Monday, October 31, 2016

Hardships of the Financial Kind

My husband and I fought the other night. Not physically of course, but it felt like it when it was over. Money is never an easy topic to talk about when there is not enough of it. It is even more difficult when the main reason for the hardship being brought upon my family is directly related to me. No, I didn’t buy a fancy new car or book a lavish vacation. Our hardship is my medical bills, and the only way to fix it--to put it bluntly--is to quit treatment, let cancer take over and die. I am not ready to do that.

When my husband and I were first married, our wants for our lives were similar: a house, kids, pets, and a future free from financial stress. Along the way, there were a few set-backs in his career, but we knew we could recover from those things, eventually. I patiently waited for the day when I could spend $200.00 at the grocery store without thinking and worrying about it all the way home. It finally happened but only briefly. Eleven years ago we were first hit with the financial trauma created because of my disease. The third time ripped away any fantasy we had of ever recovering. Medical bills from the past and present arriving in our mailbox are a real threat to our current way of life.

We have employee provided insurance and so far it has never denied a claim. Since many participants in this insurance plan are able to pay their premiums—at least I assume--there has been enough money to allow me to continue receiving treatments. For that I am grateful, extremely. But presently, our 10,000 dollar a year deductible arrives too quickly and our bills are beginning to overwhelm us.

My treatment center believes my husband makes too much money therefore won’t consider lowering our payments. The first time a payment was submitted below the minimum required, the call came threatening to send our account over to collections. We are not looking to not pay our bills. They are OUR bills. But, a lowering of them would help reduce our stress from this monthly financial burden.

Because I didn’t pursue a career, instead opting to stay home and raise our children, my income earning potential is low offering little to no relief from the enormous, ever-increasing debt looming over us. I simply have no way to generate enough income for us to recover. Adding to this conundrum, I have fears of starting a job and then having to quit because of side-effects or the worsening of my disease.

I often try to make myself feel better about the situation saying, “I would rather be poor than dead.” It is a true statement, but financial struggles can suck happiness out of you almost as much as the cancer can. There is another saying I often think about: if you don’t have your health, you have nothing. Never has a statement been truer and is relevant no matter what your income level.

After I was diagnosed stage IV, I questioned why I chased the dream of a big house with some land. As a young person I found there to be something marvelous about a spacious house with large windows spilling sunshine throughout its rooms, crown mouldings adding those finishing touches to at least some of those rooms, a whirlpool bathtub in the master bath with an adjacent tiled shower, a wrap-around-porch, and double-stacked ovens with two sinks in the kitchen. At that time to have those things seemed to be a grand accomplishment. Surely having them would make life better. I never considered I might one day become too sick or too old to take care of it.

Although I didn’t obtain the huge house nor those grandiose household items, I did obtain a house. A house with a front and back porch, one oven that works now intermittently, one kitchen sink and no whirlpool bathtub. The crown moulding was never considered since the added cost was deemed unnecessary and those super large Anderson windows found in the pages of the housing magazines of which I gazed, never brought the sun into my home.

I wanted nice expensive furniture. We did manage to buy a nice couch and bed many years ago. The bed remains nice, but the couch is falling apart. Other items in my home are either hand-me-downs or cheap crap I bought in my twenties. Our books are held by Walmart bookshelves which I am thankful to have since what is life without books? Instead of a home filled with expensive décor, we filled it with four kids and a variety of pets; a decision I never will regret.

Often, our house didn’t feel big enough with so many people living in it. The closet space is inadequate and the upstairs bathroom shared by three of our children is ridiculously small. Today, with the kids beginning to find their place elsewhere in the world, it is starting to feel bigger.

The carpet upstairs is the same carpet that was first installed 16 years ago--carpet really shouldn’t be around that long. The paint on our walls is dull and dirty. It too is old. The shutters on our outside windows are faded, and the screen on the back porch is either missing or needs replacing. With all of its flaws, it provides us protection from the weather. I do so hate being cold. Please don't take my complaining to mean I am not thankful to have it cause I am.

As you may know or can imagine, any conversation that involves not enough income to cover the bills can leave a person feeling helpless, afraid, and without solutions to fix the problem, lost. I have searched on-line and there are no organizations that I have discovered offering help to people with high medical costs who have an income above a certain level of which we fall.

As is always the case when debt accumulates, the rich can pay, the poor get help, but the middle continue to struggle leaving them thinking their only option will eventually be bankruptcy if that is even a possibility. We prefer not to do that. We take pride in our ability to work and pay for what is our responsibility. Unfortunately, it does appear our situation is slowly becoming more than we can handle.

As sad as the idea seems, I can't help but wonder if the time has come to consider a smaller place. Should we consider selling our house and moving? While selling our home might seem like it would give us the money needed to pay my medical costs, there would still be a monthly payment for housing of some kind so in the end, would it help? And, though my material desires have lessened immensely, my husband would suffer, something I do not want. Our home is more than the money it took to build it or a desire to have a nice place to live. Keeping it or not keeping it is not just about me. There is another person, my husband. Separating himself from it would not be easy.

