered some undeniable truths, and among these truths is the fact that everyone has had something happen in their lives for which they have become ashamed and won't express their shame over fear of repercussions such as judgement or punishment.

Often with me people assume I'm healthy because I've managed to care for my son by bringing him to and from school, playing with him in the afternoon, attending basketball games, etc. 

They see me doing these activities and base my entire life on the view of a few moments. These moments reflect the best of my life. When truth is I, and so many others, run and hide under the covers when we become sick, trying not to bother anybody, making ourselves as small as possible, not wanting to bother anybody with our issues.

What you see is strength shining through. I hide the most difficult aspects of my battle so others will not fear what may come, but it's important to know what will likely cross your mind.

I'm doing people a disservice if I'm leading you to believe that what I do, all the medications, surgeries, and therapies, is easy and I'm not crumbling inside.

I've never written about the thoughts I think when I'm at my lowest, my most desperate places in my life. I'd hoped this would be a space where I could share openly my trials and tribulations so people could understand how difficult a disease this is to everyone involved, and then integrate this understanding into their own lives. 

But Everyone has been touched by my disease and many recoil in horror at the thoughts that cross my mind when I feel my hands are tied. 

I didn't anticipate the emotional responses. It was never my intention to hurt anyone, But it's important all of you know to prepare yourselves, should you ever be in my position and realize you are not alone, you can find support, and your thoughts/feelings are normal for the situation.

 First, years ago, when I saw what little my insurance company would cover and how it could destroy both our financial lives, I tried to legally divorce my husband.

 Being unmarried, I would be destitute and have the option of medicaid. 

My husband would keep the assetts. 

Our life wouldn't change. 

We'd remove a legal label. No hospital or insurance company could ever take our home. We could survive off J's credit with assistance from my parents.

 In the USA, the sick can't afford to remain married. We fight for equality for all, the right to marry. I want the ability to stay maried. 

This is the first place the desperate mind goes in a health crisis, well, maybe it's the second.

The first most common thought may come as a shock. It didn't cross my mind. I was fighting a 90% curable disease, but that first clear  thought is usually suicide. 

After the rushing questions keep going through your head for so long: "how sick will I become?", "who will take care of me?", "what kind of burden will I be?", "how will i pay for this?", and "what will I lose?" a period of calm settles in when the realization that "yes, I can have control over this disease, this body." hits.

That choice wasn't for me.

We stayed married. 

For whatever reason, maybe J didn't like the lie, maybe he really wanted to stay together, or maybe he was scared once the divorce went through I'd go "ha-ha, I'm out of this now." and run away, either way we've stayed together through our suffering.

With this option gone, I looked to what I could do independently. 

I thought about dealing my meds but morally couldn't.

But then again, if I were to get caught, the state, government, and your tax money would fund my health care. I'd never have to call another insurance company or cry because someone is trying to send me to claims. No, those claims go straight to the pockets of other middle americans. I'd even have a full time nurse.

I tried to work odd jobs for my dad, writing, advertising, making art, in hopes to survive comfortably without the guilt of bankrupting my family, but my disease always made these endeavors impossible. 

I'm just too sick.

Substitute teaching? No, sick risk.

Selling online? I can't lift myself to the computer. 

With each relapse, with each new treatment requiring me to spend tens of thousands of dollars to go to Boston or New York or Cleveland, I find myself hiding in the bathroom, tears in my eyes, staring into the air, paralyzed by fear about what my next step will be, will I survive and can I afford it. 

More often than not, 2/3s of the time, the answer is no to the latter.

 I take the most convenient affordable treatment knowing that better is out there.

If the cure for cancer existed, and it may, in the form of customized vaccines, personalized chemotherapy, and hyperthermic radiation, I can't afford it. 

We've reached the point where the hypothetical health question we have all been asking: "If someone found the cure for cancer would anybody be able to afford it?" can be answered. That answer is no.

I'm interested to know how many others forgo lifesaving care due to cost.

I know I'm not the only one that could die due to this.

And just when you think you've hit your very lowest, you believe anything and everything awful that could happen to you through the medical billing process has. After you feel like you've been racked over the coals and barely missed losing everything, another crisis comes, a hook to the jaw from your blind side.

In my case it came in the form of a letter from my Long Term disability company, Reliance Standard, stating that I needed to supply them with my dependent's social security award letter. They requested this after 3.5 years of sending payments along with the threat that anything I've received for my dependent from social security will ned to be repaid or sent to claims.

WHAT?! 

They make a mistake and don't request a piece of paperwork from Day one and can sue for that money back 3.5 years later.

