SALT LAKE CITY — When it comes to the cost of managing her daughter's diabetes, Stacey Stocking says she feels like a "hostage."
The West Valley City mother of three pays for an insurance plan that is half her mortgage. She has a $2,000 deductible. She stuck with her job at a bank, instead of quitting as planned seven years ago, because she and her husband need the insurance.
So when Stocking saw the news about the EpiPen — and its triple, then quadruple, then quintuple price increases — her first reaction was outrage. Her second was fear.
Because even though her 12-year-old daughter doesn’t need the EpiPen, Madi does need insulin and glucagon — both of which have also risen in price in a few short years.
"This is something she needs to live," Stocking said. "There's absolutely no reason someone should be profiting off of our children or our loved ones in any way, shape, or form."
"I think that's where the outrage comes from," she added. "I'm willing to pay the money to save my kid's life. I'll pay whatever I have to. And they know that."
The furor over EpiPens last week set off a cascade of complaints about other drugs that have also jumped in price in recent years. The message from parents, doctors and pharmacists alike: It’s not just EpiPen.
Some of the drugs are household names.
Insulin soared from $231 per patient per year in 2002 to $736 in 2013, according to the Journal of the American Medical Association. Enbrel and Humira, two arthritis drugs, have more than doubled in price since 2009, according to a Reuters analysis. There's Ritalin for ADHD, albendazole for parasites, albuterol for inhalers. All of them are on their way up.
Then there are the drugs that aren’t well-known to the average person but are critical for hospitals and ERs.
Erin Fox, who directs the drug information service at University of Utah Health Care and runs a national drug shortage database, gave several examples.
Magnesium sulfate injections has risen 120 percent in the past four years. The cost of sodium phosphate has climbed 2,000 percent in the same time period, she said.
Nitroprusside, a drug that helps treat high blood pressure, climbed from $50 per vial to $650 over the course of three years as the product was repeatedly sold from one drug company to another.
Today, Fox said, nitroprusside costs the hospital $880 per vial.
National figures back up the anecdotal data. According to the Centers for Medicare and Medicaid Services, prescription drug spending in the U.S. hit $298 billion in 2014 — a record 12.2 percent spike.
State figures also show ballooning drug costs. The largest accountable care organization in Utah, SelectHealth, says its monthly pharmacy costs per member have risen 80 percent since 2010, from an average of $40 a month to $70 a month.
Eric Cannon, who oversees SelectHealth’s pharmacy benefit management group, said pharmaceuticals “are the single biggest contributor to the medical expense trend.”
According to Cannon, much of the SelectHealth's spending surge has been driven by anti-inflammatory drugs (up 47 percent), multiple sclerosis drugs (up 101 percent) and insulin (up 82 to 136 percent, depending on the formulation).
At the same time, the company has seen little benefit, he said. For example, despite the fact that SelectHealth’s spending on diabetes has increased 32 percent since 2011, overall outcomes have not changed.
“In other words, we paid 32 percent more and saw no real improvements for our members and patients,” Cannon said.
A price emergency
Some say hospitals are the lucky ones.
EMS agencies have even less bargaining power than hospitals, said Dr. Peter Taillac, an emergency physician at University Hospital and medical director at the state's Bureau of Emergency Medical Services.
Taillac said common emergency drugs like saline, morphine and calcium are experiencing shortages so severe that about five years ago, Utah’s agencies became among the first in the country to get authorization to use certain medications for up to six months past the listed expiration date.
Now glucagon, an emergency blood glucose drug not unlike the EpiPen, is becoming so expensive that some agencies are hoping to share supplies with other agencies, Taillac said.
Other price increases are affecting local public health efforts.
Naloxone, a well-known overdose reversal drug that has been tapped as a key weapon in the fight against the prescription painkiller crisis, has risen dramatically in price in every formulation.
Dr. Jennifer Plumb, co-founder of Utah Naloxone and a pediatric emergency medicine doctor at Primary Children’s Hospital, said the two vials of naloxone included in each of the group's kits cost about $15 each.
