Why Is Health Care In America So Fucked Up?

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this is a good one for fxh fxh

https://consumerist.com/2017/09/26/...ng-prescription-drugs-and-what-do-they-treat/

What Are The 10 Biggest Money-Making Prescription Drugs, And What Do They Treat?
September 26, 20179:25 am EDTBy Kate Cox@kcoxdc

BILLIONS AND BILLIONSDRUG PRICES HUMIRA HARVONI ENBREL LANTUS SOLOSTAR REMICADE JANUVIA ADVAIR DISKUS LYRICA CRESTOR NEULASTA

It’s no secret that big pharma is big business. Americans spend hundreds of billions on prescription medications every year, with that figure projected to keep growing. And now a new report shows that the top-selling brand-name prescription drugs in the U.S. earn more than $60 billion a year for their manufacturers, with the biggest money-maker topping $13 billion per year in sales on its own.

Axios compiled a handy chart of the top 20 top-selling drugs in the U.S. in 2016, based on data from the QuintilesIMS Institute.

The figures, Axios notes, are pure gross figures, and so don’t reflect what individuals or their insurers are paying, and don’t include any negotiations, discounts, rebates, coupons, or promotions. Still, they show a clear pattern of how many billions of dollars the top blockbuster drugs are bringing in.

Below is some more information on the ten biggest earners in the U.S. prescription drug business. Combined, they represent more than $60 billion a year in sales. Only three of these drugs have generic versions available; some of them have generic versions that could be released but are being held up by lawsuits. In terms of the ailments treated by these pharmaceutical money-makers, rheumatoid arthritis shows up most frequently, followed by diabetes.

1. Humira (adalimumab): $13.6 billion
Manufacturer: AbbVie
Introduced: 2003 (granted FDA approval Dec. 31, 2002)
Treats: First introduced to treat rheumatoid arthritis; now also prescribed for psoriatic arthritis, juvenile ideopathic arthritis, ankylosing spondylitis, plaque psoriasis, ulcerative colitis, and Crohn’s disease.
Currently costs: $49,752 – $58,044 per year [PDF]
Generic available? No.

The FDA approved a biosimilar drug, Amjevita, from Amgen in late 2016. However, AbbVie sued Amgen over it, claiming patent infringement. Due to that ongoing litigation Amgen executives have said not to expect their product to ship until 2018 at the earliest.

2. Harvoni (ledipasvir/sofosbuvir): $10 billion
Manufacturer: Gilead
Introduced: 2014 (granted FDA approval Oct. 10, 2014)
Treats: Hepatitis C
Currently costs: $94,500 for 12-week regimen; $113,400 – $226,800 per year [PDF]
Generic available?: No.

Harvoni is the specific combination of two drugs, ledipasvir and sofosbuvir. Generica drug company Mylan, after entering a deal with Gilead, has launched a generic equivalent in India, but it is not currently approved or for sale in the U.S.

3. Enbrel (etanercept): $7.4 billion
Manufacturer: Amgen
Introduced: 1998 (granted FDA approval Nov. 2, 1998)
Treats: First introduced as to treat rheumatoid arthritis; now also prescribed for psoriatic arthritis, juvenile ideopathic arthritis, ankylosing spondylitis, and plaque psoriasis.
Currently costs: $49,762 – $62,202 per year [PDF]
Generic available?: No.

In Aug. 2016, the FDA approved a biosimilar drug (Erelzi) made by Novartis. However, as with the generic version of Humira, this drug is being held up because Novartis is being sued for alleged patent infringement by Amgen. That legal action is expected to delay any biosimilar to Enbrel from hitting the market until 2018 at the earliest, and possibly not until 2029.

4. Lantus Solostar (insulin glargine): $5.7 billion
Manufacturer: Sanofi-Aventus
Introduced: 2000 (granted FDA approval Apr. 20, 2000; Solostar is specifically an automatic pen-style delivery mechanism)
Treats: Diabetes
Currently costs: Approx. $75 per pen (annual dosing varies widely; one pen may last from less than a day to more than a week)
Generic available? Yes.

The FDA approved the biosimilar Basaglar, made by Eli Lilly, in Dec. 2015. At launch, Basaglar was priced at 15% less than Lantus.

5. Remicade (infliximab): $5.3 billion
Manufacturer: Johnson & Johnson
Introduced: 1998 (granted FDA approval Aug. 24, 1998)
Treats: Crohn’s disease, ulcerative colitis, psoriasis, psoriatic arthritis, ankylosing spondylitis, and rheumatoid arthritis.
Currently costs: $39,223 per year [PDF]
Generic available?: Yes.

The FDA has approved two biosimilars to Remicade: Inflectra, in Apr. 2016, and Renflexis, in Apr. 2017. The two are made by Pfizer and Merck, respectively.

6. Januvia (sitagliptin), $4.8 billion
Manufacturer: Merck
Introduced: 2006 (gained FDA approval Oct. 17, 2006)
Treats: Diabetes
Currently costs: Price varies widely by dose; anywhere from $8 to $15 per pill
Generic available?: No.

7. Advair Diskus (fluticasone/salmeterol), $4.7 billion
Manufacturer: GSK
Introduced: 2000 (gained FDA approval Aug. 24, 2000)
Treats: Asthma, COPD, and other respiratory issues
Currently costs: Price varies widely depending on formulation, and dosage varies from person to person. Price for one inhaler is approximately between $230 and $370.
Generic available?: No.

Competitor Hikma did apply for approval for a generic; however, its application was denied earlier this year, as was another potential generic version from Mylan. Neither is expected to reach market before 2018 at the earliest.

8. Lyrica (pregabalin): $4.4 billion
Manufacturer: Pfizer
Introduced: 2005 (gained FDA approval Dec. 30, 2004)
Treats: Nerve pain, including from fibromyalgia, diabetes, or shingles; epilepsy; generalized anxiety disorders
Currently costs: Price varies; 60-capsule supply runs approx. $500.
Generic available?: No.

In 2014, Pfizer won a lawsuit blocking the entry of a generic competitor to Lyrica onto the market until Dec. 2018 at the earliest.

9. Crestor (rosuvastatin): $4.2 billion
Manufacturer: AstraZeneca
Introduced: 2003 (gained FDA approval Aug. 13, 2003)
Treats: High cholesterol (statin)
Currently costs: Price varies; an average of around $170 for 30 tablets.
Generic available?:Yes.

The FDA approved the first generic version of Crestor in Apr, 2016.

10. Neulasta (pegfilgrastim): $4.2 billion
Manufacturer: Amgen
Introduced: 2002 (gained FDA approval Jan. 31, 2002)
Treats: Reduces the chance of infection in patients undergoing chemotherapy
Currently costs: $23,5900 per year [PDF]
Generic available?: No.

Novartis applied to have a biosimilar drug approved, but that application was rejected in 2016.
 
USA Prices
Humira (adalimumab): $13.6 billion Manufacturer: AbbVie Introduced: 2003 (granted FDA approval Dec. 31, 2002)
Treats: First introduced to treat rheumatoid arthritis; now also prescribed for psoriatic arthritis, juvenile ideopathic arthritis, ankylosing spondylitis, plaque psoriasis, ulcerative colitis, and Crohn’s disease.
Currently costs: $49,752 – $58,044 per year

Australian Prices
Code & Prescriber Medicinal Product Pack (Name, form & strength and pack size) Max qty packs Max qty units No. of repeats DPMQ Max Safety Net General Patient Price
5282BMP ADALIMUMAB
adalimumab 40 mg/0.8 mL injection, 2 x 0.8 mL cartridges (PI, CMI)

Costs to patient= $38.80 per script (Not sure this might be for 2 x months?) = $240 Per Year
NB: There is a safety net around $1,500 P A whereby when the total of Pharmaceutical fees for ALL medicines exceeds aud$1,500 a patient pays around $6.50 per script from then on or if concessional (pension, welfare etc) pays NIL.
 
I thought one of the reasons prescription drugs where so expensive in the USA was because the US consumer is actually paying for all the R&D?
 
Pimpernel Smith said:
I thought one of the reasons prescription drugs where so expensive in the USA was because the US consumer is actually paying for all the R&D?
Click to expand...
Big R&D budgets are a lie. Most of what we pay for goes to marketing and advertising, as well as goosing shareholder value.
 
Pimpernel Smith said:
I thought one of the reasons prescription drugs where so expensive in the USA was because the US consumer is actually paying for all the R&D?
Click to expand...
Thats largely bullshit. Much research, not all, is done on taxpayers research money.
 
fxh said:
Thats largely bullshit. Much research, not all, is done on taxpayers research money.
Click to expand...

That's the argument that is often presented.

My understanding is that the patent on a drug is a short time and they need to maximize profits in the first years before the generic drugs come out? I remember in Rio drugs from the big-branded pharma companies was extremely expensive, it was the only thing that was expensive there. But you could buy the Brazilian generic equivalents quite cheaply, but as the company doctor warned me, would you trust Brazilian quality control?

My brother is in pharmaceutical sales by the way, he's doing rather well.
 
The Average Nursing Home Room Now Costs Nearly $100K Per Year


September 27, 201712:30


Sure, you might be a spry 30-something living your best life, leaving the future for the future. But a new report suggests you might want to start planning for you later years, as the costs of long-term care are surging and don’t appear to be stabilizing anytime soon.

While long-term care can be provided in a variety of settings — from in-home health aides to private nursing home facilities — each option comes at an expense, and it keeps growing.

A new report [PDF] from Genworth Financial found that the medical cost of long-term care has increased 4.5% percent in just the last year.

The increases represent the second-highest year-over-year increase for nursing homes and home care since the company began tracking costs in 2004.