The construction of our house began in 1999. Since my husband and his father participated in its construction, it has great personal value attached to it. His literal blood, sweat, and even tears went into its creation. The frustration of working with the difficult personality of his dad has been thrust upon every nail driven by him into the wood that keeps it standing.

Before the framing began, he worked every weekend cutting, chopping, and carving out a place on that wooded property for us to raise our kids. It was to be our special place on this earth for us to share, to enjoy our lives, to grow old.

He continues to tame it when hurricanes named Matthew blow winds strong enough to uproot the trees that were planted 10 years ago and had reached a height of 30 feet or more and now must be cleared away. He dug holes in dirt so hard one summer it was more like concrete than soil. In each hole he placed fence posts eventually surrounding the house keeping our children, our dogs and our goats safe. There is also a chicken coup behind our house that he built during a chicken hatching project the kids and I did. Those particular chickens are no longer living, but others have taken their place and provide us with fresh eggs almost daily. In the back of the property, we buried beloved pets. My border collie who I trained for five years in agility winning several blue ribbons will be joining those pets in the near future as his health continues to decline.

In this house we watched our three and four year old children turn into adults. We carried our last child from the hospital into this house to begin her life. It is the only one she has ever known. This land this house sits on is not just a small spot on an enormous planet to my husband. His now ailing father and his mother gave it to him, separating this tract of land from their farm where cows continue to grow on their fields of grass. His father has a fantasy too: the land is to stay within the family, always. All of these reasons are why my husband cannot bring himself to consider the possibility of leaving it.

I look at this house as the place I cry in, love in and laugh in. It is home. I walk out onto the front porch and feel the cool breeze blowing from the north and love the fact I cannot see my neighbors because of the trees surrounding me. I love that our animals have a large fenced yard of which to roam and explore. I love when I walk out on the back porch I get to enjoy my plants growing in their pots while listening to the roosters crowing and the hens squawking loudly. The voices of our goats take note and begin talking to me, asking me to bring them food scraps from our leftover food in our fridge. I remember our past; the birthday parties held here; his sister and my sisters, sitting here in the rocking chairs conversing and laughing. I know how hard we both worked to make this place a home, how we still do.

As time moves along, our inability to pay our medical debt may end with our losing our home. If we cannot pay, the hospital will have no choice but to take action against us taking the only thing that we have of financial value. It saddens me greatly as it represents another kind of acceptance that I must face; one that everyone must face: change happens; nothing ever stays the same; in the end, we must let go of the things we love.

Our conversations concerning money are weighted with too much emotion allowing angry words to seep in. We both see the situation in different ways. Being financially strapped makes a house seem less important to me especially since I am thinking about the end of my life and focusing on what I need to do before it ends. He on the other hand sees his life extending into his eighties. He could spend those many years in this house; this house, our home, the one with so many memories attached, memories inside and outside the walls that hold it together.

So, here we are, facing the very real aspect of what increasing medical debt can do to a family and not knowing what to do about it. The hospital financial counselors where I receive treatment are following their guidelines concerning who can receive help and who cannot. I have no idea how high our debt-to-income ratio must get before they deem it necessary to reduce our monthly payment due. We have provided all our information but have yet to see any relief.

No matter the reasons, when people don’t pay their bills, hospital costs increase along with insurance premiums. The burden of those costs will always be on those people who have the means to pay. It doesn't seem right, but it is the way it is. I don’t have a solution of how to give relief to families like mine who have medical bills beyond their ability to pay. No one who lives with a terminal or even a chronic illness for any length of time that does not earn a great deal of money can avoid the financial impact of it.

For those of us who are middle income earners, bankruptcy may be the only relief we can find so we can keep our home. It does not feel good to me because bankruptcy also takes money from people in the form of higher interest rates on the loans they receive from banks. Like everything surrounding cancer, choices are few. The only choice we may have will be to file bankruptcy. For now, I am an unwilling participant knowing my death is the only thing that will bring any of it to an end. 

Tuesday, October 25, 2016

My October Surprise

Yesterday, after a night filled with anxiety not offering much sleep, I pulled myself out of bed, got ready, and headed for Chapel Hill. For reasons no one I asked at the hospital could explain, all of my appointments flew by with only a minimum amount of waiting, so unusual.

After my CT scan -- yes it was THAT kind of day -- I couldn't stop my tears. All my fears were surfacing. All I could think about was: there is no way my scan could be good; my luck surely was coming to an end.

Well . . .

As unbelievable as it may seem to me, my scan was clean. Nothing new to see!

As I type this, I still can't believe it. For another four months I can put that monster into its closet and hope it suffocates. I am free today to live my life. Today, I am one happy cancer patient!