The company had been trying to purge me through out my illness by demanding evidence, paperwork, and signatures from physicians every couple weeks. Failure of one doctor to comply would threaten my funds, even if I saw that Doctor once for a consult. 

Their demands ere impossible to maintain while undergoing a bone marrow transplant, bu I was adamant they would not purge me. 

I had paid for the service. I was entitled to the service. Reliance Standard was paid to support me in the event I became sick when I did they made it increasingly difficult to meet their demands.

I ignored their request for access to my social security awards.

I consulted a lawyer who said this is common and perfectly legal, my only recourse would be to set up a payment plan.

A payment plan?? I can't afford my medications! I can't afford my dog's medications!! I can't afford anything and it's legal to sue me for back payments due to a paperwork oversight?

I hear this is legal, but moral? NO. Ethical. NO. Unconstitutional? I'd say yes, and fight tooth and nail to prove it.

Who knew the sick would not only be denied by the company's that they have paid to protect them, but also force to repay those that should be providing financial security during times of need.

That is what I've paid for.

Instead, I received a notice saying failure to reply within 15 days would be cause to close my case and send the assumed amount I owe to claims.

CLAIMS? They don't even have evidence I owe them. But this isn't court where we are innocent until proven guilty, this is a financial system where even the dying are forced to pay so a disability company can recoup their costs, even when the person is still legitimately ill.

 I worry for the others in the future who have to make the same decisions between marriage and divorcing, dealing or not dealing, medication or food then eventually choosing between healthcare and their homes. 

I've tried to advocate, begging anyone with the power to change the laws that have put me in this position, but at the climax of the healthcare debate, my lungs failed due to bronchiolitis obliterans and I retreated home to enjoy my family and fight my disease. 

I can't fight to survive cancer and fight to survive economically at the same time. 

I'll fail at one and I refuse to lose my life.

 I can only pray someone stronger and healthier will hear me and offer their assistance. 

If medicare has a donut hole then the middle class has a blackhole, where we work and contribute to society, We pay our bills, We pay our taxes and mortgages to support our country, we even vote, only to find that our country does not support us in return.

Help Emma's Eight

Imagine, as a first time parent, rocking your newborn daughter back to sleep after a midnight feeding and seeing something very wrong as you look her in the eye.

As a parent you always want what is best for your child.  The Krzak family would like to share their story of 4 year old Emma (photo attached to this email), who was diagnosed at 5 ½ weeks of age with Retinoblastoma, a rare cancer of the eye. They do so to build awareness and raise funding for this, and other rare cancers.

One way they are spreading the word is by creating a team, Emma’s Eight, and participating in Memorial Sloan-Kettering Cancer Center’s (MSKCC) Cycle for Survival.

Cycle for Survival will be in Chicago, Emma’s hometown, for the second time on February 5th. Founded in 2007, this indoor team cycling fundraiser builds awareness and raises funding for rare cancer research, and has raised over $5.5 million and funded thirteen research studies and clinical trials. Chicago is the hometown to event co-founder David Linn, and the University of Chicago and Northwestern University have both participated in trials funded by Cycle for Survival.

Cycle for Survival will also be in Long Island and New York City on February 12th;  New York City on February 13th.

Please contact me to speak with the Krzak family, or for more on Emma’s story, visit: http://mskcc.convio.net/site/TR/CycleforSurvival/AG_Cycle_Event?team_id=15141&pg=team&fr_id=1422   

For information on Cycle for Survival, visit www.cycleforsurvival.org

TO DONATE JUST LOOK TO THE RIGHT and click on the picture of beautiful Emma who, thanks to donations like these, survived. 

This would make my life complete. . .

I'm throwing out a big hint here, but I was blessed to be selected as on of Monadnock Women's phenomenal women, and now, they're looking for a woman of the year!

Please take some time to nominate me or any of the deserving women in your life. Email Faith at faith@monadnockwomen.com

Monadnock Shopper News & Monadnock Women are seeking nominations for phenomenal women

by Mowo Net Work on Thursday, March 25, 2010 at 5:16pm

Now is the time to start submitting your
Celebrating Women nominations for March's phenomenal woman! And, this
just in - March of 2011, one of the 12 Celebrated Women will be selected
as WOMAN OF THE YEAR at a very special dinner banquet for all
Celebrated Women between Feb. 2010 and Jan. 2011 Email me your
nomination at faith@monadnockwomen.com It's ok to nominate yourself too!

