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Thursday, November 22, 2018

Changes Undermining the Affordable Care Act Under the Trump Administration

Since the Republicans took control of the federal legislative agenda in 2016, they have been hell bent on getting rid of the Patient Protection and Affordable Care Act (ACA), known as Obamacare. This 2010 landmark legislation, still covers nearly 12 million enrollees and their families through private insurance plans and was REVENUE NEUTRAL through 2016. Annual open enrollment for Obamacare runs until December 15th and is accessible through government run insurance exchanges.
Briefly here are the changes the Trump Administration has made to the Affordable Care Act:
  1. Removed the individual penalty for lack of medical insurance, which only applied to people who didn’t qualify for any of the existing exemptions, such as; religious objection, insurance falls outside the range of affordability, hardship provision, etc.[1] The Congressional Budget Office has estimated this will cut 338 billion from funding for the Affordable Care Act by 2019.[2]
  2. Removed the 2.3% tax from the lucrative medical device industry, which provided funding for the Affordable Care Act; cutting about 3 billion a year from the government subsidized insurance program
  3. Cut the open enrollment period in half from twelve weeks to six, which is the period when individuals can elect or change insurance plans without a change in family status
  4. Reducing advertising and even web site information on the Affordable Care Act, which has made it more difficult for people to obtain information and enroll. 
Affordable Care Act Affects Most Insurance Plans
The Affordable Care Act impacts nearly all medical insurance plans in the United States through a variety of provisions about nondiscrimination based on health, linking healthcare quality to reimbursements, and standardization of coverage. This table shows where people obtain their insurance in the United States.

Employer Plans
Insurance Exchanges
Population Covered
Slightly more than half of all U.S. businesses offer medical insurance to their workers (56%).[3] But the rate of employees who obtain medical insurance through work was less than 50% of the population in 2016 (49%). The rate of employer coverage also depends on where you live.  Private employers receive 250 million in tax subsidies for offering medical insurance to their workforce.[4]
This map from the Kaiser Family Foundation State Health Facts site shows the percentage of employers which provide medical insurance for their employees across the United States.

Though the Trump Administration has cut funding for the promotion and support of the ACA in 2018 there were nearly as many participants as in previous years. People like the access to an array of insurance plans which are subsidized by government tax credits and enrollment has remained steady over the years. Further, many of those covered under the ACA lacked access to healthcare before 2010, because they work for employers who do not provide health insurance, are self-employed, disabled, or have a pre-existing condition.
Next Up on the Trump ACA Attack
The Affordable Care Act mandates that insurance companies may not discriminate or deny coverage to persons with pre-existing conditions. The Trump Administration wants to reduce this protection by allowing insurance companies to circumvent the ACA requirement by offering contracts not subject to the ACA protections. These types of contracts already exist and take the form of travel insurance policies or special risk contracts. Student insurance is another example, but since the ACA allows youth to remain on their parents medical plan until age 26, those have declined in popularity. Also, many students are enrolled on Medicaid plans while they complete their education. Foreign students must obtain private medical insurance, which is offered through their universities. Make no mistake about it, offering more restrictive but cheaper insurance contracts hearkens back to the old insurance offerings including; life time limits on benefits, exclusions for certain conditions, conditional insurability, and other fine print.
The Trump Administration also sought to eliminate the risk sharing funding that insurance companies received, as a part of the ACA, to offset higher costs from accepting all people, regardless of health, and not being able to charge more for risk in the insurance exchanges. However, for the moment this effort has been defeated due to lack of Congressional support, which will erode further when the Democrats take back the House of Representatives in January. 
And this is the healthpolicymaven wishing you a content Thanksgiving and encouraging you not to sign blanket release forms for medical procedures, do stipulate that for which you consent and that for which you decline. Also, be careful about the information you share with insurance companies, which will be used to figure out what to charge and how to market to consumers, not necessarily to improve your health.
 Roberta Winter is a freelance writer and health policy analyst and all opinions expressed here are her own, not subject to corporate funding or dictates. She is the author of a guidebook to the U.S. healthcare system,