 

Sunday, September 25, 2016

Real Breast Cancer Awareness


Pink merchandise
Me in 2010
in October seems fun.
Cute little trinkets
to display, and to wear,
promoting Breast Cancer Awareness.

By spring there’s the tintinnabulations of joy.
People donning pink boas,
pink shirts and pink socks.

Walking and running,
raising money for research
racing to end this disease.

Celebrating survivors,
the months passing quickly,
some 5, 10, or 20
years in remission.

Year after year
the excitement continues.
You can beat this!
You’ve got this!
Encouraging words
for each new diagnosis. 

Mastectomies, lumpectomies,
radiation and pills,
chemicals rushing through veins,
will this save me?

Treatment now ending,
nurses harmonizing in song,
“Hey now, hey now,
the chemo’s all done.”

Smiling while taking
the balloons you are given,
ending the hugs,
heading for home.

Releasing balloons
sending them into the sky
lightening a burden so heavy,
saying goodbye to your cancer.

Saving the ta-tas,
touching your tits,
sexualizes, trivializes
your cancer--it hurts!

Harming the cause of
Breast Cancer Awareness.
Down-playing how serious,
making people complacent,
keeping their money instead of donating,
paying little attention to tax payer funding,
thinking breast cancer is no longer killing.

The hushed, dying voices
of those now stage 4,
ruining the party,
knowing the reality,
not everyone is saved.

Education, elucidation
must be an integral part
of the awareness campaign.

Reaching and teaching,
so everyone knows,
more money is needed
spurring research ahead
creating more drugs,
allowing more living.

Please know that breast cancer
is not always a lump,
could be dimpling,
a firmness or thickness of skin,
any redness, nipple changes,
or discharge of yellow.

Thousands upon thousands
will die every year.
Not only women, men too!
of all different ages,
suffering—mentally, physically,
unimaginable pain.

Mechanisms inside,
mechanisms outside
of breast cancer cells
untamable, unexplainable.

Groupings of ER’s and PR’s
and HER 2 neu’s
-- estrogen, progesterone,
human epidermal growth factor 2.
Positives, or negatives, and combinations thereof
providing fuel
for an unruly beast.

Ducts and lobules, receptors,
proteins, hormones and genes,
inflammatory, Paget’s, Papillary,
breast cancer is not one disease.
It is many, you see.

Mutating cells from the breast break away
taking a ride on the river of life,
delivering their package of death.

Landing in organs where conditions are right
to grow, to mutate, to reproduce, to sleep.
Not dying
--like normal.

Outwitting, outmaneuvering,
unstoppable it seems.
Check point inhibitors,
immune system trickery,
blocking, resisting,
the chemicals infused.
Indefatigable, unreachable, undefeatable,
it thrives.

Breast cells in livers, in bones, in lungs, and in brains,
consuming each organ ‘til no longer working.
It’s still breast cancer;
it is always the same.

Metastatic, late stage, advanced cancer,
whatever the name,
killing all of the people
caught by surprise
--de novo—
stage 4, from the start.

Despite what is thought
early survivors don’t always survive
this wretched, disfiguring,
debilitating, insidious bane,
becoming a part
of the INCURABLES
--like me.

Hope floating away
with the helium balloons
falling and crashing,
back down to the ground,
when hell came knocking
upon my front door.

Life derailed from its course,
stepping into the darkness,
causing memories lost,
by the merciless disaster
of metastatic cancer.

Rendering me sightless,
the pain deep within,
my tears will be falling
for the rest of my days.

When earth opened up,
I stood on the edge,
falling into despair.
The party of pink
for me is now dead.

I’m terminal now,
death found in my lungs.
Threatening to take
my unfinished life.

As the disease spreads,
it continues to change
into millions of cells.
Some working one way,
others another,
in the same tumor.

Which drug will work?
Is anyone’s guess.
Why one patient responds
while another advances
is a scientist’s torturous affair.

The happiness thief,
stealing mothers, fathers,
daughters, sons,
brothers and sisters.
Killing the body
loved by another,
in one to three years.
Sometimes it takes longer
--if you’re lucky.

Can we all be survivors
wearing of pink if we choose?
Can side-effects lessen
from treatments not ending?
Can remissions remain,
no longer fearing progressions?

Our stories continuing
stepping out from the darkness,
no longer invisible,
no longer dying,
but living, YES LIVING!   
with cancer
no longer out of control.
And, maybe, just maybe,
one day living
without.

Saturday, September 3, 2016

1,800 Miles of Summer


Sometimes cancer sits in my mind quietly. Those are the best of days. With my scan results bringing good news at the end of June, my summer hopes became plans.

Kay and I
Before launching into my biggest plan of the summer, I took a short trip--well, two hours one way--to see a friend who was staying in North Myrtle Beach. Our history goes all the way back to the late 80's. Shortly after she moved into my apartment, we became friends. Sharing the same birth date in November was a bonus to our relationship. On the day we turned 21, we waited till 12 am to go to a bar and have our first legal drink. That day would not have been the same if Kay had not been a part of it. Our recent time together was short. Nevertheless, I enjoyed every minute.