Nursing Home Care
Genworth’s report looked at a variety of care options, but notes that consumers in need of around-the-clock care will likely seek out a nursing home facility. But these facilities also come with the highest cost.

According to the report, private rooms in a nursing home have increased 5.5%, while the cost of a semi-private room has increased 4.44%.

The national average for a patient to live in a private room at a nursing home is $8,121/month, or roughly $97,452/year. Move to a semi-private room and the cost drops slightly to $7,148/month, or $85,776/year.



While you might think those costs are pretty steep, it will only climb over time.

In 2027, the cost for a private room increases to $10,914 per month, or $130,968/year, while the semi-private room will run $9,606/month, or $115,272/year.

In-Home Services
Families looking to keep their loved ones at home, but with a little bit of help, will also find their expenses increasing.

For instance, home health aide services — which involve “hands-on” personal care — have increased 6.17% to $4,099/month.

On the other hand, homemaker services — which is described as hands-off care, such as cooking, cleaning, and running errands — have increased 4.75% to $3,994/month.

In the future, the costs continue to climb. A home health aide will cost $5,509/month in 2027, while homemaker services will increase to $5,368/month in 10 years.

Contributing Factors
Genworth notes that the increases in long-term care can be attributed to a perfect storm of labor shortages, increases to minimum wages, tighter Medicare rules, and sicker patients.

For example, nursing home costs have increased due to a combination of higher labor costs and tightened Medicare rules, which have resulted in shortened hospital stays and sicker patients being sent to rehab nursing homes for shorter stays, where costs have risen to cover those chronic medical conditions, Noreen Guanci, CEO and co-founder of Long Term Solutions, said in a statement.

Additionally, room and board has also increased over the past two to three years in order to accommodate residents who are sicker.

Why Do We Care?
While many consumers aren’t thinking of their future long-term care needs, that doesn’t mean they shouldn’t.

This is especially true, Genworth found, when it comes to consumers’ expectations of their own out-of-pocket costs.

A consumer sentiment survey conducted in conjunction with the Cost of Care Survey found that nearly two-thirds of respondents expect government programs to cover allow part of their long-term care costs.

However, that likely won’t be the case, Genworth reports. Medicare, for example, will pay for limited nursing home care following a three-day hospital stay, but only if the patient has been formally admitted to a Medicare-certified nursing facility as an in-patient and not for observation.

Medicare also doesn’t pay for home care, if skilled nursing care is not needed.

“The purpose of the study is to raise awareness about the cost of aging and help start the conversation about planning for long-term care,” David O’Leary, president and CEO of Genworth’s US Life Division, said in a statement.
 
Hello American Friends,

Read Alexis de Tocqueville Democracy in America if you want the answer to this thread. You'll understand better your country. Written 170 years ago and always pertinent.
 
The dosage issue is the same with shampoo and washing machine detergent - you actually get a better wash using half to 25% of the recommended capful of detergent. Yet most people with put in 2 x the recommended dosage thinking that if a bit is good then a lot must be better. The dosage on a pump of shampoo or conditioner is far too much
 
Why opioids are such an American problem
When it comes to taking opioids, the United States has the dubious honour of leading the world.

For every one million Americans, almost 50,000 doses of opioids are taken every day. That's four times the rate in the UK.

There are often good reasons for taking opioids. Cancer patients use them for pain relief, as do patients recovering from surgery (codeine and morphine are opioids, for example).

But take too many and you have a problem. And America certainly has a problem.
In two years, the town of Kermit in West Virginia received almost nine million opioid pills, according to a congressional committee. Just 400 people live in Kermit.

Nationally, opioids killed more than 33,000 people in 2015, according to the Centers for Disease Control and Prevention.

That figure includes deaths from heroin, an illegal opioid. But almost half involved a prescription opioid - that is, a painkiller available from a pharmacy with a note from a doctor.

So why does America - more than any country in the world - have an opioid problem?

There is more than one cause. But these are some of the most important.

American doctors prescribe - a lot
Unlike most European countries, the US does not have universal healthcare paid for by taxes.

Instead, Americans must get their own insurance - usually via an employer or the government.

"Most insurance, especially for poor people, won't pay for anything but a pill," says Professor Judith Feinberg from the West Virginia University School of Medicine.

"Say you have a patient that's 45 years old. They have lower back pain, you examine them, they have a muscle spasm.

"Really the best thing is physical therapy, but no one will pay for that. So doctors get very ready to pull out the prescription pad.

"Even if the insurance covers physical therapy, you probably need prior authorisation (from the insurer) - which is a lot of time and paperwork."

The CDC says opioid prescriptions have fallen by 18% from their peak in 2010. But the total is still three times higher than in 1999.

'I saw this drug on TV'
The US and New Zealand are the only countries that allow prescription drugs to be advertised on television.

According to the research firm Kantar, spending on advertising by pharmaceutical companies in the US reached $6.4 billion in 2016 - a rise of 64% since 2012.

None of the 10 most-advertised brands in 2016 was an opioid. But mass-marketing of drugs has an effect, says Professor Feinberg.

"As a clinician, people will come and say 'I saw this on TV - can you give me this drug'.

"Sometimes they were so confused, they were already on the drug - they were using the brand name, where I used the generic name."

In 2015, the American Medical Association called for a ban on adverts for prescription drugs. It didn't happen.

Three months later, the extent of America's opioid culture was seen at half-time of the Superbowl - the country's most expensive advertising slot.

A 60-second ad was devoted to opioid-induced constipation. The advert - paid for by AstraZeneca - advised sufferers to visit their doctor and "ask about prescription treatment options".

Gifts to doctors
In the US, it is common for drug companies to court doctors, in an effort to promote their products.

"When you're a doctor in the US, these detailing people (salespeople) come in from the industry," says Professor Keith Humphreys from Stanford University.

"They are invariably smooth, friendly, attractive, sharply dressed, adorable, they're giving out gifts to everybody. They host dinners, they sponsor conferences, they sponsor junkets.

"That is going to affect prescribing."

For the past four years, the US government has published the amounts paid by drug and device companies to doctors and teaching hospitals.

The total in 2016 was more than $8bn. More than 630,000 physicians had payment records.

For example, Purdue Pharma - which makes OxyContin, a popular opioid painkiller - made almost 80,000 transactions in 2016, worth more than $7m in total.
In 2016, a study looked at the link between doctors, the free meals they received from drug companies, and the medication they prescribed.

The study found receiving free meals was "associated with an increased rate of prescribing the promoted brand-name medication".

Pharmaceutical companies say their reps are merely sharing information with doctors. But Professor Humphreys says there is a "corrupting" influence.

"We need a pharma industry, it's not that it's wrong," he says. "But you can't let the fox guard the hen house.

"I would create completely clear blue water between the people that manufacture drugs and all the training and operation of the healthcare system."

Pharmaceutical companies also spend money on health care workers and organisations in other countries.

In the UK in 2016, companies gave £116m ($153m) to health workers and organisations for non-research and development in 2016.

But, although the UK figure is 7% higher than in 2015, it is less than 2% of the amount paid in the US.
Poor training
Dr Richard Frank is professor of health economics at Harvard Business School, and served in the Health Department from 2009 to 2016, during President Obama's administration.

He thinks medical training in the US has not been good enough.

"Physicians have received almost no training in pain management," he says.

"Until recently they have been under some pretty important misconceptions about how addictive various products are."

He adds: "A couple of years ago I testified before congress when I was in government. One of the representatives, before going into congress, was a thoracic surgeon.

"He noted that he had gotten almost no training in pain management - and what he had learned came entirely from the nursing staff he worked with."
Dr Frank says medical training isn't the only reason for America's opioid problem. "There's plenty of blame to go round," he says.

But his criticism is echoed by Professor Judith Feinberg.

"Doctors didn't learn anything about addiction at medical school," she says.

"That is now changing, but everyone who's a doctor already, didn't learn anything. I learned about opioid drugs in the part of pharmacology where we learned about anaesthesia.

"Probably the whole topic of anaesthesia-like drugs was two hours. People don't have much knowledge about opioids. There was no curriculum that includes addiction."

Bad science?
In 1980, Dr Hershel Jick wrote a short letter to the New England Journal of Medicine.

It said that "despite widespread use of narcotic drugs in hospitals, the development of addiction is rare in medical patients with no history of addiction".

The claim has been debunked, and the letter now carries an online warning note. But Dr Jick's letter had a big impact.

This year, Canadian researchers said the letter had been cited 600 times - usually to claim opioids weren't addictive.

In the late 1990s the Veterans Health Administration - which runs healthcare for military veterans - pushed for pain to be recognised as the "fifth vital sign".

This gave pain equal status with blood pressure, heart rate, respiratory rate, and temperature.

Then in 2001, the Joint Commission - which certifies almost 21,000 US health organisations and programmes - established standards for pain assessment and treatment.

In 2016, the JC released a statement that claimed that "everyone is looking for someone to blame" for the opioid problem. It insisted that its 2001 standards did not "require the use of drugs to manage a patient's pain".

But Professor Feinberg says the VHA and JC's moves meant doctors were under pressure to prescribe strong painkillers - such as opioids - when they may not have been necessary.

"By the time you reach middle age, it's a rare person who doesn't ache somewhere," she says.

She adds that - in a country where patients rate their doctors, and low ratings can affect doctors' earnings - the score can be influenced by whether patients receive opioids.

A culture of medication
Some Americans, says Professor Keith Humphreys from Stanford University, believe that life is "fixable".

"I'm 51," he says. "If I go to an American doctor and say 'Hey - I ran the marathon I used to run when I was 30, now I'm all sore, fix me', my doctor will probably try to fix me.

"If you do that in France the doctor would say 'It's life, have a glass of wine - what do you want from me?'"

