RIVERSIDE ‚ÄĒ Before going to bed, Asia Higginson has had to reassure her 11-year-old daughter, Taylor, that she won‚Äôt die in her sleep.
Taylor has Type 1 diabetes, an incurable autoimmune disease that impairs one‚Äôs ability to produce insulin. She was diagnosed at 16-months-old.
It‚Äôs a burden ‚ÄĒ physically, emotionally and economically ‚ÄĒ she will carry for the rest of her life.
‚ÄúIt‚Äôs OK,‚ÄĚ Taylor said, smiling, Friday at her aunt‚Äôs home. ‚ÄúI don‚Äôt really like (the disease), but it‚Äôs OK.‚ÄĚ
A national study completed last year in Sweden found that life expectancy for those diagnosed at a young age ‚Äúis on average 16 years shorter compared to people without diabetes, and 10 years shorter for those diagnosed at an older age,‚ÄĚ Science X‚Äôs website, medicalxpress.com, reported. Science X is web-based science, research and technology news service.
The report said an early diagnosis is associated with more cardiovascular complications and a higher risk of premature death than a diagnosis later in life.
Diabetes stops, or slows, the generation of insulin, a hormone released from the pancreas that helps break down carbohydrates and elevated levels of sugar in human‚Äôs blood and urine.
‚ÄúThe whole disease is ugly,‚ÄĚ Asia Higginson said. ‚ÄúIt doesn‚Äôt play fair.‚ÄĚ
‚ÄúAnd they‚Äôre making it harder when they are making people decide if they can afford it or not,‚ÄĚ she added.
What Higginson is talking about is the skyrocketing costs to manage the difficult, almost invisible disease.
The two types of diabetes‚ÄĒ Type 1 and Type 2 ‚ÄĒ affected about 30.3 million Americans (9.4 percent) as of 2015, according to the CDC. There were 111,500 Idaho adults (or 8.7 percent of the state‚Äôs population) with diabetes in 2017, according to Idaho Department of Health and Welfare records.
Type 1 diabetes, once known as ‚Äújuvenile diabetes,‚ÄĚ requires rigorous daily management including multiple insulin injections (via an insulin pump or shots), blood sugar monitoring, carbohydrate counting, exercise and diet. Type 2, also known as ‚Äúonset diabetes‚ÄĚ and the more common form, requires lifestyle changes, though insulin injections isn‚Äôt always required. Both types require yearly checkups with doctors, endocrinologists and ophthalmologists ‚ÄĒ costing hundreds of thousands of dollars over the course of a lifetime.
Short-term complications can lead to confusion, severe dehydration, coma and even death. Long-term complications include blindness, amputation of limbs and heart and kidney failure.
Insulin is a lifesaving treatment for Type 1 diabetics, but its costs have increased astronomically during the previous decade.
‚ÄúThere‚Äôs enough things in life we have to worry about, period,‚ÄĚ Higginson said. ‚ÄúBut to think about living ‚Ä¶ Insulin isn‚Äôt a cure, it‚Äôs a treatment. They have to have this to live.‚ÄĚ
Diabetics across the country spend anywhere from $100 to $340 out of pocket for a vial of insulin. A vial can last a diabetic anywhere from a week to three weeks, depending on management styles.
The Health Care Cost Institute provided data that showed diabetics paid on average $2,864 for insulin in 2012. By 2016, the annual average cost of insulin increased to $5,706 a year, according to the nonprofit.
Even with insurance, some diabetics face co-pays of up to $80 for vials of insulin.
Higginson said she pays a $130 co-pay for Taylor‚Äôs three-month supply of Humalog brand insulin. Including supplies and doctor bills every month, Higginson said her family, which has Blue Cross Blue Shield, spends close to $500 a month just to manage Taylor‚Äôs disease. She said Taylor‚Äôs insulin has never been less than $100.
Carmen Armenta, who recently had to get on kidney dialysis and said she has Blue Cross Blue Shield Idaho, paid a $270 co-pay for a vial of insulin after her insurance changed in January. From Idaho Falls, she said she paid $70 to $90 for a vial of NovoLog brand, sometimes three to four times a month, from 2013 to 2018.
Those prices don‚Äôt include the price of Armenta‚Äôs insulin pump ‚ÄĒ which can cost anywhere from $4,500 to $7,500 without insurance ‚ÄĒ and dialysis treatments, while she takes her insulin.
‚ÄúI can‚Äôt be like ‚Äėnot today,‚Äô‚ÄĚ said Armenta, who was diagnosed at the age of 4 and has battled the disease for close to 30 years. ‚ÄúI have to do it or I die.‚ÄĚ
Insulin‚Äôs creators sold the patent for the lifesaving drug for $1 so it would be available to everyone who needed it, according to NPR.
