Let Observation begin with the presumption that most people
who will read this are pursuing success in one field or another. This pursuit may be in a work environment or
in a recreational pursuit, or even an academic field; but almost assuredly you
are seeking success. And it may be surmised from this pursuit that you either
equate the effort to accomplish or the actual success with your ongoing
happiness. But how do you know when you are successful?
In the zero-sum world of near unadulterated capitalism there
is typically only one winner for any given competition. Let it be interjected here, in a tip of the
hat, that there are new trends in business management; working models of
sustainability look to change the goals of businesses from pure shareholder
equity growth via limiting progress measured by profit line comparison to long
term strength of relationships with customers, suppliers and the community in
equal measures. But most people who are
reading this will have developed their sense of success on the old zero-sum,
winner take all approach.
So let the Observation shift to a look at 5 people in the
battle against cancer: The Patient, The Nurse, The Doctor, The Hospital, and
The Pharmaceutical Company. My personal
experience with Insurance Companies leads me to believe that their role in the
cancer puzzle is remarkably neutral, only when we realize we did not have enough
coverage do we find ourselves calling for insurance company or health benefit reform. This complaining comes because we often hold
the extension of life more precious than the life that is lived to the fullest. Once again a topic is touched upon that is
worthy of its own separate discussion; so more on that later.
For this moment let’s look at our 5 people and see how they
define success: The patient would appear to be the simplest but that view is
almost always seen from any point of view but the patient’s. Success is not just beating the disease, but
beating it while remaining intact. To
keep one’s body whole along with maintaining vibrant healthy relationships with
family, friends, and co-workers is no easy task on a day to day basis for those
of us not fighting for our lives against an invisible foe. To accomplish while fighting against millions
of uncooperative over-replicating automatonic cells is virtually
impossible.
It is in attempts to compensate for this inadequacy the
patient will seek either solitude, or to develop the acting skills of a Meryl Streep
or Laurence Olivier. For the cancer
patient success is defined as actually beating the disease or presenting the façade
of not letting the disease beat them? If
they do beat the disease, rarely are they left whole either having lost body
parts, friends, family or all three. If
they manage to fool the world into believing that they are going to be okay
with the ultimate sacrifice, the world showers them with pity and love until
pass away, and the legacy of their fight is perhaps memorialized in obituary or
on a headstone.
The Nurse is the most challenging person to try and define
success. Decision making is limited, so
the consequences for patient outcome are minimized. But as the hands on part of
care giving, the Nurse receives the most input from patients, family, Doctors
and hospital. Much of this is positive
input even if demanding, but the few negative inputs coupled with the realities
of caring for people who are in all likelihood going to die from their disease
takes an immense personal toll. Many
oncology Nurses can only handle 3 years or so before the stresses make it impossible
to continue giving the best care and they become jaded and in need of either
counseling, medication or both. The sure
cure to this situation is of course to move onto another field, but some are so
touched by the strength and courage of their patients that they commit their
lives to this field.
Success for the oncology Nurse may be as simple as being to
go home each night and getting a good night sleep before getting up the next
day, returning to work and greeting the new day with a smile. Success can be defined as perseverance of a
compassionate heart in light of all the tears and pressures to address all the
administrative crap that comes with the job.
Success for the Hospital, a corporate person, is defined as
keeping the doors open while seeking to gain the largest market share of
patients. To accomplish this goal it
must balance a quantity of patients many of whom are un- or underinsured
against maintain a quality that allows them to keep accreditation, recruit a
working supply of adjunct staff and nurses, while keeping the Doctors as happy
as possible.
Much of this is done on the financial backs of those
patients who have adequate insurance coverage.
Adequate is a subjective term here, subjective to the Hospital’s
perspective. Over charging for
procedures, services and supplies is moderated by Insurance company standards
of ‘Reasonable and Customary’ charges.
Such modifications by Insurance companies still compensate typically in
excess of 200% of actual costs, indicating that a 200% profit on all insured
patients should offset the unrecovered costs of the un- or underinsured. Consider the most expensive and expert
building contractors only charge 20% for overhead and profit.
The costs absorbed by caring for the un- or underinsured
should be covered; and yet the pursuit of the co-pays, deductible and
co-insurance of the insured is a tenacious job worthy of the meanest pit
bull. To all the pit bull owners of the
world, I am sorry for the comparison, your dogs are worthy of much better
company. It is these incidental fees that often cripple the financial health of
the patient. In Evan’s case, the main
hospital billed over $475,000 to our insurance company, the insurance company paid
almost $300,000 of these fees, and we were left to pay over $28,000 in other
fees. Had we not had insurance, the
expenses would have been written off or upon legal pursuit, been wiped out in a
bankruptcy proceeding. All this after
the Hospital had already received a king’s ransom.
If this were any other business, a poor outcome would have
resulted in non-payment, price adjustment or refund, but Hospitals success is
like that of a professional baseball player.
If they get it right 3 out of 10 times they are considered good, 4 out
of 10 they are elite.
As complex as the success for a Hospital might be, success
for the Pharmaceutical Company is a lot simpler proposition. Make enough money by selling those items that
no one else can produce while keeping the R&D moving forward and keeping
regulators at a safe distance. For the
last 18 months of treatment at our local hospital Evan received an injectable
medicine called Temsiorlimus it was listed at $5,000 on the hospital bill, was
being administered ‘off label’, given once per week and required Outpatient
Clinic Administration.
