Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “cancer”

The Time To Straighten Out Health Care Is Now!

I normally do not discuss politics or religion on this blog.  But when it comes to the topic of health care, there is no avoiding bringing up politics.

First, I want to say that I am completely neutral when it comes to who gets the blame for the situation we are in today in regard to health care.

We all knew, that the Affordable Care Act was not going to be the “cure all” for what ails health care in the United States.  But from the time that it was signed into law, in spite of knowing the misgivings, failures of certain aspects (I refused to say the entire act was a failure because it was not), or dire predictions, Democrats did absolutely nothing to make the act more stable, reign in premium increases, make health care affordable, and reach even more people.  I really do not understand how Democrats, seeing that the Republican Party’s sole existence for the last seven years was to repeal the ACA, did nothing at all.  Whatever the reason, Democrats did nothing to improve on the ACA.

But what we witnessed by the Republican Party’s effort to “repeal and replace,” not only amazed us with disbelief, but shocked most with just how much would be taken away from us, not only just in the repeal phase, but what would be left with the replacement.  For seven years, the Republicans only planned to repeal.  They had NOTHING to replace it with.  And there were no intentions to replacing the ACA.  It should also be noted that Senator Marco Rubio executed a major effort against the “risk corridor”, in which would have actually protected insurance companies from losing their shirts ending up with too many sick people and not enough money brought it from the premiums.  Because of Rubio’s efforts and others, insurance companies were paid less than 15% of what they had been hoping for from the federal government.  And for the last two years, Republican candidates promised their constituents that the ACA would be repealed and replaced with something better.  And yet, there still was no replacement.  Seeing the constituents get nervous, ideas developed.  But now, in a Republican controlled House, a Republican controlled Senate, and a Republican president, the conditions were perfect for the repeal and replacement of the ACA, with the American Health Care Act.  There was one problem.  Some candidates only cared that the ACA got repealed because that is what they campaigned on.  Other candidates gave their constituents their word that they would be no worse off with the new health care proposal.  Then we saw how our government operated.  Meetings were held behind closed doors to “encourage” and “entice” representatives to vote for the AHCA, if only for party loyalty.  In fact, many were threatened that their lack of loyalty would cost them support in their upcoming elections.

Do you notice something so far?  Not one conversation about health care.  Not one word about increasing costs.  Not one word about receiving care that is needed.  No, all that seemed to matter is party loyalty and re-elections.  We, whether Democratic, Republican, or Independent citizens, now know what we are worth.

We need to understand this simple fact.  One of the major issues of the ACA is the skyrocketing insurance premiums and deductibles.  Why are so many of us shocked by this?  But the truth is, even before the ACA, insurance rates were skyrocketing.  The ACA managed to slow those rate climbs a little bit, but of course, are now back to ridiculous percentages of increases.  And the AHCA did not address this issue either.  And why?

The insurance industry cries that it loses money.  Yet, its CEO’s earn 7-8 figure salaries and bonuses.  The insurance industry lobbies nearly a quarter of a billion dollars, putting money in the pockets of our representatives, IN BOTH PARTIES – NOT JUST ONE PARTY, in order to guarantee their profitability.  And of course, the huge tax cuts giing $600 billion to the top 2%.  Imagine the millions, no, billions of dollars going into pockets of CEO’s or government representatives that could drastically reduce our rates.

Look, it is simple.  Insurance companies are not in business to spend money on claims.  Therefore, they can only make money on healthy people.  And most healthy people feel that they do not need health insurance, so, they will not purchase it.  That means, the company that does not want to spend money, must spend money.  On just my case file alone, more than $2,000,000 has been paid for all the things that had to be done to save my life from treatment of Hodgkin’s Lymphoma, to side effects caused by the treatments such as heart damage and sepsis.  Clearly I am a liability for insurance companies, but that does not mean that I do not deserve an opportunity to afford health care.  And without the ACA, I would be denied any further insurance, as well as exceeded any lifetime maximum.  Imagine, not being able to get medical care anymore, because enough money was spent on me by the age of 42.  If I died because of that, too bad, luck of the draw.