In 2016, a study compared how Japanese and American doctors prescribed opioids. It found that Japanese doctors treated acute pain with opioids in 47% of cases - compared to 97% in the US.

"There is obviously a willingness, and a habit, of giving opioid pain relief that is not shared elsewhere," says Professor Feinberg.

"Other countries deal with pain in much healthier ways."
 
Why opioids are such an American problem
When it comes to taking opioids, the United States has the dubious honour of leading the world.

For every one million Americans, almost 50,000 doses of opioids are taken every day. That's four times the rate in the UK

========================

A recent BBC documentary visited Huntingdon, West Virginia. It was once a busy town with lots of manual workers. A lot of opioids were prescribed for pain relief. They were plentiful. Kids used to help themselves from parents medicine cabinets. Then the authorities tightened up on prescribing these drugs. So a black market emerged.

Maybe if they were not taking opioids they might be on other drugs though? I don’t know. Interesting programme but I have never been there so I don’t know if it is a fair reflection on the issue.
 
https://www.upi.com/Health_News/201...re-compared-to-other-countries/3621510800695/

U.S. seniors struggle more to pay for healthcare compared to other countries

By Steven Reinberg, HealthDay News | Nov. 15, 2017 at 9:57 PM

Access to insurance isn't an issue, because all Americans 65 and older are covered by Medicare. But America's seniors are still sicker than the elderly in other countries -- and are more likely to go without essential care because they can't afford it, according to the Commonwealth Fund study.

"Our Medicare is not as generous as comparable insurance in other countries," fund President Dr. David Blumenthal said during a media briefing on Tuesday.

In other countries, government health insurance is not restricted to the elderly, but covers everyone, he said.

The United States is complacent about the value and benefits associated with Medicare, even though it's a universal system, Blumenthal said.

"We do know that we, as a country, do tolerate higher levels of inequality. That's most evident in the fact that we underinvest, compared to other countries, in social services and overinvest, despite the lack of generosity of our insurance, in health care," he said.

Providing more social services to the elderly might help reduce the inequality of care, Blumenthal said.

For the study, researchers surveyed older adults about their health care. Participants came from Australia, Canada, France, Germany, the Netherlands, New Zealand, Norway, Sweden, Switzerland, the United Kingdom and the United States.

Almost one-quarter of U.S. seniors didn't go to a doctor in the past year when sick or they didn't get a recommended test or fill a prescription because they couldn't afford it.

In France, Norway, Sweden and the United Kingdom, no more than 5 percent of older adults skipped care because of costs, the researchers found.

In the United States, 22 percent of seniors spent $2,000 or more on out-of-pocket costs during the past year. The only country with higher out-of-pocket costs was Switzerland, with 31 percent spending more than $2,000 out of pocket.

Among all the other countries, less than 10 percent of seniors spent $2,000 or more, researchers found.

Among U.S. seniors, 25 percent said they worried about having the money to buy food or pay rent or bills for heat or electricity or medical care.

However, in France, the Netherlands, New Zealand, Norway, Switzerland, Sweden and the United Kingdom, only 10 percent or less said they had these concerns.

Seniors in many countries who suffered from several chronic health problems or had trouble with the basic activities of daily living reported being dissatisfied with the quality of their care.

For example, in Australia, 41 percent were somewhat or not at all satisfied, compared with 26 percent in the United States and 21 percent in Switzerland, the country rated the best in satisfaction.

Cost was also a concern for the sickest. In the United States, 31 percent skipped health care due to costs, compared with 2 percent in Sweden. Additionally, almost a third of the sickest U.S. seniors worried about having enough money for meals, rent or other bills, researchers reported.

The sickest seniors in other countries struggled as well, with about 25 percent of those in Australia and Germany also saying that they worried about paying for food, rent or other bills.

Many of these seniors also suffered from anxiety or depression, which can lead to poorer health and higher costs, Blumenthal said. Social isolation was also a problem faced by a number of seniors, particularly in European countries, the study found.

Access to care, especially after hours and on weekends, is another challenge seniors face.

Fifteen percent of U.S. seniors and 11 percent of Canadian seniors went to the emergency room for a condition that could have been treated by a regular doctor or clinic had one been available. In other countries, that figure is 8 percent or less, the researchers said.

U.S. doctors did well when it came to counseling seniors on diet, exercise and the risk of falling. Only doctors in Australia and France were similarly likely to discuss falls with their patients, the researchers found.

Dr. Ken Brummel-Smith is professor emeritus of geriatrics at Florida State University College of Medicine, and a spokesman for Physicians for a National Health Program. He said that providing more home care, social services and after-hour doctor and clinic times could help improve the care of the elderly.

"What older people really need are the support systems to manage themselves," Brummel-Smith said. "Everyone wants to live independently if possible, but we aren't set up to do that."

The report was published Nov. 15 in the journal Health Affairs.
 
This old drug was free. Now it's $109,500 a year
A bin of pill bottles. A drug used to help control a rare genetic illness called periodic paralysis has skyrocketed in price to $15,001 for 100 pills. (Heidi de Marco / Kaiser Health News)
Carolyn Y. JohnsonThe Washington Post


For four decades, Don Anderson of Seattle has been taking the same drug to help control the temporary bouts of immobility and muscle weakness caused by a rare genetic illness called periodic paralysis.

"It's like putting a 50-pound pack on your back and standing up at the dinner table," Anderson, 73, said. "It's like wearing lead shoes around all the time."

The drug Anderson has been taking all these years was originally approved in 1958 and used primarily to treat the eye disease glaucoma under the brand name Daranide, its price so unremarkable that he can't quite remember how much it cost at the pharmacy counter.

But the price has been on a roller coaster in recent years — zooming from a list price of $50 for a bottle of 100 pills in the early 2000s up to $13,650 in 2015, then plummeting back down to free, before skyrocketing back up to $15,001 after a new company, Strongbridge Biopharma, acquired the drug and relaunched it this spring.

"I'm constantly hearing that public pressure, public shaming will be sufficient to curb these bad actors in these industries. It often feels if you take your attention off of them, even for a second, they'll revert to these old ways," said Rachel Sachs, an associate law professor at Washington University in St. Louis. "It's just another example of how the system has some problems that need to be fixed."

The zigzagging trajectory of the price of Daranide, now known as Keveyis, shows just how much freedom drug companies have in pricing therapies — and what a big business opportunity it has become to sell drugs that treat extremely rare diseases. It also illustrates how well-intentioned policy to help spur the development of "orphan" drugs for very rare diseases can have unintended consequences.

Daranide was approved half a century ago, often used to treat glaucoma. Some people with the rare neuromuscular condition, periodic paralysis, began taking it off-label to help control their disease. With a list price of $50 for 100 pills in 2001, it wasn't a drug people remember as hard to obtain. (Pricing data was obtained from Truven Health Analytics, part of the IBM Watson Health business.)

In the early 2000s, Daranide was discontinued by Merck. Other glaucoma treatments were available, but a small group of periodic paralysis patients who had found that it controlled their symptoms better than other drugs were left with few options. They found ways to get the drug, importing it from Europe or South Korea. Anderson recalls the expense as about $250 or $300 a month.

In 2008, a family affected by the disease that also owned Taro Pharmaceutical Industries, a generic pharmaceutical company, decided to acquire Daranide from Merck. The goal was to make the drug reliably available to patients at a reasonable cost, Barrie Levitt, the former chairman of the company, and his son Jacob said in 2016.

Jacob suffers from periodic paralysis, and although he took a different drug to control his disease, he became aware from his work in the patient advocacy community that Daranide had been discontinued, forcing patients to look for alternatives or find sources to import. He said Taro spent less than half a million dollars to acquire the old drug.

But Taro was taken over by another generic-drug company, Sun Pharmaceutical Industries, in 2010. When the drug was approved in 2015 as a rare-disease treatment for periodic paralysis, it got a new name, Keveyis, and a new price: $13,650 for 100 pills. Although Keveyis is a decades-old drug, its federal approval for periodic paralysis came with a seven-year period of exclusive marketing rights.

In 2016, after the Washington Post asked questions about the high price of the drug, Sun Pharmaceutical said it would give the drug away free of charge. Sun said that the timing was coincidental and reflected the fact that the company had made less than $1 million on the drug — not enough to recoup the investment the company had made in marketing and patient support services.

But the story doesn't end there. Late last year, Sun agreed to sell Keveyis to a biotech company, Strongbridge Biopharma, for $8.5 million. In April, Strongbridge relaunched the drug — and in August, it raised the list price to $15,001 for a bottle of 100 pills.

In a presentation for investors, Strongbridge Biopharma estimated that the annual price of treatment for Keveyis would range from $109,500 to $219,000, depending on the dosage the patient took. One slide shows that the drug is covered broadly by insurers. In November, the company announced $2.5 million in sales last quarter — a 67% increase over the previous quarter's $1.5 million in sales. It said it would expand its sales force, and executives said in a conference call that the company's medical affairs team had met with 75 medical leaders and was training speakers to lead "peer-to-peer educational programs."

Lindsay Rocco, a spokeswoman for Strongbridge Biopharma, declined to answer questions about why the company increased the price of the drug this year. Instead, she issued a company statement saying that periodic paralysis affected only 5,000 people in the United States and the drug could provide benefits for those people.

"Strongbridge is committed to serving the unmet needs of the primary periodic paralysis and other rare-disease communities," the statement said.

Sun Pharmaceutical did not answer questions about why the company sold the drug after dropping the price to zero.

For patients, this is a double-edged sword. The company is selling the drug in the United States — a big improvement over the years when it wasn't available at all or had to be imported. And like nearly every drug company with a high-priced treatment, it offers patients support in navigating their insurance or help in paying for the drug.