Wednesday, October 24, 2018

Trump Administration Shoots Foot While In Mouth

How the Trump Administration Shot Itself In the Foot
According to national demographics, white voters vote at a higher rate than other groups, but the proportion of white votes is diminishing based on the age of dinosaurs like evangelical minister, Pat Roberts. I am still shaking my head in disbelief that this nonagenarian preacher was trotted out as some foreign policy expert on Fox News to make excuses for the Saudi murder of journalist and House of Saud critic, Jamal Khashoggi. Evangelical Christians, who are apparently behind the Kavanaugh appointment and many other Trump era efforts, make up only 25.4% of the nation or about half of all protestants and yet are dictating futures to us all. The second largest demographic group for religion are those who are unaffiliated, agnostic, or atheist representing 29.9% of the nation. Those reporting Catholic as their religion accounted for 23%. The fastest growing religion in the US is Islam.
A quick analysis reveals that the diminishing white Christian majority will not be the majority for much longer. Experts predict that by 2045 the US Caucasian or white population will be the minority, and it could happen before then. I for one, expect to be alive at that point, and welcome the diversity. The religious right-wing minority dictates to the Trump Administration and represent a last gasp to reverse this inevitability. Unfortunately, rising temperatures and sea levels are also edging toward the 2 degrees mark in global warming. I can just hear the eschatologically inclined orgasmicly describing their day of revelation. Unfortunately for the more sentient, this is no comfort for the rest of the nation or the planet for that matter.
Short of putting a finger in the proverbial dike, what can the rest of us do to stop the march to the end of environmental live-ability? It comes down to the math, the Republicans cannot afford to lose the white suburban female vote and hold on to their majority. More than twice as many voters with university degrees voted for Clinton than Trump, both male and female representing 30% of the electorate. Among whites with less than a four-year-degree, 64% voted for Trump, representing 44% of all voters. However, the proportion of those women who voted for Trump was a lot smaller than male voters, with 54% voting for Clinton, based on Pew Research.  
 Thanks to Orin Hatch, Lindsey Graham, and President Trump’s performance before and after the Kavanaugh/Dr. Ford hearing, they may have already lost those votes. Women, no matter how conservative, do not consider sexual assault a laughing matter, taunting the victim of a sexual assault is considered an offense of the highest order, and calling women dogs and other animal euphemisms doesn’t play well either. I think its clear this charmless Republican bunch has already shot itself in one of their club feet. Expecting the rest of us to just “lay back and enjoy it” is asking a bit much. We’ll see how it blows up on November 6th.

Sunday, September 16, 2018

Curing Type 1 Diabetes

Type 1 Diabetes is an autoimmune disease where the pancreas cease producing insulin, which is essential for the body to process hormones for regulating bodily fuel or sugar. Without insulin Type 1 Diabetics will die. At present there is no cure for diabetes, but the administration of insulin allows most diabetics to function normally. However, the disease is fraught with all kinds of comorbidities or side affects such as failing vision, circulatory problems, nerve damage, and increased risk of infections frequently leading to amputations. Diabetics often end up on kidney dialysis, which reduces life expectancy and increases the risk of infections even more. According to the Centers for Disease Control and Prevention (CDC) 50% of patients with chronic kidney disease are diabetic.

Approaches to Curing Diabetes
Scientific studies for potential cures for Type 1-Diabetes include:
  1.  Cellular manipulation by removing the attacking mutation to restore normal pancreatic function
  2. Possible vaccines to prevent diabetes
  3. Increased public health surveillance to screen for those at risk of diabetes before they lose their pancreatic function
 All approaches are focused on preventing damage and intervening before diabetes has ravaged the pancreas. Once a person ceases to create insulin the only way to change that is through a transplant, which must come from a deceased donor, as a pancreas is an essential organ.

Current Research to Detect Those at Higher Risk for Diabetes
The T-1 study through Benaroya Research Institute examines tissue samples from people with increased risk of diabetes, which is based on a screen for the presence of islet autoantiboides and the genetic risk for diabetes. Through the application of scientific methods Dr. Marika Bogdani, MD, PhD and her research team at BRI have identified cellular behaviors indicating which individual human samples likely represent early and advanced stages of damage in insulin making tissue inside the pancreas. Her team is researching this cellular behavior with the goal of blocking the agent which damages the pancreas in high-risk individuals. Dr. Bogdani's research shows that people with Type 1 Diabetes have a modified islet cell which produces more Hvaluronan (HA). Her research recently showed these cells are modified earlier before the onset of diabetes in individuals whom have these hostile islet autoantibodies. The very presence of these antibodies is an indication of cellar damage for insulin producing cells. In scientific terms, possessing two or more of these antibodies and the presence of the observed genotype is an indication of increased risk for developing Type 1 Diabetes. There are stages of diabetes before someone requires insulin and the first stage of the disease is the presence of these antibodies. The second stage is called dysglycemia and the third stage is insulin dependency.

