Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “October, 2014”

If You Are Sick… It Sucks To Be You.


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The headline in the New York Times for July 8, 2014 read:

“Rapid Price Increases for Some Generic Drugs Catch Users by Surprise”

The picture as shown above from that same article showed a patient meeting with her doctor.  She needs a drug called “Digoxin” for her heart.  It is the only pill that works for her.  And she is not alone.  There are hundreds of millions of people who need medicine to maintain their quality of life.  With Big Pharm taking full advantage of drugs they produce still on patent, basically charging whatever they want, without insurance, you simply cannot afford to be healthy anymore.

Generic drug availability was supposed to take care of that.  Obviously, with companies taking advantage of expired patents, drastically cheaper and affordable alternatives would finally offer patients a difference between affording life or choosing death.  But as new drugs come out to the market, once again on patent, two things happen.  Television commercials begin to appear telling patients the best new drug to do better than what a patient was already taking is available and needs to be discussed with their doctor.  This is followed by a lowered demand for the generic drug that many people rely on.  Then of course you factor in the costs to pharmacies, with surely the small “mom and pop” pharmacies not able to compete at all with the super chain pharmacies.  Even with insurance, you may no longer be able to take the drugs that have worked for you, simply because it is not convenient for Big Pharm.

Even though I am lucky to have insurance that includes prescriptions, my insurance still tries to dictate to me whether I will take the generic or the original name brand drug.  As a rule, I have always taken the name brand because a) I have always believed the name brand to be better than the generic, and b) I had the insurance to cover the cost.  Over the years however, my prescription plan tiered to make name brand more expensive to me, so of course eventually I adjusted to taking the cheaper generic drugs.

But as pointed out by potential presidential hopeful Bernie Sanders, Independent Senator from the state of Vermont, generic prices are soaring out of control.  If it is not health care costs going out of control for profit at the expense of a human life, health insurance also contributed to this skyrocketing cost, but as more patients turned away from the expensive alternatives to save and maintain their lives to cheaper costing generic drugs, Big Pharm did the only thing it could to solve its need for greed… jacking up generic costs.

This is disgusting for a couple of reasons.  Generics finally offered an alternative for people to take care of their health who otherwise could not.   But for those who are fortunate enough to have insurance that includes prescriptions, now those insurance companies are beginning to dictate what drugs they will cover, even though they are generic.  And the reaction, as should be expected, the less a drug is being prescribed, the more the price will go up as well, even if it is generic.  And that is what is happening.

Okay, so I addressed the issue skyrocketing generic drug prices.  People without any insurance covering generic prescriptions will no longer be able to afford medicines.  Those with insurance that provides coverage should be okay for now.  But what about the people in the middle?  What about those on Medicare and fixed income?  For a family I know, this has become a real issue.  They are covered under Medicare and also have AARP insurance.  But because of the level of retirement income received, their prescription coverage has maxed out, and we are only in the middle of October.  This means that the elderly couple cannot afford their medicines for the next two and a half months, medicines they need to keep them alive.  While some may argue that if they income level is too high for the benefits, then that is the couple’s problem.  No, it is not.  With the cost of living going up every year, rent, fuel, gas, food, GENERIC PRESCRIPTION DRUGS, but their fixed income remains the same, year after year, where exactly is their income level too high?  Their income stays the same while all of their expenses continue to rise.

I wish I had an answer to this dilemma, which is why I turn to you, the readers of “Paul’s Heart.”   I know this family is not the only one going through this issue.  But I am at a loss for anymore solutions to offer them, as I have tried even using common sense to help solve their needs, and nothing has helped.

So the question is this…

“For those who must deal with this “donut hole” for prescription medicine, how do you afford your medicine, or are you simply rolling the dice until the next year comes around?”

I need your help.  This family needs your help.  They are elderly, with one spouse dealing with both cancer and dementia combined, and at least for the next two and a half months cannot afford the medicine needed to deal with these two major health ailments, along with the other medicines taken.  Comments shared on this blog are kept confidential unless you specify otherwise.  And keep this in mind, your replies will not only help this family, but many others who read “Paul’s Heart.”

The Price Of The Cure


Jerry Garcia

There is the obvious.  Cancer, left untreated will kill you.  Not maybe, it will kill you.  And if you have every been by the bedside of someone dying from the late stages of cancer, the quality of life is painful and upsetting for the patient, loved ones, and caregivers.

There are treatments available for many cancers, many resulting in full-lifetime remissions, and several at the very least, the ability to manage the cancer, in maintenance fashion to keep the cancer from worsening.  And in some cases, the treatments may be ineffective at all.  And while the immediate side effects of any treatment –  surgery, chemo, radiation, immunotherapy, and others – may be unpleasant, the stereotypes do not lie, often times those side effects can also be effectively managed to lessen their severity.

But what happens when the treatment itself is worse than the cancer?  How do you choose between something that is meant to cure you of a fatal disease, but has the potential to make things bad or worse for you in the long run?  What do you decide when faced with the possibility that the treatment could actually make things worse?