The selected woman receives:
Dinner @ Olive Garden and a bottle of their salad dressing
2 tickets to the Colonial Theater
Gift certificates to: BrewBaker's Keene, Center at Keene & The Colony Mill Marketplace
A photo shoot with KCBruce Photography & a free 8x10 portrait
Her hair done by Moda Suo Studio in Keene
A free membership to Monadnock Women
Her Monadnock Shopper News press release written by - By My Pen
All of these goodies come nicely packaged in a bin provided by Clarke Distributors, Keene

Take Action

Attention NH Advocates: I'm trying to coordinate a carpool from Claremont to testify Thursday the 13th to protect The Affordable Care Act, which protects me from exceeding a maximum insurance cost and having to stop treatment. If anybody would like to join us please email at hill.stpierre@gmail.com


Speaking points and assistance with testimonials will be provided by contacted Zandra, via email found below.


Here is some general information on the bill.

HB 89, Requiring the Attorney General to File Lawsuits Challenging the Patient Protection and Affordable Care Act and the United States Environmental Protection Agency's Cap and Trade Program

When: Thursday, January 13^th at 1:00 PM

Who:  State Federal Relations and Veterans Affairs Committee

Where: Legislative Office Building - Room 203, 33 North State Street, Concord

HB 89 seeks to direct the New Hampshire Attorney General to join the Florida lawsuit challenging the legality of the Patient Protection and Affordable Care Act. (The bill also seeks to direct the AG to challenge the U.S. Environmental Protection Agency's cap and trade program requirements.)

To date, 14 of 15 court decision have upheld the constitutionality of the new health law, which provides benefits to New Hampshire families and small businesses. 

HB 89, itself, is unconstitutional in design. However, opponents will use this bill to promote their message through the media and as part of the national dialogue - especially with the U.S. House of Representatives' vote to repeal the Affordable Care Act (ACA) scheduled for one day before this bill is heard in New Hampshire. 

Take Action!

While there are other pending bills that will address the new health law, HB 89 is the first to be scheduled for a public hearing and will no doubt draw media attention and speculation. NH Voices for Health and other allies can use this opportunity to highlight the many ways the Affordable Care Act is helping Granite Staters. Help us educate legislators, reporters and the general public of the importance of the new health law in New Hampshire and the strong support for it.  Please join us in demonstrating strong support for the Affordable Care Act.

1.   Testify. We need personal stories to highlight the immediate and needed benefits of the Affordable Care Act. NH Voices for Health can provide a one-on-one training on how to testify at the State House and share sample talking points and tips to help you prepare your 2-3 minute oral testimony.

2.   Sign-In. In addition to oral testimony, we hope to show broad and deep support with a strong showing of people signing in opposition to the bill during the committee hearing. This requires only attending the hearing and signing the official form posted in the committee room.

If you or one of your members can participate in either of these activities on Thursday, January 13^th at 1:00 PM, please email zandra@nhvoicesforhealth.org or call (603) 225-2471. It is very helpful for us to know how much support we have in the room, and to coordinate testimony as appropriate.

If you are unable to attend this Thursday but would be willing to participate in a future hearing, please submit your personal story to the email above. 

Scared to Death

 I'm afraid again.

I'm scared. I'm scared with the type of fear that keeps me up at night with my heart and mind racing with anxious thoughts of how I'll survive.

It's the fear I experience when I know my life is on the line, when I'm confronted with a relapse or a new therapy. I'll find myself staring into the air, lost in my thoughts, hiding in the bathroom so no one sees the stress or the tears.

I'd thought I was safe. I thought I had been thrown a lifeline, but now, that lifeline is in jeopardy.

I thought I would be able to receive treatment for my cancer indefinitely.

I thought I'd been granted the freedom to fight my disease for as long as my body could handle.

I'd finally allowed myself to believe I could live another decade pushing my cancer back, keeping it contained, keeping it at bay.

But now, again, my life is threatened, not by my cancer, but by the knowledge that insurance payment maximums could be reinstated by a possible repeal of the Affordable Care Act (ACA).

I have a 2 million dollar maximum from my health insurance that was repealed by ACA. If this is again put in place, my health insurance will tally my costs and stop paying for my care.

Overnight hospital stays are $1380. My chemotherapy alone can be upwards of $8000 per infusion. This does not include any of my other medications. Zofran, an anti-nausea drug created specifically for to prevent chemotherapy induced vomiting is over $750 for a 30 day supply.

I all ready spend $20,000 yearly, the entirety of my social security, on health care costs.

I'm depressed. I'm reaching for my chocolate.