Next Steps in Research and Clinical Application
Dr. Bogdani's group is now studying how the timing of this cellular modification impacts insulin cell function and survival, which will illuminate how to effectively minimize pancreatic damage. Current study of islet cells will also reveal which cells, such as endocrine or mesenchymal, are creating the HA growth and what causes the cells to make HA. This will lead to further refinements in potential clinical interventions.  

Current Clinical Applications at the Patient Level
Scientifically there is enough information to be able assess individual risk for diabetes through blood samples. The increased presence of HA in the islet cells is an indication of Type 1 Diabetes at a very early stage and the Trialnet study screens for these antibodies. For more information on participating in the Trialnet study go to Benaroya Research Institute’s site:

Next Steps in A Public Health Intervention
 Primary healthcare should include diabetic screening tests, not just for adults, but for children as well, as Type 1-Diabetes primarily strikes children and young adults. Screenings could be done by individual clinicians during the annual wellness exams.
 A more comprehensive approach would be to screen all school-age children. Since many diabetics do not realize they have the disease until quite late in its gestation, this would provide greater population surveillance of this costly disease. The earlier a person is screened for diabetes the less damage the antibodies can cause to pancreatic function. It is possible to intervene while an individual still has pancreatic function. Earlier diagnosis in disease progression is best.

The author rode from Washington State to Napa, California in eight days, to raise awareness about the plight of diabetics, and raised $5,000 for the Benaroya Research Institute, to fund medical research to cure Type 1 Diabetes. She is the author of a guidebook to the U.S. healthcare system, which was published by Rowman and Littlefield in 2013.
This column has been continuously published since November 2007, the year her brother, Russell died from complications of Type 1 Diabetes.
This is the healthpolicymaven signing off, encouraging you not to sign blanket releases, but do specify that for which you consent and that for which you do not before you undergo a medical procedure.

Friday, August 3, 2018

Your Health and the Environment Trampled by Trump

Scientists knew about the dangers of global warming in 1957,[1] the year I was born, and in 1970 the Environmental Protection Agency was created under the Nixon Administration.[2] After 40 years of protections and environmental cleanup of super fund pollution sites, the Trump Administration wants to roll the clock back to the pre-Nixon era of toxic dumping, energy inefficiencies, and blatant disregard for public health.
Taking Responsibility
The Paris Climate Accord is a voluntary agreement by the major industrial nations and 174 total countries to recognize the catastrophic effects of global warming and attempt to do something about it. The 2016 climate accord’s goal is to limit global warming to no more than 2 degrees.  The odds of meeting this target are slim (1 in 20) and require drastic changes in human behavior, which include; reducing carbon dioxide levels generated by; coal burning, fossil fuel powered vehicles, and industrial pollution from CFC’s and other poisons. Scientists have been studying global warming for sixty years, through core ice samples, air quality tests on top of mountains, and space surveillance of the ozone layer. There is plenty of scientific evidence to validate the unprecedented global warming the world is now experiencing and the link to human causes. Under the Trump Administration the United States dropped out of the Paris Accord, leaving China to absorb a leadership role in compliance. The U.S. is the single largest contributor to global warming on a per capita basis, which means the proportion of carbon generated from each US resident is far greater than the rest of the world. The top three countries for global warming carbon emissions are; China, United States, and India.[3]
What happens if we exceed 2 degrees warming
To put the challenge of an uncontrolled warming of the earth into perspective, here is what is currently happening to harm our world and the delicate mixture of oxygen and carbon on which we all rely.
Dying Oceans Which Support Biodiversity and Serve as the World’s Air Conditioner
Massive decline in coral and seagrass resources, which support sea life and provide food for fish and humans has already occurred. This precipitous decline could contribute to a dead ocean at some point, unable to support much of the biodiversity we now have. Besides food, we also rely on the oceans for medicine and even cosmetic products, so a real decline in Gross National Product will occur with loss of ocean habitat. Island nations which are hyper dependent on the seas, like Japan, the Philippines, and all South Pacific Islanders will experience the greatest losses.
Permanent Rise in Sea levels
Antarctic ice is melting and the Ross Ice Shelf alone will raise sea levels by several meters. A sea level raise of three meters is nearly ten feet and that means that millions of people throughout the world will have to evacuate their current homes. All coastal cities would be affected.  I live in a coastal city off of Puget Sound (recently renamed the Salish Sea) and at present I am about 39 feet above sea level. By 2050 it is expected this will be reduced by 10%. At that rate, here is a map showing how the rise of sea levels will impact the United States. At least 270 households live at sea level on low or no bank property, which would be susceptible to a sea level rise of 4 feet in my city. In Seattle 800 households are living on land susceptible to a sea level rise of 4 feet, which is expected to occur, by 2050, at least during storms. You can use the risk finder map to see how your community would be impacted by a four-foot sea rise.