Temsirolimus is an mTOR inhibitor. mTOR is the acronym for
mammalian target of Rapamycin. Some time
after the completion of the Human Genome Project, a number of scientists looked
at the effects of certain previously established medicines upon cellular
functions. Rapamycin was one such drug,
and it interacted in a manner that restricted the amount of proteins any given
cell might produce in the body. Because
proteins are the building blocks of cells, Rapamycin was considered a possible
cancer fighter.
Once a drug is discovered, a patent is filed with an
expiration date of 14 years. So from
discovery to the end of the patent is the maximum period of profit, because
after the patent has expired, then anyone can manufacture the drug at cost and sell
for a modest profit. The discovering
agency has a window of opportunity to make enough money to offset discovery
costs and make as large a profit as possible before generic drug makers enter
the market and sell the same medicine at cost plus a reasonable profit.
Discovery costs are broken into two categories: Efficacy
studies and Safety studies which are supposed to run side by side and be
overseen by the FDA. Rapamycin as an
already approved drug with an expired patent would never be the researched into
cancer treatment because the discovery costs could never be recovered before
generic manufacturers undercut the price.
So Wyeth purchased the drug and set about developing an insignificant
change to the chemistry of the medicine so as to gain a new patent. The drug Serolimus was developed without
intent to take to market, but it establish a patent protection window. In the midst of patent protection Wyeth
reconfigured Serolimus to create Temsirolimus and sought to take the drug to
market for a rare cancer that would not get the attention of the generic
manufacturers. Upon approval in that
field Wyeth began the effort for widespread use of the drug in other oncologic
fields by promoting study centers and paying grants to doctors to research the
newest medicine with the longest patent protection.
US consumers bear the greatest brunt of cost recovery due to
the high returns on health insurance for those that are covered. As a result, the Temsirolimus that was sold
at $5,000/dose before hospital delivery costs, is available through a Canadian
pharmacy for $200/dose, and Rapamycin a drug that does the same thing but doesn’t
require any hospital time $53/dose. For
my money, Pharmaceutical Company success is judged as being to milk the US American
public for the most money for the longest time.
Enter the final person for observation today, the Doctor. I respect the frontline clinical physician as
one of the most underappreciated and least respected occupations in the world;
however the greater the degree of specialization and sophistication the less
enamored of them I become. My personal
experience has led me to see the best surgeons as the most arrogant which is to
a certain degree necessary for the person who is willing to cut into a body to
make it better. And given my own hubris,
I have found myself at odds with such arrogance.
But the Pharmaceutical Oncologist is a beast of another color. They accumulated enough knowledge in such an odious
field to be considered the best clinicians in the cancer arena; but as they
wear the uniform of clinical physician they do so as they walk around in the masquerade
guise. Their real identity is that of the
Experimental Scientist. Except instead
of cell lines, rats or mice, the subjects of their experiments are human
beings. And this is where the ethics
gets fuzzy until you look at the money.
As compromised as the Hippocratic Oath has become, at the
core is the fundamental motto that we assume all physicians hold dear, “First,
do no harm.” And as we all desire the best care when faced with unique or life
threatening diagnosis we flock to teaching hospitals and seek out the ‘best’
doctors in the field. When needing a
cardiologist or cardiac surgeon, there is little to be discussed as the
workings of the heart are well known and understood, it is the skill of the
Doctor in interpreting the individual cases that sets them apart from their
peers.
But what sets an Oncologist apart from their peers. As much as we advance the knowledge of cancer
as a field, we still know so little about the individual specifics, and more
research is done on how we respond in generalities to various protocols of
processes rather than to curing the individual.
The emphasis is on the disease process rather than the individual. So the best Oncologists are not necessarily
those who have had the greatest success, but the one’s who have been published
the most in the most respected peer reviewed journals.
As Doctors are evaluated on how many patients cross the threshold
of the hospital, the Oncologist who develops the highest profile by having the
most/best articles published getting the notice of the referring physicians is
critical to status. The clinical
physician disguise is maintained throughout the course of treatment, but once a
patient enters Stage IV they are immediately evaluated for what locally
available study is open to them.
Locally available means that a pharmaceutical company is
willing to fund the research, the hospital still gets its cut from insurance,
doctor gets to double dip as they are also paid out of the grant as well as
regular fees and gets to do the research that may lead to publication, and the
patient is given ‘hope’ while having been transformed from patient to guinea
pig.
So unable to ask this question during treatment or upon
revelation; Why was Evan denied Radiation Therapy? I can now answer: He was denied because that would
have led to less income and prestige for the doctor/scientist. Triaged with a black tag upon entering one
person’s Stage IV, he would be of no further value to the pharmaceutical
oncologist if his tissues could not be used for experimental treatments.
Today is 100 days since Evan suffocated to death because of
the among other reasons, the hubris of doctors, the unadulterated profit motive
of pharmaceutical companies, and a lack of unencumbered ethical oversight by a
disinterested third party board at a hospital.
When I began to pursue admission to medical school to be a
better advocate for Evan, I was naïve but motivated. Now that I have seen the system and
recognized its need to be reformed, I find myself stuck in a place lacking
motivation.