As the end of July approached, I had everything in place for our grand trip taking us through several states. The reason for this trip came as a result of my daughters, having just graduated from college, heading to their first post-college jobs. They were moving far away from home, and I was determined to take part in it.

Leaving the men at home to work and take care of our many animals, the girls and I embarked on this whirlwind of a trip. Before going directly to the places my daughters needed to be, we took a few detours. One to see an old friend and another to spend some time with my sisters and their families. First, we headed southwest to Atlanta, GA then north to Georgetown, KY, on to Cleveland, OH, east to Washington DC, and finally, we traveled south toward home. With dozens of hours passing and many miles of road under us, our journey was executed with only a few unexpected events along the way.

Since my van's odometer shows a number close to 330,000 miles, we decided to rent a car--a brand new black Kia Sorento. The pick-up when I pressed the gas pedal was appreciated, but this old body of mine was wishing I had the familiar seat of my van putting me at just the right height for the sun visor to keep the blazing ball of fire in the sky from hindering my ability to see all that was before me.

Me.....Meredith
Our first stop, Atlanta GA, is the home of a woman I met during my first chemotherapy infusion in 2009. She was a fantastic walking partner—fast was her only speed. As we walked she lent me her ear while I lent her mine. We shared our fears, struggles, and laughable moments through chemo and beyond. Almost a year ago, she moved away from Wilmington, and I had not seen her since.

After an evening of pizza and conversing, we settled in for a good night sleep. The morning brought hopes of a good day for travel. Meredith prepared coffee, and we spent time enjoying the morning air from her back porch. Her breakfast sandwiches were eaten and time passed too quickly. A few pictures were taken, our farewells were said; Kentucky was waiting.

As we drove my youngest daughter saw unfamiliar landscapes that brought awe to all of us. Living near the coast, land is mostly flat so mountainous views bring lots of oooh’s and ahhh’s. Such amazing work has been done by people constructing roads and buildings on the sides and over the tops of mountains. We marveled at the beautiful fields that could be seen for miles upon miles. Where we call home there are miles and miles of farm land, but it is not always easily seen. After a few acres, without the benefit of being atop a mountain, trees eventually obstruct our view.

Debbie and I

We reached my sister’s home about an hour behind schedule—not bad I thought. Upon arrival our adrenaline raised a little as we prepared for what we were about to do. My sister and her family live on the side of a hill with a waterway below—actually just one continuous mountain if you consider how high we were above sea level. The decent of her driveway is quite unnerving if you don’t do it often. The small hump at the top sent our vision over the treetops. Then the nose of the car began to point downward—yikes! Thankfully, our brakes were in peak condition so we didn't slide into her garage.


Debbie took the picture.
Trevor was at work during these pictures.
Dinner was prepared that evening and good conversations were had by all. The following day we went into town to see my sister's dog grooming shop. It was beautiful. Funny way to describe a fur-cutting assembly line I know, but it was BEAUTIFUL!—clean, organized, ready for business.

Throughout that day our children were getting along splendidly making this visit one of the better ones.


Next, as was planned, we moved all our things from this sister’s house to my other sister’s house so we could spend time with her and her family. She lives in the same Kentucky town so it was an easy transition. We had plans to go to the zoo, but with the temperature in the upper 90’s and the threat of rain we stayed inside. That evening everyone moved to her backyard for some good fun playing corn hole--basically horse shoes with bean bags.

Donna and I
The following evening my sister treated the kids to roller-skating. I sort of regret not participating, but I had a nagging thought, What if I break my leg or worse. So I refrained. Instead my sister and I chatted while watching the kids and her husband cruise along on their wheels. Well, most everyone cruised. My youngest daughter had never been skating before so her cruising was stop and go. That didn’t prevent her from enjoying herself despite the many bruises inflicted to her knees with each fall.

Cousins (and one boyfriend)

Bing Images--Cleveland's Chandelier
Cleveland, OH was our next destination. It would become the new home for my eldest--by 20 minutes--of my twin daughters. As the miles increased on our odometer, the sites of the Cleveland area came into view. Gone were the rolling hills of Kentucky and Ohio. What we saw were acres and acres of concrete roads and buildings rising out of the land. Steel production and other industry were evident everywhere. All of that was forgotten though when we reached the district where she would be working. The efforts to bring theater to Cleveland and energize the city were visible. One odd attraction is an enormous outdoor chandelier in the middle of the theater district. It is certainly unexpected but eye-pleasing nevertheless.

While taking in the sights of the rest of the city, two billboards caught our attention:

Bing images--Donald Trump and Ted Cruz
The bottom line says:
We are not going to live forever
so why should the earth.