You will recall that New York City’s subways were flooded during the last hurricane. Boston, is already at sea level and much of the city would be flooded. Ditto for Washington, D.C., all of Florida, Houston, New Orleans, the entire Gulf Coast region, and much of the west coast. Here is a map showing how many households would be affected throughout the U.S. with a sea level rise of 4 feet.  
Water Shortages
Global warming means there will be less snowpack and that means less water in the rivers and aquifers. This means Washington and Oregon will have less water to sell to California, where half of the state is a desert. Colorado will also have less water to offer California, New Mexico, Texas, and Arizona as the mighty Colorado will not be refilled with as much water from the less snowy Rocky Mountains. Much of the produce in the United States comes from Southern California and water rights will dominate the politics there.
In addition to flooding and loss of useable land, salt water incursion will occur in water reservoirs, which are underground aquifers. This means drinkable water will be greatly reduced in coastal areas and of course, island communities. Lopez Island and others may become unable to sustain populations due to lack of drinking water. Salt water desalination is already being used by those who can afford it on Whidbey Island. Goodbye ten-minute showers, hello compost toilets, and forget about washing your car.
Global warming also means higher and higher temperatures and environmental stress on current power systems and water supplies. Farming in the deserts of Arizona, California, Texas, and Mexico will no longer be sustainable. This phenomenon is already happening in Arizona, where family wells have run dry because of industrial farming demands.[4] It is highly likely a new dust bowl era will occur in the Midwest, including Oklahoma, Arkansas, Nebraska, destroying the livelihoods of millions.
Massive hurricanes and other wind storms will occur with greater ferocity. Yet the Trump Administration did not require that FEMA funded rebuilding after the 2017 hurricanes meet storm surge standards which were developed under the Obama Administration. This is an expensive folly which will be paid for by taxpayers. All of these scenarios are happening now and will only worsen in the next twenty-years.
Trump Administration Actions Which Increase Global Warming
This table shows Trump Administration actions which seek to roll back environmental protections to the Reagan era, by minimizing enforcement and standards for the Environmental Protection Agency.
Environmental Factor
Current Law
Trump Actions
Clean Air Act established by Congress in 1963, but amendments were added in 1970 and 1990; restricts emissions of harmful pollutants which cause asthma, COPD, and other health problems
Standards are set based on scientific evidence, which are meant to reduce adverse health impacts and environmental harms; these data are drawn from long term studies, which are observational and include solid data measurement criteria and statistical analysis
Trump has cut the NASA climate monitoring program; his administration doesn’t want to measure emissions standards, wants to change scientific standards for administering the Clean Air Act; 1,000 scientists have signed a petition protesting Trump’s rewriting of science rules which may be applied to the EPA; also cutting funding for voluntary emissions reducing programs[5]
Clean Water Act was enacted in 1948 and expanded in 1972; prior to this act industrial pollutants were contaminating ground water unimpeded, feel free to Google the Love Canal for more information
Obama Administration rule would limit fertilizer run off into streams, which produce harmful algae blooms, harm fisheries, and impact drinking and recreational water quality; the rules were meant to protect large ecosystems like Chesapeake Bay and Puget Sound from stream and river runoff impacts
January 2018, Trump’s EPA suspended the enforcement of these rules; Essentially this administration says that people in urban areas must comply with environmental protections but those in rural areas are exempt; For example, much of the City of Bremerton (40,000 people) has secondary treatment for storm runoff through the sewer system
Auto Emissions Standards are codified to include measurement of greenhouse gas emissions; for example, auto exhaust measurement in order to renew license tabs, as a compliance mechanism for the California emissions standards, which were effective in 2001[6]
California has its own stricter emissions standards to reduce greenhouse gas emissions and this represents 1/3 of all vehicles in the US, 13 other states, including Washington use this standard; federal standards were stipulated in a 1965 amendment to the Clean Air Act 