After the initial shock of a diagnosis wears off, the last paragraph is the most dominant in concerns.  Untreated… dead.  Treated… remission…other bad things happen because of the treatment.  Treated… dead.

No one wants to die.  And while the initial thought might just be, “oh my God, I’ve just been diagnosed with cancer.  I’m going to die.”, that moment is often quickly going to change to, “I want to beat this.  I can beat this.”

Medicine has come a long way in treating all the various forms of cancer.  But it still has a long way to go.  Nearly every adult has had to sign a waiver that states the risks with any kind of procedure.  And though these waivers are fairly general in nature, all too often, important details are left out.  Minor side effects often do not need to be publicized if the occurrences are not frequent enough.  That does not mean that they do not exist, just that it is not required to be discussed.

Imagine, as I was perusing through my medical records recently from when I was treated for my Hodgkin’s Lymphoma back in 1989-1990.  And I can actually remember everything because I was told exactly what was written.  The exposure to the amount of radiation risked pericarditis, a swelling of the lining around the heart.  Potential risks from my chemo were a secondary cancer, such as leukemia.  If you have followed “Paul’s Heart” or read back posts, you know the doctors and medicine “missed it by that much” (as Maxwell Smart would say).

The radiation I was exposed to was 4 times the LIFETIME MAXIMUM of radiation (much less is used today, thank you very much).  And one of the drugs used in my chemo cocktail was a derivative of a chemical used by Sadaam Hussein to commit genocide on his people in Iraq and Kuwait.  Yet, the possible risks were just casually mentioned.  No need to worry.  The cure will not be as bad as the cancer.  I now have had open heart surgery, other heart valve issues, carotid issues, restrictive lung disease, radiation fibrosis (muscle atrophy), spinal issues, immunological issues, and a whole host of others.  But no pericarditis.  No leukemia.

But then there is the extreme as I mentioned in the story about Michael (“Meet Michael” published in October).  The one drug of his chemo cocktail had an immediate effect on his heart, but no one thought to check, and he died.  My father had gone through surgery to remove his “stage 1 lung cancer”, went through chemo as preventative, and against my recommendation, went through radiation therapy additionally as prevention, only to seemingly have his cancer turn super aggressive to stage 4, untreatable, and die.

I often get asked, “would I go through it again?”  Back in 1990, I said emphatically , “NO!”.  If it ever came back, would I ever go through treatments again, and I would say “no.”  But after the adoption of my daughters, everything changed.  I wanted to live for them.  But I am saddened by all that they have had to witness with my health since, and having watched their grandfather die from lung cancer.  If you asked Michael’s family if they would allow him to choose treatment again, their answer most likely may be different.  I know for a fact, my father would have given anything to not have gone through the radiation.

This post is not to be “anti treatment” at all.  It is rather meant to be an illustration of the agonizing choices faced by patients and families.  There are over 12 million cancer survivors and not all have issues like I have, and in my lifetime, I expect that number to double.  Which means we are also not solving the issue of cancer prevention, let alone, finding a safer cure any time soon.  But it is one of the hardest decisions a person will have to ever make.  It is about the quality of life we want to spend the rest of our lives.

I Miss My Dad


I am sitting at my laptop, as I do often every night.  As I do, I am always listening to music.  A “supergroup” called Mike & The Mechanics featuring Paul Karrack and Mike Rutherford of Genesis recorded an awesome song which addressed a son’s unresolved issues before the loss of his father.  I am fortunate that I was able to have closure  with so many things with my father before he passed.  But the song reminded me of what could have happened had my dad and I not taken the opportunity.

Here are the lyrics to “The Living Years” recorded by Mike & The Mechanics.  Dad, I miss you.

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“The Living Years”
Every generation
Blames the one before
And all of their frustrations
Come beating on your door

I know that I’m a prisoner
To all my Father held so dear
I know that I’m a hostage
To all his hopes and fears
I just wish I could have told him in the living years

Crumpled bits of paper
Filled with imperfect thought
Stilted conversations
I’m afraid that’s all we’ve got

You say you just don’t see it
He says it’s perfect sense
You just can’t get agreement
In this present tense
We all talk a different language
Talking in defense

Say it loud, say it clear
You can listen as well as you hear
It’s too late when we die
To admit we don’t see eye to eye

So we open up a quarrel
Between the present and the past
We only sacrifice the future
It’s the bitterness that lasts

So don’t yield to the fortunes
You sometimes see as fate
It may have a new perspective
On a different date
And if you don’t give up, and don’t give in
You may just be O.K.

Say it loud, say it clear
You can listen as well as you hear
It’s too late when we die
To admit we don’t see eye to eye

I wasn’t there that morning
When my Father passed away
I didn’t get to tell him
All the things I had to say

I think I caught his spirit
Later that same year
I’m sure I heard his echo
In my baby’s new born tears
I just wish I could have told him in the living years

Say it loud, say it clear
You can listen as well as you hear
It’s too late when we die
To admit we don’t see eye to eye

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