Today‚Äôs high, and for many, unaffordable insulin costs have led to black markets for test strips, untimely deaths due to young diabetics aging off their parents‚Äô insurance, diabetics traveling (or moving) to Canada for lower prices, skipping meals and the rationing of insulin ‚ÄĒ which can lead to severe complications.
‚ÄúI think it‚Äôs highway robbery, personally,‚ÄĚ said Josh Smith, a Rocky Mountain Diabetes endocrinologist, of the rising costs.
The reasons for higher prices over the years are complicated and the growing outcry has caused insulin manufacturers and insurance companies to point fingers at one another.
Where the alleged price gouging has taken place is between the three main pharmaceutical drug manufacturers (Eli Lilly, Novo Nordisk and Sanfori) and insurance companies, multiple news organizations have reported. Insurance companies use pharmacy benefit managers (also known as PBMs) to manage the prescription drug coverage of a health care service plan.
A new California law, which regulates PBMs, describes them as ‚Äúa person or entity that enters into a contractual agreement to manage the prescription drug coverage of a health care service plan, including processing and paying claims for prescription drugs, processing drug prior authorization requests, adjudicating appeals related to prescription drug coverage, contracting with network pharmacies, and controlling the cost of covered prescription drugs,‚ÄĚ the website Policy and Medicine reported.
Since 2001, all three manufacturers have raised their prices to a similar level, the Washington Post reported. For example: Sanfori‚Äôs long-lasting insulin brand, Lantus, was $35 when it hit the market in 2001. It now costs $270, the Post reported.
Insulin is a biologic drug ‚ÄĒ or produced of living cells ‚ÄĒ making it a ‚Äúdifficult manufacturing process,‚ÄĚ according to an op-ed by Dr. Danielle Ofri published in the New York Times. And instead of working to create cheaper, effective and generic versions to propel competition, drug companies have slightly tweaked their formulations so they can get new patents, Ofri wrote.
Rising costs have led to social movements ‚ÄĒ ‚ÄúInsulin4All‚ÄĚ is a common hashtag on Twitter ‚ÄĒ and a 2017 federal lawsuit from Massachusetts was filed against the three drug makers for conspiring to drive up the costs of insulin, the New York Times reported in 2017.
The continual increase of insulin costs mostly happens behind closed doors. The Times reported that drug manufacturers set two prices: one that is the higher listing price and one that is a lower ‚Äúreal‚ÄĚ price the insurance companies pay.
Insurance companies don‚Äôt pay the prices drug companies set, but PBMs negotiate rebates for insurance companies, taking an undisclosed amount of those rebates for themselves, the Times reported.
Smith said the 300- to 400-percent increase in the price of Eli Lilly‚Äôs insulin during the previous decade is, simply, ‚Äúunheard of.‚ÄĚ
‚ÄúThe cost to manufacture a vial of insulin is pennies,‚ÄĚ Smith added. ‚ÄúI understand R&D costs; I get that. We need research development to get better insulin, because they are not perfect, but the fact that the manufacturers have to price things the way they are, because of the pharmacy benefit managers and their relationships with insurances, is ridiculous.‚ÄĚ
Synthetic insulin can be purchased at local pharmacies for about $25 a vial, but diabetics have said the synthetic insulin isn‚Äôt as effective. For example: NPH, or ‚Äúfast-acting insulin,‚ÄĚ can cause some diabetics‚Äô blood sugar levels to crash or routines to become irregular.
Smith said one solution to the growing epidemic could be to have insulin completely covered by insurance companies (as most vaccines are). Another would be to regulate, or eliminate, PBMs, Smith said.
‚ÄúWe‚Äôre at the mercy of the insurance companies, we are the mercy of whatever the patient can get,‚ÄĚ Smith said.
The issue has raised concern nationally, with some bipartisan support from the U.S. Government and President Donald Trump.
For Armenta and Taylor, though, the battle continues every day.
On Friday, Taylor played with her 7-year-old sister Lexie and 7-year-old cousin Ridge Popejoy during her day off from Snake River Middle School. She has a Dexcom patch attached to the back of her right arm. Her insulin pump is connected to her lower back.
Her blood sugar tested around 200, as she carried Lexie on her shoulders and played with toys.
Taylor‚Äôs daily routine includes checking her blood sugar about eight times a day, the family said. Asia kept a watchful eye over her during an hour-long interview.
Asia said she worries about her daughter‚Äôs life down the road (Taylor says she wants to be a police officer one day).
She reflects often on the disease and how taxing it can be for a family: the sleepless nights checking on her daughter; the burden it can potentially place on family and friends; the fear of Taylor one day losing a limb or dying; the thousands of dollars paid.
But, she vows to always help pay for her daughter‚Äôs insulin.
‚ÄúShe didn‚Äôt ask for this,‚ÄĚ Asia said. ‚ÄúNobody did.‚ÄĚ