August 2018, Trump revokes a legal waiver for California under the 1970 Clean Air Act allowing them to mandate stricter air quality standards for emissions and fuel efficiency; federal standards will be rolled back to pre-1970 pollution standards and mute the sale of clean fuel vehicles
Fuel Efficiency Requirements for cars, light trucks, and SUV’s, reduce fossil fuel pollution without impeding transportation efficiency; electric and alternative fuel vehicles have been mass produced for 20 years; one third of all electric cars in the US are in California
American autos average 26 miles per gallon fuel efficiency now, Obama raised the standard to 54 MPG by 2025; fuel efficiency in Europe is 56.8 MPG and 56.6 in South Korea; the rest of the world is way ahead of the US in fuel efficiency in transportation
Trump rolled back fuel efficiency standards to 37 MPG, also revokes California’s stricter fuel efficiency requirements; 19 states are currently suing the federal government over this executive order[7]
Obama protocols curbed Power Plant Pollution, cutting methane gases and greenhouse gases called hydrofluorocarbons; targeted coal power plants
The Obama Administration created a clean power plan to reduce emissions by 32% by 2030[8]
Trump EPA scrapped the clean power plant mandate to reduce emissions from coal power plants, which kill forests and have harmful health impacts
Building Code updating due to climate change impacts, especially in coastal areas; 128 military installations are at high risk for flooding[9]
Both the Bush and Obama Administrations included climate change for emergency planning; Obama criteria included changing building codes for flood prone areas to mandate construction of key roads and bridges above flood levels
Trump won’t allow FEMA to consider climate change in federal emergency planning nor will it require upgrading building codes for flood prone areas, even for public infrastructure
Action Required-What You Can Do
Here is a list of things I have done to reduce my impact on the environment over the past forty years: 
  1. Ride a bicycle-you save money, stay fit and it provides zero pollution
  2. Use public transportation instead of a single occupancy vehicle (where possible) 
  3. Share a ride through one of the ride sharing options 
  4. Produce less waste-don’t buy plastic, use recyclable bags, eschew straws, buy in bulk
  5. Cook and grow some of your own food
  6. Recycle what you can and give things away rather than toss them into a landfill 
  7. Be mindful about purchasing things, repair things rather than throwing them away
  8.  Buy less but do more-do more hiking, biking, and swimming but make fewer trips to the mall
  9. Join recreational clubs where you can share access to boats and recreational equipment
  10. Buy recycled products when possible
  11. Use natural cleaning products you can make yourself from vinegar and oranges at home
  12. Design gardens which do not require poisons to maintain  
  13. Collect rain water, through rain gardens or other catchment systems
  14.  Increase the energy efficiency of your home by installing insulated window coverings and other energy saving features
  15. Avoid Styrofoam containers and packing, but recycle it if you receive a package containing it
  16. Do not buy any products which have CFC’s in them, which greatly increase global warming because they stay in the atmosphere including: aerosol sprays, solvents, foam blowing agents-like insulation, and refrigerants. Nasal inhalers for asthmatics are now available in the US which are CFC free. Refrigerants manufactured after 2010 are less harmful than before, so newer appliances help. Refrigerants must be handled by EPA certified contractors and that includes decommissioning.
  17.  Do not buy vehicles with poor fuel efficiency, refuse to buy cars or trucks which do not meet the EPA emissions standards of California, which have been adopted by 15 other states (Arizona's governor repealed theirs in 2012). Here is a list of states which have adopted the California Emissions Standards-California, Connecticut, District of Columbia, Maine, Maryland, Massachusetts, New Jersey, New Mexico, New York, Oregon, Pennsylvania, Rhode Island, Vermont, and Washington[11]
  18. Do not book or attend conferences or conventions in states which refuse to support healthy environmental practices and are stripping the power of the EPA.    
  19. Work with the National Resources Defense Council and other advocacy groups to contact your legislators and prevent the wholesale gutting of the clean air and clean water provisions of the Environmental Protection Acts. We cannot afford to go backwards, as our lives are at stake, this is about much more than profits.   
  20. Follow federal and state legislation that will adversely impact your health. Here are some links:
And finally, get involved politically, most importantly vote, in local elections, in state elections, and at the national level. Save the planet before we all burn up or drown-get Trump out of office!