And I call bullshit on most of the companies who bailed on the marketplace.  I am sure that some bailed because of the short comings of the “risk corridor” legislation issue, but the majority bailed because the ACA cut into their profit margin.  And some may have even threatened or followed through on leaving the marketplace for political reasons (hiding behind “loss” of course), such as being denied the opportunity to merge with other insurance companies.

Big Pharmacy is another culprit with big time lobbying and CEO pay and bonuses.  And there is no reason that medicines cannot be affordable here as the same drugs are in other countries.

Hospitals.  Remember when you used to get an itemized bill?  You could actually see that you were charged $100 per day for a pillow on your hospital bed.  You could see the Tylenol pill you were given was $5.  Now, just a flat bill, no breakdown, gets sent to the insurance company.

These are the big 3 violators of increasing health costs as far as I am concerned.  Of course the insurance industry and Big Pharm were happy with the potential of the AHCA, they were not being blamed.

But just as the ACA appeared to be rushed through the process to the objections of one party, so was the AHCA to the objections of the other party.  Again, neither side of our government really giving a shit about us, the constituents, the patients.  And we, should be paying attention to who else did not approve of the new health care plan… doctors, nurses, you know, the ones in charge of saving our lives.

As long as greed is the driving factor in health care, we, the greatest nation in the world, still will not provide insurance or access for everyone to health care, while nearly all of the other industrialized nations do have universal health care.  Oh sure, Canada is the easy one to point out about dissatisfaction saying citizens are not happy with it.  But just as there are disagreements in our country over health care, I am certain, so is Canada.  Okay, unhappy with Canada as the example?  It is time to start looking at other countries who use universal health care and see what they are doing right.  I will bet they are not worried about Wall Street and greedy insurance companies.

Why am I so fired up over health care?  Because ever since the day I heard the phrase “you have cancer,” I found myself kicking myself in the ass, for letting an insurance policy lapse that my parents had in place for me as a teenager.  Like many Americans today, I was healthy.  Why would I throw money away to something I did not or would not need?  And this is why the health insurance cannot make any money, and why the government gets so much support from younger voters in support of efforts to take away essential medical benefits such as ambulatory services, emergency services, hospitalization, maternity, mental health and substance abuse, prescriptions, physical therapy, lab services, pediatric care including oral and vision, and preventative and wellness.  They are young and healthy and believe their invincibility does not concern them with health care.

I have worked nearly my entire adult life.  I have paid for my health insurance, when I had it.  You see, prior to the ACA, it was legal to discriminate against people with pre-existing conditions.  On that issue alone, I voted against every candidate who campaigned on repealing the ACA.  From the moment I was diagnosed, I was discriminated against in various forms from insurance to employment.  And having developed issues from the treatments used to cure me, I find myself with more than a dozen “pre existing” conditions.

High risk pools are not the answer either.  High risk = higher cost.  And that means not affordable.  And because you are older, higher risk.  Just look at your auto insurance.  The same thing happens there.  Higher risk drivers such as teenagers, people with prior accidents, pay higher costs.  And the same is no different for health insurance.

Eliminating policy coverage for certain issues, or making only certain coverages available in certain states without the ability to purchase insurance across state lines, makes no sense.  Nor does it make any sense to populate our states according to medical needs as one senator made a comment that perhaps “you would have to move to the state where the coverage was provided.”

But the even bigger need not being discussed, and the most important, is a long time ago, medical care was taken out of the doctor’s hands.  Pen pushers at insurance companies, who were not in the exam room, emergency room, ambulance, were the ones making decisions based on what their “manuals” dictated for their company.  Procedures and diagnostic tools would be denied for reasons such as not “age applicable” or “hunch is no reason.”  I mention these two specifically, because at the age of 42, I complained to my family physician of twenty-plus years, I had a weird chest tightness, for four months, that only occurred at the beginning of a physically stressful period, subsiding in about a minute.  Knowing me the majority of my adult life, she knew I did not complain about anything.  In fact, I hardly saw her except for a seasonal allergy shot.  But at the age of 42, and based on what she knew about my cancer past, she ordered an extreme test for someone my age(even I was not aware of what her hunch was), which resulted in me being on an operating table to save my life 36 hours later before I potentially could die from a fatal heart attack.  Had my doctor gone through al the diagnostics first, as time was clearly not on my side, I would have died.  Was the test expensive to the insurance company?  Absolutely.  But so would have been going through all the other steps, and if time had run out, I would have lost my life.  As my cardiologist said, “it was not a question if I was going to die, it was when.”

