People are Dying in the U.S. because they can’t Afford their Insulin
Type 1 Diabetics (Type 1 D), whom acquire the disease as
children or young adults are dying because they can’t afford the price of
insulin in the United States. In 1972, three years after my brother, Russell
was diagnosed with Type 1 D, a vial of insulin cost $9. Today, that same
quantity is $275, nearly triple what it was in 2010. For an insulin dependent
diabetic, whom must take one to two vials a day for survival, this can be a
$50 per day expense. Suffice to say, most people cannot afford to pay that
much for medicine, especially lacking insurance. And if someone has a chronic
condition like diabetes, it may be more difficult to obtain and keep
employment, especially a job with good medical insurance. How does someone buy
their essential insulin without the means, in the U.S. they go to GoFundMe.com
and ask for help. But even with the
relative success of this social media phenomena, many are still unable to pay
their bills.
One person in a family with diabetes impacts the
whole family.
My nephew, Jeremy, was diagnosed with Type 1 D before age 25,
works fulltime, has a mortgage, wife and child and he struggles to pay for his
insulin and supplies. Though he has insurance, his $4,000 deductible means his
insurance company never pays for his diabetic supplies or insulin. This means
he has to use less than optimal insulin types and glucometers, because of cost,
not efficacy. A month of Humalog, which is manufactured by U.S. pharmaceutical
giant, Eli Lilly, costs him $1,088 per month. If he were to use Novo Nordisk’s
brand, Novolog it would run $800 to $1,000. Novo Nordisk does sell a generic
insulin, which runs $25 for a supply, but it is not as fast acting as the newer
formulas. In addition to the insulin costs,
the meter and sensors for checking blood sugar run $300 to $400 per month for
the best versions and about $60 per month if you can make do with the older
ones. In addition to these challenges, he obtains samples when he can and
micromanages his diabetes as best he can through inconsistent types of insulin
and diet.
For those whom have been insulin dependent for a long time,
it can take a week to ten days to die without it.
Symptoms of ketoacidosis would include;
extreme thirst and frequent urination, followed by abdominal pain, nausea and
vomiting. A severe headache would ensue from brain swelling. These are signs
your body is starved for essential hormones and is shutting down, which would
be followed by diabetic coma.
At
this point, death could occur at any time, but even if an emergency
intervention occurs to prolong life, lasting damage to organs has ravaged the
body, which may include kidneys, heart, and brain function.
My brother, Russell, was diagnosed with Type 1 Diabetes by
age three and in fact, he experienced several symptoms of ketoacidosis. He did live
for 42 years, but he experienced brittle diabetic symptoms, probably a result
of the delay in his initial diagnosis. But in the 1970’s they did not have the
advanced testing available through the Thymus or T cell tests to assess if a
child is more likely to become diabetic.
At
the time, he was one of six children and had been exposed to mumps and measles
from older siblings, again because the time for many immunizations was in
primary school and not earlier in childhood then.
By the time Russell was in his twenties, he was in renal
failure and became covered under Social Security and Medicare once he was on
dialysis. Prior to that, he worked as an electrician, in a state, which is
largely nonunion, so I have no idea if he had continuous medical insurance. I
suspect he didn’t and my mother or other family members probably paid for his
insulin. I do remember my mother fretting about buying his insulin even at $9 a
vial when he was a child. As a farm family we rarely had medical insurance and
then only if my father had an outside job with benefits.
Here are some of
their vitals:
Shane Patrick Boyle-Died $50 shy of what he needed to buy
insulin-despite his Go Fund Me campaign.
Alec Raeshawn Smith-Died at 26, after he aged out of his
parent’s insurance plan, because he couldn’t afford insulin.
Diabetes is the 7
th leading cause of death in the
United States and is thought to be under reported,
for those not yet diagnosed and based on death certificates which do not have
to distinguish the disease which caused death, just the ultimate means of
death. For example, when Russell died from ventilator acquired pneumonia due to
a kidney transplant, his death certificate probably just said pneumonia, not
diabetes. But the reason he was getting the transplant was because he was
diabetic. Diabetics do not get the sympathy that cancer patients get, as the
public blames diabetics for getting the disease. My three-year-old little
brother did not exhibit any character failing which thus caused his diabetes.
America needs to examine why we look the other way for some patients with
chronic diseases and will do anything for others with more exotic conditions.
Rather the nation needs to take a personal
inventory on our poor health policy and management of resources which allow
adults and children to regularly die from this treatable disease.
Seven million people need insulin to survive in the U.S. and
three million of those are Type 1 Diabetics. How many people must die because
they can’t afford their medication? Why is this an acceptable phenomenon in one
of the richest countries in the world, which just gave corporations (pharmaceutical
firms) and the top 2% of the wealthiest a huge tax break. In fact, the top 1%
based on income will gain 20% from the Republican Tax cuts.
Type 1 Diabetes is an autoimmune disease which is managed
through insulin and is not currently cure-able except through successful
pancreas transplants. Benaroya Research Institute, a global health research
nonprofit in Seattle, is working to change that. Current research shows genetic
modification of T cells is likely to be the future cure for diabetics.