The Republican convention had been held there just under a week before we arrived so billboards such as these should not have been a surprise to me. But, I was surprised.  I don't believe I would ever see billboards such as these where I come from. We had to drive pass them one more time to make sure what we saw was ACTUALLY what we saw.


Excited is one way to describe how my daughter was feeling as we toured her new home. The living accommodations, I found were beyond my expectations. I felt comfortable leaving her there, but I couldn't hold back a few tears as we said our goodbyes on her new front porch.

After moving her things into her new home which she will share with 15 other people also working for this theater production company, we headed to our nation’s capital. Despite some rain limiting our visibility, Pennsylvania, Maryland and Virginia were beautiful from the viewpoint of the roads we traveled. The greenery of the farmland was spectacular.

My second daughter was due in DC the following day for training in preparation for her new job. The group would fly to Japan the day after to spend the next year helping Japanese children learn English. There was no way I could take her to Japan, so I had to accept that Washington DC was my stopping point.

As we were approaching our exit for the hotel we had booked in Virginia, we heard the sound of metal scraping against metal on the right side of our car. Feeling a jolt, our car was pushed slightly left. It took me a few seconds to adjust my brain to what was happening. We had been hit. The gray Toyota Camry that side-swiped us sped up and moved in front showing no sign of stopping. My daughter sitting next to me called 911 while I pursued the car to get the car’s plate number. I blew the horn hoping to get some kind of reaction from the driver. Mostly I blew my horn because I was mad. I had done my best NOT to damage this car and this person changed that. How careless and all in an effort to not have to get behind me as a line of orange barrels forced traffic to merge into my lane.

As I followed the hit-and-run offender my daughter read the tag number to the operator. The 911 operator insisted we stop following and pull over, so we did. Our location was relayed to an officer who arrived quickly. Behind him another patrol car parked. The first officer gathered all the information. Then after asking me to follow him to a safer area to park, he asked that we wait. He and the other officer left to find the driver. There we remained going over in our minds and to each other what had happened. Once the two men returned, I was given the driver’s insurance information and a few other details that my insurance company would need--incidentally the driver lived close by. I asked the officer what the driver said about the accident. His reply was, “She doesn’t remember hitting you.”

“What? How? I said.

“Around here a lot of people say they aren't aware they hit someone." Based on our conversation prior to my question, his response suggested to me that where he once lived, in South Carolina, people didn't drive like that. The officer ended our conversation by telling us to be safe. I closed my window, put the car in drive and began listening to the familiar voice of the GPS guiding me to the hotel.

Although I was determined to give the car back to Enterprise Rent-A-Car unscathed, this incident again proved that most things are out of my control. For now my insurance company will be investigating the accident. Hopefully they will find her responsible, and her insurance company will pay for the damages.

Weary, hungry, and thankfully unhurt, we made it to the hotel parking lot as the midnight hour approached. It was much later than we planned, but we made it.

On the final day of our trip, we went to Dulles International Airport to see my daughter spend her last few hours on US soil; for now Japan would be her new home. As she was walking to greet her group and my youngest daughter and I were walking back to the car, she turned in our direction. We turned at the same time finding her smiling face and her hand waving goodbye. Those moments when goodbyes are necessary, I try so hard to make them a permanent visual memory. Because living is fraught with uncertainties, the "what ifs" pounded inside my brain. It was hard, but we waved back.

My youngest and I, settling back into the car less weighted down with suitcases and people than when we started, began our drive home. Movement for a long while on an interstate in Virginia was slow. We never saw an accident, but there must have been one. Traffic was inching along on another roadway as well making sitting exhausting. This was all unexpected since it was not rush hour traffic. It was a Saturday for crying out loud!

Once we were in North Carolina we sailed home. “Nothing could be finer than to be in Carolina”--to use a line from an old Dean Martin tune--describes exactly how we were feeling. A familiar world met our eyes. After nine days of traveling and approximately 1,800 miles later, we made it home.

Thursday, August 11, 2016

Moonshots All Around -- Part II, Data Sharing

. . . continued from Moonshots Part I found in my post previous post.

The White House Office of the Press Secretary released on January 28, 2016 a memorandum outlining the White House Cancer Moonshot Task Force Initiative here. One of the goals, support greater access to new research, data, and computational capabilities, offers hope to those who wish for data sharing between scientists and laboratories to occur more easily. 

Currently, federal law see here says data from most large human trials funded by grants from the National Institutes of Health (NIH) must be reported. Most small NIH grant contracts do not require reporting except for those that involve certain rare diseases. In my investigation of data sharing, I found that for private facilities there are avenues to access data involving an application process. For projects funded with grants at the $500,000 level and above from the National Institutes of Health, guidelines have been in place for data sharing all the way back to 2003.

From the President’s first mention of the Cancer Moonshot Initiative “dozens of new initiatives” have been created. Jo Cavallo, July 25, 2016, explains here and mentions one in particular, The National Cancer Institute (NCI) Genomic Data Commons, which aims “to facilitate access to genomic and clinical data among researchers.” Seems like a good plan, but I wonder . . .