I was all ready depressed today, because I came across the perfect pair of glasses and fell in love, only to realize they were $300, and my insurance only covers new frames every 24 months and new lenses every 12.

I've been driving myself crazy looking in the mirror, watching my face swell, slowly losing my dimple from my prednisone induced moon face, and having to wear glasses that don't fit anymore.

Then I started thinking about all the treatments I've wanted to undergo and had to bypass due to my inability to pay, all the doctors I've wanted to consult for the newest innovative treatment ideas, none of which are covered by insurance, because though their used abroad successfully, have not been approved by the FDA.

Having to ration care due to cost is something I never thought I'd be confronted with, but I am. The most promising of treatments for my refractory disease: hyperthermal radiation or a personalized vaccine could bankrupt my family.

For those of you who are anti-reform due to fears of rationing, rationing is all ready occurring. It occurs everyday due to spending and hiring freezes in hospitals due to uncontrolled inflation in healthcare.

The year prior to ACA, health care costs rose on average 28%. Since the implementation of ACA, inflation in healthcare has been 7%.

There is no arguing those facts. Something changed in the past year, and the biggest change has been the passing of the ACA. Cost containment due to the ACA is something that is benefitting all Americans, but the ACA may have done less  to protect the sick than many think.

 It has allowed children to stay on their parent's insurance plans until 26 years old.

Children, under the age of 19, can not be denied insurance due to pre-existing conditions,  but those older than 19 (aka me) may or may not have the option of high risk pool insurance.

Only Thirty-three states have high-risk pools.

FYI- NAHU's Health Care Coverage Options Database can tell you if your state has a pool, provide you with contact information for that pool, and also tell you the basic participation requirements.

If your state doesn't have a high-risk pool, well, you could be screwed.

 Twelve states use other means to provide coverage for medically uninsurable individuals such as requiring that all individual policies be issued at least part of the year without regard to medical condition (so you can be treated for your cancer, MS, or diabetes for 6 months of the year), coverage can be provided through a designated carrier of last resort, or coverage through a reinsurance pool. 

The remaining five states have no means of providing individual market access to people with catastrophic medical conditions. High-risk consumers in those states may have trouble obtaining coverage. 

These are the people that are still screwed and I suggest you move, but even that may not help you.

To find out the options for high-risk health insurance consumers in your state, please look at NAHU's Health Care Coverage Options Database. To find an insurance agent or broker your area go to NAHU's agent locator.  See http://www.nahu.org/consumer/hrpguide.cfm

Soooo since the high risk pool was implemented to help those experiencing a health care catastrophe, you'd assume it would also be affordable? 

Wrong again.

Risk pool health insurance is more expensive than traditional individual insurance. Pool members, by definition, are those who are considered to be medically uninsurable. State laws generally cap risk pool rates between 125-150 percent of the base individual market rate

Example: If the average standard individual market base rate in a state for a 30-year old male is $100/month, a medically uninsurable male of the same age would pay $125-$150/month for comprehensive coverage in a risk pool.

After discussing my options with my husband, we decided not to go forward with other possibilities for my treatment since it would threaten our way of life, possibly bankrupting us.

I've been fortunate to have conventional coverage, but if a maximum is enforced, I would likely die due to inability to pay.

If I don't die, my house would have liens placed on it. My car could be repossessed. Then how would I travel to treatments? Where would I go to recover after my treatments?

And speaking of my husband, I've often wondered what would happen to me, or any other woman in my situation, if he was abusive, and I wanted to leave the marriage. 

I thought The ACA had given women the option of health care independence. I thought it had given people the option to secure affordable insurance independently and affordably outside of a companies' insurance.

I'm at J's mercy as the holder of our family health care plan.

If I were to ever leave, I'd have the option of negotiating that he maintain my health insurance through his current insurance plan. I could have it placed in our divorce decree, but that doesn't gaurantee that in a situation like separation a snubbed spouse may allow the plan to lapse sending the sick ex into the abyss of being uninsured with a pre-existing condition.

Losing insurance coverage is a fear as great as a severe cancer recurrence, because losing coverage would send me into the impossible abyss of looking for insurance with a pre-existing condition.

I'm classified as uninsurable. I had thought that the ACA had repealed this form of discrimination for all of us, allowing freedom and hope for those that have more problems than just disease, but at least the children are protected.

Please don't allow that to be taken away.

The U.S. House of Representatives' vote to repeal the Affordable Care Act (ACA) has been scheduled for January 12. Please take the time to support the ACA. Sign petitions at http://healthyamericans.org/health-reform/ or join NH voices for Health.