Anderson, for example, pays nothing. Anderson said Keveyis is not on his insurer's list of covered drugs, but he gets it free without a co-pay. Providing help to patients in affording drugs by paying co-pays, helping overcome insurance barriers and even giving it away free of charge helps individual patients, and it insulates the drug company from criticism of its price.

"If your insurance doesn't cover it or if you don't have insurance, they will provide it free," said Anderson, who added he is grateful to the company. "I don't understand how much it's costing some insurance companies."

Strongbridge has launched free genetic testing for the disease and is expanding its sales force, moves that will help it identify more people who could become customers.

"It's either: People get ripped off, but they live, or they don't get ripped off, and they die. It's a little bit of a blackmail situation," said Jacob Levitt, who has watched the price increases with dismay. "The business model is a little bit taking advantage of making a cheap drug very expensive."

Levitt said that Strongbridge has given $250,000 to the patient organization that he heads, which helps support a conference. That's a valuable resource for patients, and he says it's an even more lucrative investment for the company, which can use the event to get in front of people with the disease and identify new patients.

"What they have done is found the mechanism for making a lot of money off of a drug they didn't have to make a lot of money off of," Levitt said.
 
its been a while so its time for a reminder of the hellworld we currently live in. go to the link and watch the news story:

http://www.wishtv.com/news/indiana-...utm_medium=social&utm_source=facebook_WISH-TV

14-year-old dying of cancer sells bracelets to survive




ANGOLA, Ind. (WANE) - A 14-year-old girl from Angola is dying from a rare form of cancer, but she has launched a bracelet fundraiser that will help her pay for treatment in hopes of making her life the best it can be.
Since Olivia Stoy's insurance won't pay for her bone marrow transplant, the cost of the procedure is $950,000. The hospital has made a deal with her that if she can pay up front, they'll only charge $350,000.
This is where designer Emily Bryan comes in. She is the owner of Emily Kai, an accessories business in Fort Wayne. She offered Stoy the opportunity to design a bracelet that she can sell on her website as a fundraiser for her treatment.
"Olivia is a very special girl," Bryan said. "She's very sweet, very sensible, very strong. She has always maintained a smile on her face through everything, even when I was at Riley Children's Hospital visiting her after a chemo treatment. It was very fun to see her excitement in designing."
Stoy realizes that if she doesn't get a bone marrow transplant next month, she's unlikely to survive t lymphoblastic lymphoma. She was diagnosed in May of 2016.
In the bracelet Bryan and Stoy have designed, called Lava Liv, are lava stones as strong as the 14-year-old's heart. Essential oils can be put on them that diffuse when you wear them.
The bracelet also has turquoise amazonite, bamboo coral stone, moonstones and a gold band that represents childhood cancer.
Stoy is confident they can reach the $350,000 goal with the bracelet sale, GoFundMe campaign and live part fundraisers they're hosting.
"I know that we'll reach it and I'm just so thankful for what everyone's doing," Stoy said. "I'm looking forward to just being more active and just getting back to the life that I had."
A life of softball, basketball, bike rides and family fun. One where she can continue raising her voice for cancer's cure.
"I hope that everyone that gets a bracelet enjoys it and feels strong and confident while wearing it," she said.
The bracelets are available for sale now on the Emily Kai website. There's also a GoFundMe campaign for those that simply want to donate money.
 
here's another gem:

The Strategic Lies of Oncologists
Is it ethical to break cost-controlling rules for a patient’s benefit?

ImageBy Susan Gubar


“We’ll have to invent symptoms,” the doctor said. Since this physician was a paragon of integrity, the patient gasped. With what words could she thank the doctor for such a breach of insurance rules?
Many have fulminated against oncologists who lie to patients about their prognoses, but sometimes cancer doctors lie for or with patients to improve our chances of survival.
Here’s the back story in this case. The patient, a woman in her early 50s, was given a diagnosis of endometrial cancer. After three infusions of chemo, she was supposed to start radiation, but imaging for it detected tumor growth. In other words, her disease was so malevolent that malignancy progressed during treatment. Yet physicians successfully altered the regimen, which she weathered. While some women with gynecologic cancer can use the CA125 blood test as a marker for recurrence, for others it does not work at all; they need scans. This patient is in that category, so she and her oncologist agreed to rely on a CT scan every nine months.
However, the insurance company refused to pre-certify the patient’s scan on the grounds that she had no symptoms of recurrence. Both she and her oncologist were baffled. Three specialists had warned that her cancer would probably return. Umpteen forms, filled out and submitted, failed to change the verdict; the oncologist fumed at insurance representatives on the phone, but to no avail. The doctor then coached my friend to fabricate cramping or bloating — symptoms that the insurance company might see as justification for the scan.
“A shell game,” she tells me, suspecting that her doctor must hate the lie as much as she does: “How humiliating for this consummate professional.”
My friend’s account reminds me of a youthful colleague with a family history of lethal colon cancer. His doctor made up blood in his stool to obtain insurance coverage for a colonoscopy. Precancerous polyps, found and removed, justified future surveillance.

What does the scant literature on the phenomenon of falsification tell us? A 1999 study, “Lying for Patients: Physician Deception of Third-Party Payers,” argues that it has characterized medicine, inside and outside cancer care, for some time. The authors document doctors’ willingness to dissemble in areas ranging from coronary bypass surgery to mammography screening.
“Many physicians sanction the use of deception to secure third-party payers’ approval of medically indicated care,” they wrote.
Physician subterfuge, the article concludes, reflects friction between “the traditional ethics of patient advocacy and the new ethic of cost control that restricts patient and physician choice in the use of limited resources.”
https://mobile.nytimes.com/2018/06/...geoCountry=US&blockId=signature-journalism-vi
Is it ethical to break cost-controlling rules for a patient’s benefit? At a fork in the road, the doctor must make a decision worthy of the Greek heroine Antigone. Should the patient’s best interest be paramount or the requirements of the system? Distress over the conflict between lawbreaking patient advocacy and law-abiding cost control intensifies with a life-threatening disease.
Dr. Rick Boulay, a gynecologic oncologist, describes the “peer-to-peer” phone consultation that constitutes the final step in the process of trying to get services covered for patients with metastatic disease. He recounts prescribing and defending a (more expensive) PET scan because an earlier CT had produced a false negative. Denial of coverage leads Dr. Boulay to conclude that his patient “may pay with her life for the insurance doc’s inability to look beyond policy.”
Not wanting patients to pay with their lives, how many physicians break or bend health care regulations in order to gain access to reimbursement and therefore to care? For without coverage of pricey drugs or procedures, most patients cannot afford them.
“You will never find it publicly discussed, but it happens; in unique situations, the rules need to be tweaked,” one oncologist-acquaintance confided on the condition of anonymity (because of the fines and sentences associated with insurance fraud). While contending with the mounting burden of electronic medical billing, physicians may encounter problems with the financial gatekeepers of insurance companies. Denials of coverage are made by insurance doctors who may not be specialists or, in some circumstances, vigilant adjudicators.
Earlier this year the former medical director of Aetna for Southern California admitted under oath that he did not review patients’ medical records before approving or denying appeals for insurance coverage. Renata Louwers, the widow of a bladder cancer patient, was especially outraged at this revelation because of the hours she spent on hold as insurers refused to pay for an off-label drug that shrank her husband’s cancer; the couple paid for it themselves until they won an appeal.
Insurers use the periodically updated National Comprehensive Cancer Network Guidelines to determine coverage for a specific regimen for a specific type of cancer. “If the prescribing doctor chooses to go outside” the list, my oncologist-informant explained, “the plan is often delayed or denied.” The network has not yet established detailed guidelines for some of the newest and most expensive targeted therapies. Delays in cancer treatment can be as deadly as denials.
Skyrocketing health care expenses certainly require regulations, most of us realize. And unfortunately oncologists have been known to put money in their own pockets by over-testing and over-treating in practices that do not help patients but could bankrupt our society.
The solution? The oncologist I spoke with suggested that partnerships between clinical care providers and insurance providers could prioritize patients’ well-being while keeping costs as low as possible. The authors of “Lying for Patients” argue that “Alternatives to deception include broadening existing appeal processes on behalf of individuals and political advocacy for health care reform.”
That professionals in the arduous field of oncology feel tempted to lie — in order to care for their patients — must take a psychological toll. Lying may finesse the system for the good of one, but it does not change it for the good of all.
The pressure on the system will only increase as detection tools generate predictions of cancer and genetic analyses produce personalized treatment plans. To facilitate prevention and to obtain proper care, insurance protocols must be made more flexible. Oncologists need to be free — without worrying that they will harm their patients — to speak truth to power.
Susan Gubar, who has been dealing with ovarian cancer since 2008, is distinguished emerita professor of English at Indiana University.
 
Rambo said:
here's another gem:

The Strategic Lies of Oncologists
Is it ethical to break cost-controlling rules for a patient’s benefit?