Having one story like this is bad enough.  But having been involved in the world of cancer support, I have seen plenty more “cost saving tragedies”.  Like this one, a simply ultrasound that could have detected heart damage at the beginning of treatments, knowing that damage if it occurred, could be detected right from the beginning.  But because statistically, the incidence of heart damage is less than 5%, that ultrasound is deemed not cost effective.  And then millions of dollars later, efforts used to save a man’s life are futile, and dies.

It is time to start looking at the single payer system.  Take the need for greed away from the insurance companies.  It is time to force the drug companies to sell either sell their products to us at the same low cost as other countries, or allow us to buy from those countries.  Hospitals need to be held accountable with itemization.  Doctors need to be allowed to be doctors.  A patient should be diagnosed and treated the same as our government officials who represent us.  Just because we had the unfortunate luck of being diagnosed does not mean we should be denied care.  We need to be able to see the doctors who have the experience and knowledge of our individual needs without wasting time and steps with those who do not have those things, only to end up with the right doctor, only now the situation worsened because the time wasted.  There is not one  cancer survivor that will not tell you, diagnosing and treating cancer as early as possible gives you the best chance at survival.

Of course, there will still be the war cry, “oh yeah?  Canada has universal health care, and they hate it!”  Sure, if you only talk to select people.  And I know Canadians on both sides, some hate, some say it works.  If it is that hard to accept Canada as an example, there 31 other major industrialized countries that have this kind of health care, some dating back to the 1950’s.  Surely, out of 32 countries, there has to be a success story as well as a road map how to do universal health care.  But I will tell you what they do not have in those countries, insurance companies lobbying against universal coverage.

One final fact, universal coverage is the only thing NEVER having been considered by our government, only discussed by one or two senators.  But plenty of time and action has been put into things that do not work, or will not work such as the ACA and the AHCA.

It is time for us to be the great nation that cares about its citizens, not just as a country, but as many of those who protest against health care for all, and call themselves people of faith, you need to put your money where your mouth is.  Sure, you may be young, healthy, and wealthy.  But health care is not just about for who can afford it.  And if you are foolish like I was at age 19, it could be too late.  And sure, there are plenty of other benefits besides never having to worry about seeing any doctor, being treated quickly before the situation gets too bad, prevention will be better.  Sure, there would probably be a tax to income, but the trade off is minimal compared to the sky high premiums and deductibles that otherwise would be paid.  Face it, would it not be better to pay a tax of $20-50 per paycheck as opposed to having to pay $1500 a month for insurance, and a $10,000 deductible?  Again, if you are young and healthy, you cannot afford to think “it won’t happen to me.”  I have met enough of you over the decades.

People are dying while our government fights for party loyalty and those lining their pockets.  It is time to look into making a single payer option our nation’s health care priority.

HR1313 Is A Bad Thing, And Not Just For Cancer Survivors

This is going to be a difficult story for me to post, because as my readers know, I do what I can to avoid talking politics and religion on this blog.  I do my best to navigate any advocacy issue without any bias towards left or right, religion or lack of.  But as a survivor of cancer, and a multi-victim of discrimination because of my health history, HR1313 is a topic I need to write about.

HR1313 is a new bill, called the Preserving Employee Wellness Programs Act, being introduced by our government representatives.  And while the name of the bill looks harmless enough, as the expression goes, “don’t judge a book by its cover.”

So let me start at the beginning, to state my qualifications and experience with the topic of this post.

After nearly two years of battling Hodgkin’s Lymphoma (1990), though I was not unhappy with my employer, I was still looking for opportunities to improve my life financially.  This meant investigating new job opportunities.  My stepfather had recommended that with my personality and charisma, I would be perfect to work in the insurance industry.  He was well known in his company and would do what he could to help me get hired.