In
other words, the cells that cause the pancreas to quit processing glucose or
bodily sugar, will be modified to prevent diabetes from occurring.
Why Is Insulin So Expensive in the U.S.
A cabal of three global pharmaceutical firms control the
world insulin market, with Novo Nordisk, a Danish company representing 41% of
the world’s share of insulin products. The information below was drawn from a
105-page report published by a global healthcare nonprofit group.
This
table shows the top three suppliers.
Novo Nordisk, Denmark
|
Sanofi, France
|
Eli Lilly, United States
|
41% global market share
|
32% global market share
|
20% global market share
|
Products-NovoLog, NovoRapid, NovoMix, Actrapid, Insulatard
|
Products-Apidra, Insuman, Lantis
|
Products- Humalog, Humilin
|
Price increases in the USA were 8% in 2017
and 240% over the last 10 years |
Lantis has increased prices by 240% over the last 10 years, old price
$88.20, current price $307.20 |
8% price increases in 2017 alone ,
240% over the last 10 years, 800 to 1,000% since development |
Novalog represented 23% of all diabetic market share
profits (3.3 billion) in 2015, driven largely by access to U.S. market (Pharmaceutical
Technology.com, 2016)
|
In 2015 Lantus was the world’s top selling insulin and
generated 17% of all profits for Sanofi (6.86 billion) |
Humalog generated 2.84 billion in profits in 2015
|
What You Can Do
First, you should be contacting your state legislature and
Congress about the price gouging big pharma is exacting from our nation, which
is resulting in wrongful deaths. These people are not dying because of
character flaws, they are dying for lack of $50 or $500. There are currently 11
patients suing the three largest insulin suppliers for price fixing in the U.S.
and maybe that is what it will take as Congress seems to be unwilling to do a
thing. Additionally, several states, including Washington, are suing the pharmaceutical
companies for price fixing adversely impacting state Medicaid plans. Meanwhile,
the profits of the three major drug companies who supply insulin to the world
increased exponentially. (Committee, 2011) Here are some policy changes we can make which would create
affordable medications again:
- Reauthorize production of older insulin formulas, to keep
an affordable supply available. A 2011 World Health Organization study of outcomes
tied to the newer analog insulin versus the older human insulin formulas, showed no evidence of a clinically significant
outcome in morbidity or mortality. (Committee, 2011)
- Require Pharmaceutical companies to show statistical
evidence of a population health benefit for new drugs and not just a scientific
benefit.
- Ban all direct to consumer advertising for drugs in the
United States-this isn’t about science but about developing market share.
- Stop allowing patent extensions for specious modifications which
are minor and profit not patient motivated.
- Look at differences in regulatory access to markets, such as
Finland and Estonia, which allow many more registered insulin producers than
the U.S. Better access to affordable insulin will prevent health decline and
reduce deaths from diabetes. The U.S. should be vigorously supporting this ethos
as opposed to artificially supporting exorbitant profits for drug companies.
- Reform U.S. healthcare by allowing the Centers for Medicare and Medicaid to negotiate with drug companies on price, just like all of the other countries do. This would have a price lowering impact across the private sector too.
- Continue to fund research into curing diabetes through the National Institutes of Health, not cutting the budget, as in the current administration.
Act Out
I am cycling 900 miles from Bremerton, Washington to Napa,
California to highlight the need for a cure for diabetes as that is the only
way we are going to get out of the clutches of big pharma. All of the money I
raise goes to Benaroya Research Institute’s diabetes work, through the Virginia
Mason Foundation. Because diabetes is a terrible disease, I wanted to do some
suffering on my journey as well, and am biking the distance in eight days,
which includes two days of 150 miles each. Throughout this journey I will
reflect on my brother’s and nephew’s lives and how much we need to change our
healthcare system. I will be speaking to the press and general public at each
stop along the way. Please give to the inaugural Russell Ride so that something
positive can come from the early deaths of these good people.
And this is the healthpolicymaven signing off encouraging
you NOT to sign blank release forms when you are admitted to a hospital. DO
specify that for which you consent and that for which you do not approve. If at all
possible, bring an advocate to your admission. Do not go quietly into the night
and make your concerns known, not just in your medical treatment facility, but
with your local, state, and national representatives. All lives matter, not
just the uber rich, regardless of what comes out of Washington these days.
Roberta Winter is a freelance journalist who has published
this independent healthcare column for 11 years, without obligation to
pharmaceutical, hospital, clinic, or medical supply companies. Please feel free
to share this widely on social media.
Works Cited
Committee, W. H. (2011). World Health Organisation.
Retrieved May 17, 2018, from
http://haiweb.org/wp-content/uploads/2016/04/ACCISS_Insulin-Market-Profile_FINAL.pdf
Pharmaceutical Technology.com. (2016, March 29). The
World's Top Selling Diabetes Drugs. Pharmaceutical Technology.com. Retrieved
May 17, 2018, from
https://www.pharmaceutical-technology.com/features/featurethe-worlds-top-selling-diabetes-drugs-4852441/