ImageBy Susan Gubar


“We’ll have to invent symptoms,” the doctor said. Since this physician was a paragon of integrity, the patient gasped. With what words could she thank the doctor for such a breach of insurance rules?
Many have fulminated against oncologists who lie to patients about their prognoses, but sometimes cancer doctors lie for or with patients to improve our chances of survival.
Here’s the back story in this case. The patient, a woman in her early 50s, was given a diagnosis of endometrial cancer. After three infusions of chemo, she was supposed to start radiation, but imaging for it detected tumor growth. In other words, her disease was so malevolent that malignancy progressed during treatment. Yet physicians successfully altered the regimen, which she weathered. While some women with gynecologic cancer can use the CA125 blood test as a marker for recurrence, for others it does not work at all; they need scans. This patient is in that category, so she and her oncologist agreed to rely on a CT scan every nine months.
However, the insurance company refused to pre-certify the patient’s scan on the grounds that she had no symptoms of recurrence. Both she and her oncologist were baffled. Three specialists had warned that her cancer would probably return. Umpteen forms, filled out and submitted, failed to change the verdict; the oncologist fumed at insurance representatives on the phone, but to no avail. The doctor then coached my friend to fabricate cramping or bloating — symptoms that the insurance company might see as justification for the scan.
“A shell game,” she tells me, suspecting that her doctor must hate the lie as much as she does: “How humiliating for this consummate professional.”
My friend’s account reminds me of a youthful colleague with a family history of lethal colon cancer. His doctor made up blood in his stool to obtain insurance coverage for a colonoscopy. Precancerous polyps, found and removed, justified future surveillance.

What does the scant literature on the phenomenon of falsification tell us? A 1999 study, “Lying for Patients: Physician Deception of Third-Party Payers,” argues that it has characterized medicine, inside and outside cancer care, for some time. The authors document doctors’ willingness to dissemble in areas ranging from coronary bypass surgery to mammography screening.
“Many physicians sanction the use of deception to secure third-party payers’ approval of medically indicated care,” they wrote.
Physician subterfuge, the article concludes, reflects friction between “the traditional ethics of patient advocacy and the new ethic of cost control that restricts patient and physician choice in the use of limited resources.”
Is it ethical to break cost-controlling rules for a patient’s benefit? At a fork in the road, the doctor must make a decision worthy of the Greek heroine Antigone. Should the patient’s best interest be paramount or the requirements of the system? Distress over the conflict between lawbreaking patient advocacy and law-abiding cost control intensifies with a life-threatening disease.
Dr. Rick Boulay, a gynecologic oncologist, describes the “peer-to-peer” phone consultation that constitutes the final step in the process of trying to get services covered for patients with metastatic disease. He recounts prescribing and defending a (more expensive) PET scan because an earlier CT had produced a false negative. Denial of coverage leads Dr. Boulay to conclude that his patient “may pay with her life for the insurance doc’s inability to look beyond policy.”
Not wanting patients to pay with their lives, how many physicians break or bend health care regulations in order to gain access to reimbursement and therefore to care? For without coverage of pricey drugs or procedures, most patients cannot afford them.
“You will never find it publicly discussed, but it happens; in unique situations, the rules need to be tweaked,” one oncologist-acquaintance confided on the condition of anonymity (because of the fines and sentences associated with insurance fraud). While contending with the mounting burden of electronic medical billing, physicians may encounter problems with the financial gatekeepers of insurance companies. Denials of coverage are made by insurance doctors who may not be specialists or, in some circumstances, vigilant adjudicators.
Earlier this year the former medical director of Aetna for Southern California admitted under oath that he did not review patients’ medical records before approving or denying appeals for insurance coverage. Renata Louwers, the widow of a bladder cancer patient, was especially outraged at this revelation because of the hours she spent on hold as insurers refused to pay for an off-label drug that shrank her husband’s cancer; the couple paid for it themselves until they won an appeal.
Insurers use the periodically updated National Comprehensive Cancer Network Guidelines to determine coverage for a specific regimen for a specific type of cancer. “If the prescribing doctor chooses to go outside” the list, my oncologist-informant explained, “the plan is often delayed or denied.” The network has not yet established detailed guidelines for some of the newest and most expensive targeted therapies. Delays in cancer treatment can be as deadly as denials.
Skyrocketing health care expenses certainly require regulations, most of us realize. And unfortunately oncologists have been known to put money in their own pockets by over-testing and over-treating in practices that do not help patients but could bankrupt our society.
The solution? The oncologist I spoke with suggested that partnerships between clinical care providers and insurance providers could prioritize patients’ well-being while keeping costs as low as possible. The authors of “Lying for Patients” argue that “Alternatives to deception include broadening existing appeal processes on behalf of individuals and political advocacy for health care reform.”
That professionals in the arduous field of oncology feel tempted to lie — in order to care for their patients — must take a psychological toll. Lying may finesse the system for the good of one, but it does not change it for the good of all.
The pressure on the system will only increase as detection tools generate predictions of cancer and genetic analyses produce personalized treatment plans. To facilitate prevention and to obtain proper care, insurance protocols must be made more flexible. Oncologists need to be free — without worrying that they will harm their patients — to speak truth to power.
Susan Gubar, who has been dealing with ovarian cancer since 2008, is distinguished emerita professor of English at Indiana University.
Click to expand...

You think America's system is bad, just wait to you experience the UK's rationed Socialist system.....the latest scandal is yet another example of a system that protects it's intellegenstia and immaculate medical elite at all costs.
 
A friend of mine sent me this. In the next post is his experience this week here in Melbourne:
Post-apocalyptic life in American health care
TL;DR:
  • Much of my time for the past year has been spent navigating the medical maze on behalf of my mother, who has dementia.
  • I observe that American health care organizations can no longer operate systematically, so participants are forced to act in the communal mode, as if in the pre-modern world.
  • Health care is one leading edge of a general breakdown in systematicity—while, at the same time, employing sophisticated systematic technologies.
  • Communal-mode interpersonal skills may become increasingly important to life success—not less, as techies hope.
  • For complex health care problems, I recommend hiring a consultant to provide administrative (not medical!) guidance.
Epistemic status: impressionistic blogging during a dazed lull between an oncologist and an MRI. No attempt to validate with statistical data or knowledgeable sources.
No system
My mother’s mild dementia began accelerating rapidly a year ago. I’ve been picking up pieces of her life as she drops them. That has grown from a part-time job to a full-time job. In the past month, as she’s developed unrelated serious medical issues, it’s become a way-more-than-full-time job..................................
My mother’s mild dementia began accelerating rapidly a year ago. I’ve been picking up pieces of her life as she drops them. That has grown from a part-time job to a full-time job. In the past month, as she’s developed unrelated serious medical issues, it’s become a way-more-than-full-time job.

The most time-consuming aspect has been coordinating the dozens of different institutions involved in her care. I had read that the biggest failing of the American health care system is its fragmentation; I’ve now spent hundreds of hours observing that first-hand.
There is, in fact, no system. There are systems, but mostly they don’t talk to each other. I have to do that.

It’s been fascinating watching people working in hospitals and medical offices trying and failing to communicate with each other. I’ll tell one story, and then explain a pattern. This is the most dramatic instance I’ve encountered so far, but is typical in form.
The short version is that at least seven experts spent roughly ten full-time days trying to find out a basic fact about my mother’s insurance, and finally failed. Meanwhile, many thousands of dollars were wasted on unnecessary hospitalization.
This is a stark example of medical cost disease, but the post is not about that. It’s about how institutions fail to talk to each other—and what that implies about our future.

(If the story gets boring, you can skip ahead to my interpretation of the pattern.)
My mother went into the hospital a month ago with severe pain in her hip. (It’s still undiagnosed.) After two days, she was medically ready for discharge from the hospital: whatever the pain was, it wasn’t one they could help with. Instead, she should be sent to a “skilled nursing facility” (SNF) where she’d get “physical therapy,” i.e. leg exercises.

For a SNF to agree to take her, they had to get confirmation from an insurance company that insurance would cover her stay. She has two kinds of health insurance, Medicare plus coverage through a private insurer (Anthem). Which would cover her? Or both, or neither?
SNFs have admissions officers, whose full-time job is to answer this question. Two different SNFs started working on the problem. I talked with the admissions people every day. Both claimed to be working on it more-or-less full-time. The hospital wanted to free up my mother’s bed, so their insurance person was also working on it.

Days passed. The hospital doctor on rounds said “Well, this is typical, especially with Anthem. It’s costing them several thousand dollars a day to keep her here, versus a few hundred dollars a day in a SNF, but it might take a week for them to figure out which local SNF they cover. Don’t worry, they’ll sort it out eventually.”

Meanwhile, I learned that Anthem and Medicare were confused about their relationship. (As far as I can tell, this was a coincidence and not the underlying problem, although I’m still not sure.) Medicare believed that my mother (who retired in 1997) is employed and therefore ineligible. Her Anthem coverage is through her former employer.

I talked with her ex-employer’s benefits person (whose full-time job is understanding insurance, pretty much). She looked into it and said she couldn’t understand what was going on. She called the company’s outside insurance consultant. He couldn’t understand what was going on. He called people he knew at Medicare and Anthem. He said that they couldn’t understand it either, but that multiple people in both organizations were working on straightening it out.

A week later, I called Medicare to verify that it worked. The surprisingly competent customer service person looked up my mother’s info and said: “This is really weird… I don’t know what’s going on… there was a record that said Anthem is primary. And then on November 16th, there’s a note that said it’s deleted, and Medicare is primary. But then there’s an update on the 18th that says Anthem is primary. But obviously since your mother is 84 she’s not employed, so Medicare should be primary… I’ll delete the record again…”
After three days of trying, one of the SNFs gave up. I talked to the admissions dude there. I’ll call him Paul. He was smart and friendly, and he was willing to explain:
My full-time job for ten years has been understanding how to get insurance to pay us, and I have no idea how the system works. Even if I somehow learned how it works, it changes completely every year, and I would have to start over. But at most of the insurance companies I know people who can sometimes make things happen, so I call them up, and then they try to figure out how it works. But Anthem… I spent hours and hours on hold, and in phone trees, getting transferred from one department to another, and eventually back to where I started. The most clueful-sounding person I could find sent me to a web site that just says ‘This program is not implemented yet.’ Does ‘program’ mean software, or does it mean some project they haven’t got going?​
​
Hospitals are bad places that make you ill; you don’t want to spend any more time there than you have to. On day six, I said “if she doesn’t go to a SNF today, I’m taking her home—the risk of her dying there seems less now than the risk of her dying here.” That got results: the other SNF agreed to take her “on spec.” Their admissions person was reasonably confident that either Anthem or Medicare would pay, even though neither was willing to say either yes or no ahead of time.
The SNF called me to tell me they needed my mother’s records from the hospital. Well, what do you want me to do about that? We need you to call the hospital and ask them to fax us the records. “Fax”? Why not send clay tablets in wicker baskets on the back of a donkey?