For many of you reading, a discussion about data sharing will most certainly be boring. But you should consider that this will affect every one of you, from the federal taxes (US) you pay to the diagnosis you or a loved one might one day hear.

In my perfect world, data sharing makes logical sense. Progress in science will occur, patients will benefit, and money will be spent efficiently because everyone would have an idea of what the next step is in a particular research area. But my world—our world--is no utopia.

The idea of sharing takes me back to college where, as I worked toward my degree in K-6 education, Cooperative Learning was the buzz. The idea that if you bring different people with differing ideas and knowledge to a group, those ideas can be expanded and improved with input from everyone ultimately producing a better project as a result. Easy, right? But, no.

With any group sharing situation, the ones who work the hardest are not always recognized. A+ work by someone could become B - work or worse for the group. I am not anti-team. I want everyone to work for the same goal—cures for cancers that can be cured and better treatments for a longer better quality life for those that can’t. Team work is how progress is made; however, individual accomplishments not recognized can have the potential to de-incentivize people within the team. Why else do we see most valuable player or employee awards and salary bonuses? Recognition of individuals obviously works.

I agree with David Shaywitz who said in a Forbes article here, “Unfortunately (as one participant observed yesterday), until you can look at each individual researcher, or clinician, or data scientist, and credibly answer their question, “What’s in it for me?” (to share my data), progress is likely to remain slow–a result painfully at odds with the urgency demanded by Biden and deserved by patients.”

I think most humans want to help others despite social media portraying pharmaceutical companies as bad because they only care about profits. But those entities are made up of people, and as I said, I think most care. Please consider why such an assumption that certain companies are greedy and a plight on society might not be true; consider what a researcher might face when it comes to data sharing as they work to see the advancement of science.

As I explained with my example of Cooperative Learning, individuals can become less important than the group. People have an innate desire to be recognized especially when their well-being is tied to it. Although there are some protections in place to prevent theft of scientific information, there are still situations where the hard work of an individual or group can end up in the hands of another individual or group through data sharing especially if it becomes more easily accessed. Some researchers may claim it as their own, though it is not, thus possibly receiving grant money to continue the research leaving the original team with not enough money to continue what they started. Their research stops, the lab receives no public (NIH-National Institutes of Health) funding potentially causing salaries to remain stagnant, promotions stopped, company morale plummets, and profit margins suffer. When profits cease research cannot advance, new equipment cannot be bought, and new employees cannot be hired. The researchers’ well-being and personal satisfaction is jeopardized--or worse their jobs are lost. If everyone faces this same fear, new discoveries will be impacted. 

When the pressure is on to secure grants for research, to get a drug to market, or to protect a company’s investment, what I will call “the fudging effect” could and probably does occur. That is: in the reported data, details may be left out or inaccurate information provided. It is wrong, but as you can see in the above argument, people have a lot at stake that they do not want to lose.  

For me--as someone who wants the newest research as soon as possible--it would make me happy to have access to all research even at its earliest. But, then I think, no, I am wrong about that. Data in many publications is sometimes difficult to comprehend since I am not trained to interpret that data in those documents and it is long, complicated and I might add—boring at times. Plus misinterpretations of medical research already exist. Easier access to data could potentially make this situation worse. Our society has plenty of medical untruths that cause people to believe in preventive measures of diseases, cures and treatments for those diseases that will absolutely not help them. This could become more food for pseudo-science peddlers. I say, let the researchers do their jobs, repeat their research as many times as needed to ensure results are reproducible and accurate signifying a real scientific advancement. Perhaps the attention needs to be directed toward how to overcome mistakes and biases in research, in peer reviews and publications instead of the need for more access.

With the excitement generated about data sharing, I am having dollar signs spinning in my head. Those dollars aren’t going to research either. Data sharing and the computer programs to track and submit data that will be needed, new administrative guidelines, and everyone converting to a new system that will grow from this project will cost a lot of money. Instead of research, money will be used by pharmaceutical companies and researcher laboratories to make sure they are complying with the new rules.  Scientific advancement will be slowed as our government reorganizes and establishes new departments when what may really be needed is some tweaking of what already exist. 

Steven Lewis on Feb 15, 2016 in the Yale News reported here that “Robert Alpern, dean of the Yale School of Medicine, said: "We hear all the time from people outside of science that science is slowed down by the lack of data sharing. Data is shared in science and at just the right time."

And then Carolyn Johnson in her article here in the Washington Post in March of 2016 said this about data sharing: "Despite the considerable lip service that data sharing gets, the researchers behind the JAMA study determined there are relatively few people actually taking advantage of the data."

Perhaps, data sharing is not as much of a problem as the Cancer Moonshot is implying.

Finding money to fund research for all cancers is the real issue.

Maybe, we should all drink a couple of jiggers of a new liquor concoction and call them Moonshots. At least then we will feel good for a little while. The Cancer Moonshot is giving me a headache.