And this is the healthpolicymaven signing off, encouraging you not to sign blanket waivers when consenting to medical procedures or hospital admissions. Do specify that for which you consent and that for which you decline, otherwise your health is subject to medical policies based on someone else’s religion, values, or business plan. If you need help with this, bring a patient advocate to your pre-op session.

Roberta Winter is a freelance writer and healthpolicy analyst who has continuously published Straight Talk on Healthcare since 2007. Her writing has been published by Rowman and Littlefield, the New York Times, the New York Journal of Books, and she has served as a peer reviewer and technical editor for healthcare  publications. She has continuously published under the healthpolicymaven trademark since 2007. All opinions expressed here are hers and are not subject to any corporate or institutional approval.

Thursday, June 21, 2018

Cyclist Rides from Washington to California to Advocate for a Cure for Type 1 Diabetes

There is no formal blog post this month as I am completing the inaugural Russell Ride, which is just shy of 900 miles in eight days, to raise awareness and money to cure Type 1 Diabetes. I chose this challenge in March because of the depressing actions of the Trump presidency and my desire to do something positive. Riding a lot of fifty mile rides has helped my morose attitude. You can see my rides with this link to the Ride with GPS site, where I am listed as healthpolicymaven:

 I have logged over 1,000 miles in training rides just in the last 21 rides, with 69,764 feet elevation gain. Riding 100 miles a day should not be too difficult, assuming there isn't a strong headwind, but I have overcome that before. So far, the only media that seems interested in the event is the Napa Register, which is the local paper for the end destination. I will be speaking with people along the way, spreading the word about Benaroya Research's work on gene editing and trying to cure Type 1 Diabetes.

Thanks to all of the local people in Bremerton who shared their experiences about diabetes and contributed to the ride. I will carry your stories with me like ephemeral blessings.

Though I started this ride as a way to distract from the fear mongering and negative actions of the current administration, it seems Trump has managed to become a real potentate of evil, stripping children, including infants, from their mother's breasts at the border. Not to mention dropping out of the United Nations Human Rights Commission, one of only three other nations to do so. Thus, I will unplug for eight days and ride for my brother Russell and my nephew Jeremy, and everyone else who has Type 1 Diabetes.

Please share this on your social media pages, as I have not met my fundraising goal yet and though I had originally envisioned doing this ride with others, it is a solo, unsupported ride. Some of my readers have contributed, but more are needed.

And this is the healthpolicymaven signing off encouraging you not to sign generic release forms when you are at a medical facility and do stipulate that for which you agree and that for which you do not.


Thursday, May 17, 2018

People Are Dying in the US Because They Can't Afford Insulin-Required Action and Solutions

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 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.[1] 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.[2] 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.
The Lown Institute just completed a Mother’s Day Campaign to educate the public on people whom have died because they can’t afford their insulin. Please join the Lown Institute’s campaign to change this gross inequity in our healthcare system at:
 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 7th leading cause of death in the United States and is thought to be under reported,[3] 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.[4]
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.[5] 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.[6] 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 [7] 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]
8% price increases in 2017 alone [9], 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, 2016)
In 2015 Lantus was the world’s top selling insulin and generated 17% of all profits for Sanofi (6.86 billion)[10]
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:

  1. 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)
  2. Require Pharmaceutical companies to show statistical evidence of a population health benefit for new drugs and not just a scientific benefit.
  3. Ban all direct to consumer advertising for drugs in the United States-this isn’t about science but about developing market share.
  4. Stop allowing patent extensions for specious modifications which are minor and profit not patient motivated.
  5. 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.
  6. 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.
  7. 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
Pharmaceutical (2016, March 29). The World's Top Selling Diabetes Drugs. Pharmaceutical Retrieved May 17, 2018, from