No interface
To ship a package by FedEx, you don’t need to call someone who knows someone who knows someone. You go to a web site, put in some numbers, it gives you back some numbers, you put them on the envelope, drop it in a box, and it appears at a farmhouse on an island in Lapland the next day.

If Amazon sends you the wrong type of cable adapter, you don’t have to call them up and try to act pathetic and virtuous in order to convince someone that you need and deserve a refund because your poor mother is so ill. You go to a web site and push a button.
FedEx and Amazon have systematic interfaces. They are transparent on the outside, and black boxes on the inside. You don’t have to know anything about how they operate in order to use them.

Health care organizations are—at best—the opposite. They may run on systems internally, but the interface is opaque. There’s no defined way to get them to do something.
This is not their fault.
No fault
I was trying to get my mother into a SNF—but all I could do was talk to Paul, who couldn’t say yes or no. It wasn’t his fault. He was trying to talk to people at Anthem, who couldn’t say yes or no. Was that their fault?

Just speculating, I imagine they are supposed to apply 1600 pages of rules for what’s covered in what situation. And the rules are vague and conflicting and change constantly, and who can read 1600 pages of rules anyway? So eventually someone has to make up a yes-or-no answer on the basis of what seems more-or-less reasonable. Whoever it is could get blamed if someone higher up later decides that was “wrong” based on their interpretation of the rules, so it’s better to pass the buck.

Are the confused rules Anthem’s fault? I imagine that the 1600 pages try to reconcile federal, state, and local legislation, plus the rules of three federal regulatory agencies, nine state agencies, and fifteen local agencies. All those are vague and conflicting and constantly changing, but Anthem’s rule-writing department does their best. They call the agencies to try to find out what the regulations are supposed to mean, and they spend hours on hold, are transferred from one official to another and back, and eventually get directed to a .gov web site that says “program not implemented yet.” Then they make something up, and hope that when the government sues Anthem, they don’t get blamed for it personally.

I imagine people working in legislative offices and regulatory agencies find themselves in a similar position.
In this maze, even competent people with good intentions cannot act systematically. Their work depends on coordinating with other institutions that have no systematic interface.
Traditional life in the ruins of systematicity
It’s like one those post-apocalyptic science fiction novels whose characters hunt wild boars with spears in the ruins of a modern city. Surrounded by machines no one understands any longer, they have reverted to primitive technology.
Except it’s in reverse. Hospitals can still operate modern material technologies (like an MRI) just fine. It’s social technologies that have broken down and reverted to a medieval level.

Systematic social relationships involve formally-defined roles and responsibilities. That is, “professionalism.” But across medical organizations, there are none. Who do you call at Anthem to find out if they’ll cover an out-of-state SNF stay? No one knows.
What do you do when systematicity breaks down? You revert to what I’ve described as the “communal mode” or “choiceless mode.” That is, “pre-modern,” or “traditional” ways of being.

Working in a medical office is like living in a pre-modern town. It’s all about knowing someone who knows someone who knows someone who can get something done. Several times, I’ve taken my mother to a doctor who said something like: “She needs lymphedema treatment, and the only lymphedema clinic around here is booked months in advance, but I know someone there, and I think I can get her in next week.” Or, “The pathology report on this biopsy is only one sentence, and it’s unsigned. The hospital that faxed it to me doesn’t know who did it. I need details, so I called all the pathologists I know, and none of them admit to writing it, so we are going to need to do a new biopsy.”

But at the same time, each clinic does have an electronic patient records management system, which does work some of the time. And there areprofessional relationships with defined roles that operate effectively within the building.
I suspect increasing “patchiness” of systems may be typical of our post-systematic atomized era. Understanding the medical case may help predict the texture of cultural and social life as atomization proceeds.

A central research topic in ethnomethodology is the relationship between formal rationality (such as an insurance company’s 1600 pages of unworkable rules) and “mere reasonableness,” which is what people mostly use to get a job done. The disjunction between electronic patient records and calling around town to try to find out who wrote a biopsy report that arrived by fax seems sufficiently extreme that it may produce a qualitatively new way of being.
I would like to ask:
  • How does health care continue to function at all?
  • Can it continue to function at all?
  • How do people within the ex-system navigate a world that mashes up high-tech infrastructure that only sometimes works with pre-modern social relationships across organizations?
  • How do they understand this contrast? How do they cope personally?1
  • What can we do about it?
Maybe an ethnomethodological understanding of how health care organizations operate in practice could make the systems work incrementally better. Maybe an enlightened COO could incorporate the view that the systems and reality are only vaguely related. But… it may be impossible to improve individual organizations.
No local fix
It’s obvious how to fix health care. Just make everything run systematically, like FedEx or Amazon. There are no technical or business obstacles to this. Anyone who understands IT and/or business can see how to do it.2

Back-of-envelope calculations say a working health care system would deliver dramatically better quality at 10-20% of the current cost.
Health care is notionally a profit-driven free market. This looks like an easy opportunity to make trillions of dollars by making the world better for everyone. Why doesn’t someone do that?

It appears that 73% of the labor cost of a health care organization is spent on trying to communicate with other health care organizations that have no defined interface.3 Patrick Collison has suggested calling this pattern “Leibenstein’s Inefficiency Disease,” by analogy to Baumol’s Cost Disease. An organization can’t improve the 73% by much on its own; that inefficiency is forced on it by the environment it operates in.

Instead, organizations in sectors afflicted with inefficiency disease try to push their own administrative work outside. Both out into other organizations, and—more visibly—they force it onto you, the customer. It’s your job to fill out forms they could have done more efficiently themselves. When they screw up, you have to try to fix it. This negative externality could be called “paperwork pollution,” by analogy with negative externalities of smokestack industries.

Standardizing an interface between health care providers and insurance companies would be a huge win. No matter how badly designed, it would be better than the current mess, and save several percent of US GDP. That would need cooperation from most of the major players in the industry. Other industries manage that routinely: machine screws and futures contracts come in standard sizes, without which manufacturing and finance would be as inefficient as health care. The need for a standard insurer/provider interface is obvious. Since it’s lacking, I imagine some powerful group extracts enormous rents from the inefficiency. I know nothing about that, so I won’t speculate.

You will need village life skills
Perhaps American health care is a bellwether model for the future of other aspects of life in the post-systemic world? A pattern that occurs in many other sectors: as systems fail, people fall back on innate communal logic. Politics and the media are obvious current examples.

The hope of the tech industry is that “software is eating the world,” as Marc Andreessen put it in 2011. That is, we’re FedEx-izing every aspect of the economy: making it radically more efficient and reliable, using well-designed IT-supported systematic business processes.
In that world, systematic-mode skills (especially programming and finance) will be ever more valuable. Hooray! We will create a utopia for all, in which (for once) those of us with high-functioning autism get properly rewarded.

In 2017, software is conspicuously not eating the cost-disease economic sectors: health care, education, housing, government. They are being eaten—by communal mode tribalism.
In 2017, tribalists are threatening to eat the tech industry.
There’s a possible future in which all systems fall to tribalism. Then everyone dies, because tribal signaling does not deliver electric power. In another possible future, we create a meta-systematic society that addresses the inherent defects of both tribalism and systematicity. (I discussed both these possibilities tangentially in “A bridge to meta-rationality vs. civilizational collapse.” I hope to write more soon.)

In the short run, more likely, current trends will continue. Additional aspects of life will increasingly revert to the communal mode, but some critical systems will fend off the barbarians and limp along well enough to keep us alive.
In that world, people skills will be ever more valuable. Surviving and thriving in 2037 may depend mainly on who you can charm, who you know, and whether they owe you favors.

Techies take note.
You might consider working in a medical office, to get some practice.

Hire a consultant
Some more-serious, practical advice:
If you find yourself in a situation like mine, hire an independent health care administration consultant. Their job is to know administrative people inside organizations who can get stuff done. They also know what can be gotten done, which is unknowable to the public. They can also deal with inscrutable paperwork and organizational screw-ups.

Hiring someone became imperative for me when coordinating my mother’s care got to be a way-more-than-full-time job. (In retrospect, I wish I had done that months earlier.)

It could also be worthwhile in less critical cases, if no one in the family can take enough time off from work, or in which you’d simply rather pay someone else to clean up after a hospital’s paperwork pollution.
This role has developed only recently, as systems have broken down. There’s not yet a standardized term; “health care advocate” is one among several.

Mine specializes in gerontology and dementia. Others specialize in other disease areas; or in other aspects of the administrative nightmare, such as sorting out bogus hospital bills, which frequently include fraudulent additions.
They are not inexpensive (mine charges $150/hour), so not an option for everyone.
There are good and not-so-good advocates. I spoke with several before hiring one. Some were clearly clueless; the one I hired last month has seemed consistently competent.

Since they recommend particular providers, there is an inherent principal-agent problem. Ask if they get any compensation from services they recommend. Take their recommendations with a grain of salt in any case.
 
Heres what my friend experienced this week in Melbourne as a contrast.

---
But I’d like to offer an observation on how we still get some things right in Australia on a quietly day to day level.