I met with my stepfather’s boss, who outlined what the hiring process would involve.  There would be studying for licenses, other interviews, the application itself, and a medical exam.  I was confused as to the need for a medical exam, as any of the other jobs I had held previously, never required a physical.  Only school had required these at certain periods of my childhood.  The manager had said there would be things I could do to save time while I studied.  Getting the physical out of the way was one thing that could be done.

So the physical went as expected.  I was in remission from my cancer.  My body, other than being a little overweight yet from treatments, was in good shape.  A couple more weeks went by.  I continued my studies, doing well on all the exams I was taking.  I completed my application, and participated in an interview.  A couple of weeks later, I received a phone call from the manager.

“Hi Paul.  It’s Jim.  Listen, I was on the phone with the district office, discussing your application, and the home office feels that it we need you to be in remission from your cancer a bit longer.”  I asked, “how long is ‘much longer’?”  To which he responded, “well, it’s tough to say, you just finished your treatments recently.  But you can always try again.”I hung up the phone in shock.  I beat cancer, and I was being discriminated against for it.  Was it going to be like this for the rest of my life?  No one giving me a chance?

I took the manager, the district office, and the insurance company before the labor relations board for discrimination.  I was not even suing for money.  I wanted their practice of discrimination to be punished however.   With the help of my therapist, and a lawyer, this insurance company was in for a rude awakening.

In 1990, the American With Disabilities Act was signed.  It was a law created to prevent discrimination in all settings.  For the purpose of this post, I am referring to employment, specifically hiring practices.  The insurance company representatives were going to be some of the first introduced to the new law.  It was now illegal to have an applicant subjected to a physical without the intent being to hire.  In other words, the physical could only be demanded once the other requirements are met, and employment would then pend on passing the health physical.  It was at least a moral victory.

The lawyer for the insurance company then accused me of withdrawing my application so my complaint had no merit.  Of course I did not withdraw.  I know what I heard.  And it was awful.

The ADA is not perfect.  While on paper, it says it will protect people with disabilities from discrimination, but the reality is, if someone wanted to discriminate against you, there would always be a loophole.  Like saying someone changed their mind verbally about future employment.

Over the next many years, I would find myself fighting management repeatedly over challenging my ADA rights.  I would also watch others, not assert theirs.  Sure, they would complain about their treatment, and at times, allow their conditions to get worse, but they always kept their mouths shut.  Worried about retaliation from management.  At what cost?

Then in 2008, the Genetic Information Nondiscrimination Act was signed.  This was a bill that was intended to prevent discrimination based on genetic predispositions.  With technology developing, it should be a good thing that science has been able to find out who might have higher chances of developing a serious illness or physical condition.  But in the hands of an employer or insurance company, genetic testing would become a backdoor loophole to discriminate against employees or clients.  This law at least on paper, is meant to prevent that.

But now comes the Preserving Employee Wellness Programs Act, HR1313.  While it is unclear whether this bill being created is something that will allow employers to demand of its employees and applicants, or whether it will be voluntary, is nothing but a bad thing.  Back in 1990, I volunteered to a doctor, who I was sent to for a physical by the company – not my own personal physician – and volunteered that I just completed treatment for cancer.  Even if this is a voluntary effort, volunteering information to an employer that they have no legal right to know, is setting yourself up to discrimination.  Of course, they cannot tell you that you are not hired because your genes say you are more likely to have a heart attack or develop cancer.  But knowing your genetics in advance of employment or during your employment, gives the employer and opportunity to develop the loophole necessary to deny you, or terminate you.

It is shameful that this effort is under the guise of “enhancing” wellness programs at work, which are a good thing.  But knowing someone’s genetics, is clearly being used to discriminate in either hiring (which the employers will never admit), and also to discriminate employees’ insurance benefits.  Good genetics will get lower insurance rates.  Bad genetics will get higher rates.  DISCRIMINATION!!!  Anyone who has had to fight a serious disease such as cancer, should never have to fight so hard for something they need such as insurance.  Instead, efforts are underway to make it not only more difficult, but financially out of reach.