Sources:
https://www.whitehouse.gov/the-press-office/2016/01/28/memorandum-white-house-cancer-moonshot-task-force
https://www.statnews.com/2016/06/29/biden-clinical-trials-cancer/
http://www.ascopost.com/issues/july-25-2016/the-national-cancer-moonshot-lifts-off/ 
http://www.forbes.com/sites/davidshaywitz/2016/06/30/first-hand-account-the-biden-moonshot-summit/3/#74f622e079df,
http://yaledailynews.com/blog/2016/02/15/obama-announces-cancer-moonshot/ 

http://healthitanalytics.com/news/why-sharing-cancer-big-data-is-key-to-personalized-medicine

http://www.forbes.com/sites/arleneweintraub/2016/01/26/here-are-the-sticking-points-for-biden-big-data-and-cancer-moonshots/#3112c4ae2299
https://www.washingtonpost.com/news/wonk/wp/2016/03/29/pharma-companies-are-sharing-their-data-but-few-are-looking/
http://www.npr.org/sections/thetwo-way/2016/02/01/465153594/white-house-to-request-1-billion-for-cancer-moonshot
http://www.bna.com/moonshot-improve-trial-n57982066347/
https://grants.nih.gov/policy/sharing.htm

http://www.cancer.gov/grants-training/grants-management/nci-policies/genomic-data/about-policy

Friday, July 15, 2016

Moonshots All Around--Part I



When I first thought about writing this post, I imagined describing the Cancer Moonshot Initiative, giving my opinion and hoping after sharing what I had learned that someone else learned something too--this is the Cancer Classroom after all. Easy, right? Well, no, actually. The complexities of the Moonshot have made it a hard post to write, and my inability to quit asking questions about each new piece of information I found has made this a difficult post to keep short. But, here I go anyway. Luckily, for you, I have broken it into two parts. 

note: This post is not about Cancer Moonshot 2020 find here. It is about the Federal Government’s National Cancer Moonshot Initiative. 



Are you excited about the Cancer Moonshot Initiative? Or, are you like me?--a skeptic--always trying to figure out if the latest excitement of the day is really just another feel-good attempt in the political world to cause the American people to stop and say, “Yeah! This is exactly what is needed to stop the 2nd leading killer of our citizens."

The issue of curing cancer by our Federal Government is not new. On January 22, 1971 President Richard Nixon said in his State of the Union Address to congress, "I will also ask for an appropriation of an extra $100 million to launch an intensive campaign to find a cure for cancer, and I will ask later for whatever additional funds can effectively be used". The ‘War on Cancer” had begun—with high dollar federal funding. For me, the Cancer Moonshot Initiative is simply a repackaging of this former endeavor with government now playing an even bigger role.

Back in 2007, Barack Obama, before he became President, made a campaign promise to double the federal government’s cancer research spending in five years. It was a promise he couldn’t keep. The economy wouldn’t let him. Perhaps driven by the personal loss of his mom to cancer and in an effort to keep his campaign promise, he introduced the Cancer Moonshot Initiative in his last State of the Union Address in January 2016 later asking congress for 1 billion dollars for the National Institutes of Health for the effort of curing cancer(s). Some of that 1 billion would be made available this year with the rest available next year. Don’t let that number cause you to think no other money has been allocated for cancer research by our government. Vice President Biden already was involved in the handling of 264 million dollars for cancer research. The National Cancer Institute gets around 5 billion a year, plus there are other governmental programs contributing to the cancer research effort. The Department of Defense, the Department of Veteran Affairs, and the Food and Drug Administration are all involved. Heck, even the Department of Energy has a hand in it. Yes, government involvement in the health of our citizenry has grown a lot since the National Health Institute was formed in the 1930’s--information here.

I am not suggesting that good things haven’t or won’t come from our government being involved in cancer research, but before we get all excited about this additional billion dollar enterprise, maybe it would be a good idea to spend some time figuring out if tax payer dollars are already being used in the most efficient and effective way. I am not convinced that more government involvement is going to do a better job than the private industry does. It seems to me all the intricacies of forming this new project will take money away from actual cancer research.

When I learned through twitter that Vice President Joe Biden—who had been named by President Obama to lead the Cancer Moonshot Task Force--would be on The Nightly News with Lester Holt on NBC on June 29th I became a little excited hoping I would learn something new. Tom Brokaw, a famous news anchor from my youth, interviewed the Vice President. The two came together to discuss what likely is an important issue for both men. Vice President Biden’s son died of brain cancer last year, and Mr. Brokaw was diagnosed in 2014 with multiple myeloma, a cancer in the bone marrow’s plasma cells.