A few days ago I fractured three ribs (Long story involving shetland ponies, a former SE Asian Minister for Infrastructure, cosplay hang gliding and a 750ml jar of home-made mustard - don’t ask) and was driven to the Alfred Hospital’s emergency department at 9.30am, squirming in pain and stifling shrieks at every gravitational shift.

Within half an hour, I was admitted, X-rayed, EKGed, bloodworked and in a Short Stay Unit bed with heavy duty painkillers kicking in.

Over the rest of the day, I watched TV and grazed the net in a warm chemical fog as highly professional, empathetic and merry nurses, doctors, technicians, physiotherapists and orderlies (“Hi, I’m your coughing coach.”) checked, probed and questioned me, confirmed the diagnosis and developed pain management and recovery plans.

By 7pm I was discharged, feeling no pain and with a clear road map for getting better (broken ribs heal themselves but it can be very slow and painful if you don’t do it right) and a cheerfully sardonic “Hope we don’t see you again.”

Bureaucratical processes/paperwork: “Have you got your Medicare Card? OK, thanks.”

Cost: $52.30 for a fortnight’s worth of prescription painkillers.

World-leading medical facility with great staff quickly and effectively sorting you out for the price of a tiny annual Medicare levy: Priceless.

My only complaint is that the lamb rogan josh for lunch was rather bland
 
Pimpernel Smith said:
You think America's system is bad, just wait to you experience the UK's rationed Socialist system.....the latest scandal is yet another example of a system that protects it's intellegenstia and immaculate medical elite at all costs.
Click to expand...
What scandal?
 
Rambo said:
What scandal?
Click to expand...

The one where 650 patients were wheeled into the ward of death and given lethal doses of diamorphine to get rid of them. All part and parcel of the deified NHS, where treatment is carefully rationed, your access to life saving drugs is no more than a lottery and if you're the wrong side of 65 they'll practice cold blooded murder rather than you infringe on their precious time and resources demanding treatment:

http://www.dailymail.co.uk/news/art...uiry-hundreds-hospital-painkiller-deaths.html
 
Pimpernel Smith said:
The one where 650 patients were wheeled into the ward of death and given lethal doses of diamorphine to get rid of them. All part and parcel of the deified NHS, where treatment is carefully rationed, your access to life saving drugs is no more than a lottery and if you're the wrong side of 65 they'll practice cold blooded murder rather than you infringe on their precious time and resources demanding treatment:

http://www.dailymail.co.uk/news/art...uiry-hundreds-hospital-painkiller-deaths.html
Click to expand...

That is a case of the old boy network covering up for colleagues. Or maybe even closer to killer doctor Harold Shipman.

It has got no relevance whatsoever to whether the health system is private or public.

Institutionalised murder is a flight of fancy.
 
Kingstonian said:
That is a case of the old boy network covering up for colleagues. Or maybe even closer to killer doctor Harold Shipman.

It has got no relevance whatsoever to whether the health system is private or public.

Institutionalised murder is a flight of fancy.
Click to expand...

It has everything to do with it. These crimes are becoming a pattern, the structure of the NHS is the fatal flaw. A private health service would not tolerate such destruction of human life.
 
https://www.boston25news.com/news/w...ng-into-gap-on-orange-line-platform/781801104

Woman saved by bystanders after falling into gap on Orange Line platform

BOSTON - A group of commuters have banded together to help free a woman whose leg became trapped between a subway train and platform in Boston.

The 45-year-old woman told police she slipped as she was getting off the train at the Massachusetts Avenue Station around 5:30 p.m. Friday, and her leg became stuck in the gap.

Video released by the Massachusetts Bay Transportation Authority Monday shows a group of passengers rushing to her aid and pushing the train away from the platform until she was free.

The Boston Globe reports the woman begged bystanders not to call an ambulance because of the cost, despite her suffering a severe laceration on her leg.

She has been hospitalized at Boston Medical Center for treatment.

*emphasis mine
 
https://www.scmp.com/news/world/uni...ancisco-hospital-treated-korean-tourists-baby

San Francisco hospital treated Korean tourists’ baby with a nap and a bottle of milk formula. The bill was US$18,000

The case of baby Park Jeong-whan, who bumped his head, highlights the growing tendency of US hospitals to charge ‘trauma response fees’ that go into effect regardless of the eventual treatment and run as high as US$51,000

PUBLISHED : Friday, 06 July, 2018, 9:45am

On the first morning of Jang Yeo-im’s vacation to San Francisco in 2016, her eight-month-old son, Park Jeong-whan, fell off the bed in the family’s hotel room and hit his head. There was no blood, but the baby was inconsolable. Jang and her husband worried he might have an injury they couldn’t see, so they called 911, and an ambulance took the family – tourists from South Korea – to Zuckerberg San Francisco General Hospital (SFGH). The doctors at the hospital quickly determined that baby Jeong-whan was fine – just a little bruising on his nose and forehead. He took a short nap in his mother’s arms, drank some infant formula and was discharged a few hours later with a clean bill of health. The family continued their vacation, and the incident was quickly forgotten. Chinese tourists in US told to beware of shootings, expensive medical care. Two years later, the bill finally arrived at their home: They owed the hospital US$18,836 for a visit lasting three hours and 22 minutes, the bulk of which was for a mysterious fee for US$15,666 labelled “trauma activation,” also known as “a trauma response fee.


“It’s a huge amount of money for my family,” said Jang, whose family had travel insurance that would cover only US$5,000. “If my baby got special treatment, OK. That would be OK. But he didn’t. So why should I have to pay the bill? They did nothing for my son.”
American hospital bills are today littered with multiplying fees, many of which don’t even exist in other countries: fees for blood draws, fees for checking the blood oxygen level with a skin probe, fees for putting on a cast, minute-by-minute fees for lying in the recovery room.

It’s a huge amount of money for my family. If my baby got special treatment, OK. That would be OK. But he didn’t. So why should I have to pay the bill? But perhaps the pinnacle is the “trauma fee,” in part because it often runs more than US$10,000 and in part because it seems to be applied so arbitrarily. A trauma fee is the price a trauma centre charges when it activates and assembles a team of medical professionals that can meet a patient with potentially serious injuries in the ER. It is billed on top of the hospital’s emergency room physician charge and procedures, equipment and facility fees. Emergency room bills collected by Vox and Kaiser Health News, a US national health policy news service, show that trauma fees are expensive and vary widely from one hospital to another. Charges ranged from US$1,112 at a hospital in Missouri to US$50,659 at a hospital in California, according to Medliminal, a company that helps insurers and employers around the country identify medical billing errors. “It’s like the Wild West. Any trauma centre can decide what their activation fee is,” says Dr Renee Hsia, director of health policy studies in the emergency medicine department at the University of California-San Francisco.

Hsia is also an emergency medicine doctor at Zuckerberg San Francisco General Hospital, but was not involved in the care of the patients discussed in the story – and spoke about the fees generally. Comprehensive data from the Health Care Cost Institute shows that the average price that health insurers paid hospitals for trauma response (which is often lower than what the hospital charges) was US$3,968 in 2016. But hospitals in the lowest 10 per cent of prices received an average of US$725 – while hospitals in the most expensive 10 per cent were paid US$13,525. Data from Amino, a health cost transparency company, shows the same trend. On average, Medicare pays just US$957.50 for the fee. According to Medicare guidelines, the fee can be charged only when the patient receives at least 30 minutes of critical care provided by a trauma team – but hospitals do not appear to be following that rule when billing non-Medicare patients. At the turn of the century such fees didn’t even exist.
But today many insurers willingly pay them, albeit at negotiated rates for hospitals in their networks. Six insurers and industry groups declined to discuss the fees, and a spokeswoman for America’s Health Insurance Plans, the industry trade group, said, “We have not seen any concerning trends surrounding trauma centre fees.” Trauma centres argue that these fees are necessary to train and maintain a full roster of trauma doctors, from surgeons to anaesthesiologists, on-call and able to respond to medical emergencies at all times.
SFGH spokesman Brent Andrew defended the hospital’s fee of over US$15,000 even though the baby didn’t require those services.
“We are the trauma centre for a very large, very densely populated area. We deal with so many traumas in this city – car accidents, mass shootings, multiple vehicle collisions,” said Andrew. “It’s expensive to prepare for that.”
 
https://arstechnica.com/science/201...again-despite-backlash-from-public-lawmakers/

Pfizer raises prices on 100 drugs—again—despite backlash from public, lawmakers
Many Pfizer rivals vowed to limit such price hikes and Trump recently suggested cuts.
BETH MOLE - 7/3/2018, 12:35 PM
GettyImages-501415420-800x533.jpg