You want a real good “wellness” program?  Scheduled breaks.  Better pay.  Health insurance that encourages preventative visits.  Less stress in the workplace.  But knowing the genetics of an employee?  That is just a tool for discrimination that an employer should have no right to.

Once you open this door, like toothpaste, once it is out of the tube, you cannot put it back in.

Cancer – Facing Fears Of Relapse

fear3 fear4

The line from Indian Jones that everyone remembers, “Snakes, I hate snakes!”  Always followed up in other IJ movies, “why does it always have to be snakes?”

This morning I was asked, “what are you afraid of?”  The individual was quite shocked at my reply, “nothing.”  Sure, there are things I do not like, there are situations that concern me, but being afraid, fear, is an often paralyzing circumstance.


In the cancer world, and this is just my opinion, I do not think the feeling of fear is as strong at diagnosis, as it becomes post treatment.  Of course, we do not look forward to a diagnosis of cancer, but I think the majority of us faced with this situation will make up our minds, “I am going to get through this.”  We may not be crazy about some of the diagnostic tests that we get put through, but there generally is no fear at work.

Oddly, fear hits cancer patients, and survivors, usually after treatment ends.  And it can be a crippling fear, the fear of relapse, or recurrence.  And this is perfectly normal.  After all, it was one thing to take on the beast once, and beat it.  It is another to worry that it could come back.  And if it came back, knowing what we went through the first time, and to deal with it again, would use stronger methods of treatment that we could not be certain we could tolerate, or worse, not work at all because perhaps our cancer was not curable after all.  This is a legitimate feeling.

So, how do you deal with it?  I could tell you it gets better, just that simple.  And of course you would probably roll your eyes hearing me say that because that simply will not erase your concern.  But I will tell you, it does get better.  I am proof.  I went through the first follow up scan… to the six month mark… to my first anniversary… to number five.  And to be honest, even 25 years out now, the possibility exists that I could still face it again.  But the nerves of that first scan, soon faded months later, and then completely within a couple of years.


I have faced a lot in my 25 year survivor period, and the two years battling cancer.  And I could easily let fear influence my prognosis.  But I do not.  I like the above phrasing of the letters from the word “fear”.  I will use another instance of my life where I actually apply the phrases of “fear” to get through my trials.  And it works no matter what situation I have faced, or will face in the future.

As if cancer were not bad enough, I faced open heart surgery in 2008.  If fear would have any appropriate time or place, this would be one of those instances.  But…

1)  I “faced it.”  I was going to die without the emergency bypass.  Fear had no place in the decision making.  I wanted to live.

2)  I “explored it.”  I checked out my surgeons, options.  I studied what could potentially happen to prepare for the surgery, and for life after the procedure.  I made sure everything was in place for my personal life, should anything happen.

3)  I “accepted it.”  I was either going to get through the surgery, or I was going to die.  It was that simple.  Only two results.  I was going to survive and move on with my life, in which case everything matters, or I would die, and then what exactly could I do about that?  So the idea was simple.  I was going to get through it.

4)  I “responded.”  My surgical team and post care team were the best.  I put all my faith in each and every one to deal with the risks, and especially pain management.  I could control nothing that they were in control of themselves.

I have used this philosophy many times in my life, and not just for illnesses.  And accepting what I must face, instead of being afraid of it, is what gets me through every time.  Even as I approach my sixth decade of existence, there are still things that I have not had to face in my life.  And I will face everything the same way as I have succeeded before.

I currently have friends who are still going through treatments, dealing with relapses, and some who are knocking on that door of the word “remission.”  And these are definitely scary times.  But in time, one day turns to one week.  One week turns to one month.  One month turns into one year.  One year turns into five years.  Five years turns into ten years.  Ten years turns into twenty-five.  And so on.  And each day you face those fears head on, you succeed because you know you have to.  And it does get easier.  I have been there and done that.

Yes, I know you want the treatments to end.  Yes, I know you want to hear the word remission.  Yes, I know you do not want to hear “new disease” or “relapse.”  But the fact is, it can happen.  But what will you do about it?  You will fight it just as hard as you did before.  And you know how to do it, and get through it.  There is no room for fear.  You face it, explore it, accept it, and respond.

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