Pen in hand, paper underneath, I watched the interview attentively jotting down a few notes as they spoke. I wanted to hear information convincing me that this additional billion dollars for cancer research from our country’s tax payers was a good idea. I wanted to believe this initiative was different than the hype and promises of the past; that the money would not be wasted. Too soon the segment was coming to an end and no one had addressed what the Moonshot Task Force’s main objectives were instead highlighting Biden’s take on rising drug prices with his quip, “What the hell is that all about?” If he doesn’t know, why didn’t he say, "I intend to find out".

He is leading the task force and doesn’t know what that is all about? Hummm, Mr. Vice President let me see if I can help: lengthy expensive clinical trials, government regulations, patents on drugs keeping generics from being produced (although I support protection of intellectual property), better technology, new drug releases, and the involvement of insurance companies. Some might argue profit desires are the problem, perhaps there is an argument there, but have you ever thought that maybe a drug goes up in price rather quickly because the market place dictates the increase, or that insurance companies have a role in setting that increase? Maybe the company is trying to recoup any costs involved in helping people with little income have access to their drugs? Someone has to pay for it; nothing is free. Plus, nowhere have I seen lowering drug prices as part of the initiative, so why did he mention it--drama, attention?

His wife ended the segment saying something about hope. Hope is not what this initiative is about or is it?--hope that it will work, hope that tax dollars are being spent in the most appropriate way yielding the best possible results, and--above all—hope for cures?

Needless to say, but I will say it anyway, I didn’t learn anything new.

Biden also talked about high drug costs on that same day at the Moonshot Summit in Washington, DC. Maybe I missed it, but again I have not found cost cuts for drugs to be part of the Cancer Moonshot Initiative.

During the Vice President’s speech at Washington, DC’s Howard University, he talked about the difficulties of research facilities working together toward one goal and of patients’ inability to find affordable and better care. (Affordable: a word carelessly thrown around even though it means different things to different people.) He explained that the Moonshot will work to fix those problems.

Let me back-up and give some background for the Cancer Moonshot Initiative and its Blue Ribbon Task Force. The biggest goal will be to speed up the advancements in cancer research. What is done in ten years, the President and the Vice President want to see done in five. (This is different than his original promise of doubling the amount spent, but okay, that's fine.) Another piece of the plan is to tackle the sharing of data between research entities to help the first goal succeed. This is to be done with the cooperation of private and public entities. The key areas of research will include: pediatric cancer, prevention and cancer vaccine development, early cancer detection, cancer immunotherapy and combination therapy, genomic analysis of tumor and surrounding cells, enhanced data sharing, and the FDA is supposed to develop a virtual Oncology Center to evaluate products, support diagnostic tests and drug development for the prevention, screening, diagnosis, and treatment of cancer.  Find more information here.

I hope genomic analysis of tumor and surrounding cells is where metastatic disease will get some attention otherwise I don’t see the other pieces of the plan holding promise for me and others like me--unless metastatic cancer is included in the treatment portion of the initiative, but it is not stated that it does.

One billion dollars makes me say, wow! And then I remember that it takes a lot of money to find what is fueling the survival of a cancer cell. Finding a significant protein to attack, figuring out what chemicals can be put together that will target that protein and cease its function are costly. Consider, too, the clinical trials: years of funding are needed to go from ideas to petri dishes to mice and finally to humans. Once the testing begins in humans, specific candidates--who do not usually pay for their participation--must be selected, dosages determined, side-effects acknowledged, end points met. And of course we can’t leave out the costs involved paying researchers for their time and the purchasing of equipment necessary for the work to occur. Then, of course, patents must be obtained and the FDA must approve the drug for consumer use. Consider all the failures and restarts that do happen in order to finally reach something that may only give someone 6 more months of life. I will take the 6 months, but this shows how time-consuming and costly the process is. Condensing research time, fast-tracking drugs to the market place within 5 years may not yield what we are all hoping. None of this is easy and some—perhaps all--of it shouldn’t be rushed.

The other goal of the sharing of data quickly and easily between research institutions will be discussed in my next post Moonshots All Around--Part II.

One thing before I go. I learned this interesting information from Margot Sanger-Katz in her New York Times article in February of 2016 found here. She said:

"Moonshot . . . It's become a popular metaphor for national cancer cures. In 1971, President Richard Nixon announced his so-called War on Cancer in his own State of the Union speech. Here’s what he said: 'The time has come in America when the same kind of concentrated effort that split the atom and took man to the moon should be turned toward conquering this dread disease.' When George W. Bush was running for president in 2000, he, too, called for a “medical moonshot” to cure cancer".

With all kinds of information available to all of us, I think the bureaucrats involved should have picked a different name, don’t you. Where is their originality?

To be continued . . .

References:

http://www.politifact.com/truth-o-meter/promises/obameter/promise/84/double-federal-funding-for-cancer-research/ 

https://www.whitehouse.gov/the-press-office/2016/02/01/fact-sheet-investing-national-cancer-moonshot  

http://www.nytimes.com/2016/02/14/upshot/moonshot-metaphor-on-cancer-is-a-failure-to-communicate.html