Ten years ago, they cost less than a dollar, she said.
The intranasal form now costs about $42 a pop — up from about $10 per dose, Plumb said. And the auto-injector version? Plumb had the pharmacy check last week. At the beginning of this year, the cash price was $700 per dose. Now? $4,500.
"We're talking about medications that cost a penny or less to make," she said. "These are old medications, much like epinephrine. It’s really challenging to understand the rationale, beyond cranking up the prices.”
A broken system
When it comes down to it, Fox said, drug companies jack up the prices “because they can.”
She drew a distinction between pharmaceutical companies that make innovative breakthrough drugs and those that merely repackage old ones.
Some drugs with eyebrow-raising prices — such as the $1,000-a-pill hepatitis C drugs — are true breakthroughs that will likely prove cheaper than the current alternatives, like having a liver transplant.
But Fox has little sympathy for companies like Mylan or Valeant, who do not manufacture the drugs they sell — merely market them.
“They’re not doing anything,” Fox said of Valeant, the company that bought the nitroprusside heart medication and immediately increased the price. “All they’re doing is getting the product from Hospira and putting a Valeant sticker on the vial.”
But patients have largely been shielded from the real cost of their medicines, Fox said. Patients are “used to paying a $10 or $20 co-pay, but they never really saw what medicine actually costs," she said. Now more and more people are switching to high-deductible plans and noticing the price increases.
A number of other inefficiencies also contribute to the problem.
Drug makers in the U.S. get "market exclusivity" protections, which means they have five to seven years before generic makers can start selling their cheaper versions. Some companies go even further by paying rivals to delay bringing their generic versions onto the market — a practice the Federal Trade Commission is trying to crack down on.
Drugs also change many hands before they get to the patient — including pharmacies and insurers who have to choose between eating the cost and passing them onto consumers.
On top of that, Fox said, the supply chain for generics is fragile. Many common injections used by hospitals are manufactured by three or fewer companies, which means shortages are common and prices are high, she said.
A good start
For solutions, many experts are pointing to outside the U.S.
Take the best-selling drug in the world in 2014, Humira. It cost more than $2,500 a month in the U.S. in 2014, according to a Bloomberg analysis. In the U.K., it cost $1,750 per month. In France, $982.
What about Advair, an asthma inhaler? $155 per month in the U.S. for an average dose. In Canada, $74. In Norway, $24.
Lantus, the long-acting insulin is $186 a month in the U.S., $63 a month in the U.K. and $47 a month in France.
In many European countries, single-payer health care is the norm and governments can negotiate drug prices directly with manufacturers, according to Fox. Not so in the U.S., where Medicare is banned from negotiating with drug companies.
Many European countries also have so-called "reference pricing," in which drugs with similar medical benefits are grouped into categories. Insurers pay a set price for any drug in the same category. Drug makers can choose to set their product at a higher price, but if a consumer wants it, he or she pays the difference.
Drug pricing reform also needs to promote transparency, according to Fox.
The Campaign for Sustainable Rx Pricing wants the government to require drug companies to disclose the prices of their medicines — and how much of the research and development was funded by public entities.
The group also supports increased funding for research into the effectiveness of drugs. Many countries require so-called "comparative effectiveness" studies to demonstrate the benefits and harms of each product compared to competitors.
In addition, the FDA should expedite the review process for generic drugs, according to the organization.
In the short-term, Fox encourages patients to discuss cheaper alternatives with their doctors and pharmacists, especially if they feel their medication is not working well.
If there's any upside to the furor over drug prices, Fox said, it's that the constant sticker shock is spurring patients to shop around and speak up more than ever before.
In that sense, “I think Martin Shkreli did us all a favor,” Fox added, referring to the controversial pharmaceutical executive who received widespread criticism when his company raised the price of the drug Daraprim by 5,556 percent last year.
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