Enlarge / Pfizer's little, blue Viagra tablets get big price tag that have people seeing red.
Getty | Bloomberg
273
Despite public and political pressure, pharmaceutical giant Pfizer keeps raising the prices of its drugs—standing apart from some of its rivals who have vowed to rein in periodic price hiking.
Around 100 of Pfizer’s drugs got higher list prices this week, the Financial Times first reported. The affected drugs include big sellers, such as Lyrica pain capsules, Chantix smoking-cessation medication, Norvasc blood-pressure pills, and the lung-cancer treatment Xalkori.
The price hikes mark a second round of increases for Pfizer this year. While many of the price changes in the individual rounds hover at or under 10 percent—many at 9.4 percent—the hikes collectively boost many drugs’ prices by double-digit percentages for the year overall. For instance, Chantix’s price jumped nearly 17 percent this year; Pfizer gave it a 9.4 percent increase in January and another seven percent boost July 1, bringing the list price of a 56-tablet bottle to $429, the Wall Street Journal noted. Likewise, Pfizer’s erectile dysfunction drug Viagra saw a 9.4 percent increase July 1 after a similar hike in January. Those hikes bring the list price of a month’s supply to $2,211.
Such twice-a-year price increases of around 10 percent used to be commonplace in the US pharmaceutical industry. But notable, eye-popping hikes have made such bumps a flashpoint for consumers and lawmakers. For instance, public fury ignited at Martin Shkreli’s abrupt 5,000 percent price increase of an old, cheap anti-parasitic drug—one often given to babies and people with HIV/AIDS. And Mylan’s gradual 400 percent price increase for the live-saving EpiPen further enraged the public and Congressional committees.
In the aftermath, many—but not all—of Pfizer’s rivals pledged to raise prices just once a year and generally keep the hikes to under 10 percent. Moreover, President Donald Trump suggested on May 30 that the industry was poised to make “massive” voluntary price cuts in the coming weeks.
No such cuts have been announced, and Pfizer’s continued increases belie that notion. “The latest increases signal that it is ‘business as usual’ rather than the voluntary concessions that Trump indicated were coming,” Michael Rea, chief executive of Rx Savings Solutions, told the Financial Times.
In a statement, Pfizer addressed its price increases, saying:
The list price remains unchanged for the majority of our medicines. We are modifying prices for about 10 percent of our medicines, including some instances where we’re decreasing the price.​
Pfizer lowered the price of five products, with dips ranging from 16 to 44 percent, the Times noted.

https://arstechnica.com/science/201...te-backlash-from-public-lawmakers/?comments=1
 
InstaHate said:
Summary: East Asian family encounters American healthcare system, shocked when they get royally fucked.

http://www.foxnews.com/health/2018/...with-bottle-formula-gets-18g-bill-report.html
Click to expand...
Rambo said:
https://www.scmp.com/news/world/uni...ancisco-hospital-treated-korean-tourists-baby

San Francisco hospital treated Korean tourists’ baby with a nap and a bottle of milk formula. The bill was US$18,000

The case of baby Park Jeong-whan, who bumped his head, highlights the growing tendency of US hospitals to charge ‘trauma response fees’ that go into effect regardless of the eventual treatment and run as high as US$51,000

PUBLISHED : Friday, 06 July, 2018, 9:45am

On the first morning of Jang Yeo-im’s vacation to San Francisco in 2016, her eight-month-old son, Park Jeong-whan, fell off the bed in the family’s hotel room and hit his head. There was no blood, but the baby was inconsolable. Jang and her husband worried he might have an injury they couldn’t see, so they called 911, and an ambulance took the family – tourists from South Korea – to Zuckerberg San Francisco General Hospital (SFGH). The doctors at the hospital quickly determined that baby Jeong-whan was fine – just a little bruising on his nose and forehead. He took a short nap in his mother’s arms, drank some infant formula and was discharged a few hours later with a clean bill of health. The family continued their vacation, and the incident was quickly forgotten. Chinese tourists in US told to beware of shootings, expensive medical care. Two years later, the bill finally arrived at their home: They owed the hospital US$18,836 for a visit lasting three hours and 22 minutes, the bulk of which was for a mysterious fee for US$15,666 labelled “trauma activation,” also known as “a trauma response fee.


“It’s a huge amount of money for my family,” said Jang, whose family had travel insurance that would cover only US$5,000. “If my baby got special treatment, OK. That would be OK. But he didn’t. So why should I have to pay the bill? They did nothing for my son.”
American hospital bills are today littered with multiplying fees, many of which don’t even exist in other countries: fees for blood draws, fees for checking the blood oxygen level with a skin probe, fees for putting on a cast, minute-by-minute fees for lying in the recovery room.

It’s a huge amount of money for my family. If my baby got special treatment, OK. That would be OK. But he didn’t. So why should I have to pay the bill? But perhaps the pinnacle is the “trauma fee,” in part because it often runs more than US$10,000 and in part because it seems to be applied so arbitrarily. A trauma fee is the price a trauma centre charges when it activates and assembles a team of medical professionals that can meet a patient with potentially serious injuries in the ER. It is billed on top of the hospital’s emergency room physician charge and procedures, equipment and facility fees. Emergency room bills collected by Vox and Kaiser Health News, a US national health policy news service, show that trauma fees are expensive and vary widely from one hospital to another. Charges ranged from US$1,112 at a hospital in Missouri to US$50,659 at a hospital in California, according to Medliminal, a company that helps insurers and employers around the country identify medical billing errors. “It’s like the Wild West. Any trauma centre can decide what their activation fee is,” says Dr Renee Hsia, director of health policy studies in the emergency medicine department at the University of California-San Francisco.

Hsia is also an emergency medicine doctor at Zuckerberg San Francisco General Hospital, but was not involved in the care of the patients discussed in the story – and spoke about the fees generally. Comprehensive data from the Health Care Cost Institute shows that the average price that health insurers paid hospitals for trauma response (which is often lower than what the hospital charges) was US$3,968 in 2016. But hospitals in the lowest 10 per cent of prices received an average of US$725 – while hospitals in the most expensive 10 per cent were paid US$13,525. Data from Amino, a health cost transparency company, shows the same trend. On average, Medicare pays just US$957.50 for the fee. According to Medicare guidelines, the fee can be charged only when the patient receives at least 30 minutes of critical care provided by a trauma team – but hospitals do not appear to be following that rule when billing non-Medicare patients. At the turn of the century such fees didn’t even exist.
But today many insurers willingly pay them, albeit at negotiated rates for hospitals in their networks. Six insurers and industry groups declined to discuss the fees, and a spokeswoman for America’s Health Insurance Plans, the industry trade group, said, “We have not seen any concerning trends surrounding trauma centre fees.” Trauma centres argue that these fees are necessary to train and maintain a full roster of trauma doctors, from surgeons to anaesthesiologists, on-call and able to respond to medical emergencies at all times.
SFGH spokesman Brent Andrew defended the hospital’s fee of over US$15,000 even though the baby didn’t require those services.
“We are the trauma centre for a very large, very densely populated area. We deal with so many traumas in this city – car accidents, mass shootings, multiple vehicle collisions,” said Andrew. “It’s expensive to prepare for that.”
Click to expand...
o hai
 
https://www.beckershospitalreview.c...ls-account-for-1-in-3-gofundme-campaigns.html

Medical bills account for 1 in 3 GoFundMe campaigns
Written by Morgan Haefner


Fundraisers for medical bills and accompanying expenses account for a third of campaigns on GoFundMe, the crowdsourcing website's CEO Rob Solomon told MPR News.

The site has become a go-to option for individuals who need help paying their physicians. According to GoFundMe, the site hosts 250,000-plus medical campaigns each year, with more than $650 million raised across those campaigns.

Some examples of GoFundMe campaigns reviewed by MPR News include an uninsured man from Charleston, S.C., with prostate cancer who sought $50,000 to pay mounting bills. He has collected more than $85,000. In another instance, the family of a 3-year-old from Ft. Lauderdale, Fla., who is susceptible to bone breaks raised $30,000 of their $40,000 target.

Sara Collins, an economist with the Commonwealth Fund, said escalating copays and deductibles have left even insured Americans with unaffordable medical bills.

"We find that underinsured people are nearly as likely to report problems paying their medical bills as people who don't have any insurance and they also report not getting needed healthcare at rates that are nearly as high as those who are uninsured," she told MPR News. "So, it shouldn't be surprising that people are raising funds through crowdsourcing. But it really should be a deep concern for policy-makers and providers."
 
https://www.npr.org/sections/health.../insulins-high-cost-leads-to-lethal-rationing

Diabetic ketoacidosis is a terrible way to die. It's what happens when you don't have enough insulin. Your blood sugar gets so high that your blood becomes highly acidic, your cells dehydrate and your body stops functioning.

Diabetic ketoacidosis is how Nicole Smith-Holt lost her son. Three days before his payday. Because he couldn't afford his insulin.

"It shouldn't have happened," Smith-Holt says looking down at her son's death certificate on her dining room table in Richfield, Minn. "That cause of death of diabetic ketoacidosis should have never happened."




The price of insulin in the U.S. has more than doubled since 2012 alone. That's put the life-saving hormone out of reach for some people with diabetes, like Smith-Holt's son Alec Raeshawn Smith. It's left others scrambling for solutions to afford the one thing they need to live. I'm one of those scrambling.

Not enough time

Most people's bodies create insulin, which regulates the amount of sugar in the blood. The roughly 1.25 million of us in the U.S. with Type 1 diabeteshave to buy insulin at a pharmacy because our pancreases stopped producing it.

My first vial of insulin cost $24.56 in 2011, after insurance. Seven years later I pay more than $80. That's nothing compared to what Alec was up against when he turned 26 and aged off his mother's insurance plan.

Smith-Holt says she and Alec started reviewing his options in February 2017, three months before his birthday on May 20. Alec's pharmacist told him his diabetes supplies would cost $1,300 a month without insurance — most of that for insulin. His options with insurance weren't much better.

Alec's yearly salary as a restaurant manager was about $35,000. Too high to qualify for Medicaid, and, Smith-Holt says, too high to qualify for subsidies in Minnesota's health insurance marketplace. The plan they found had a $450 premium each month and an annual deductible of $7,600.

"At first he didn't realize what a deductible was," Smith-Holt says. She says Alec figured he could pick up a part-time job to help cover the $450 per month.

Then Smith-Holt explained to her son what a deductible was.




"You have to pay the $7,600 out of pocket before your insurance is even going to kick in," she remembers telling him. Alec decided going uninsured would be more manageable. Although there might have been cheaper alternatives for his insulin supply that Alec could have worked out with his doctor, he never made it that far.

He died less than one month after going off of his mother's insurance. His family thinks he was rationing his insulin — using less than he needed — to try to make it last until he could afford to buy more. He died alone in his apartment three days before payday. The insulin pen he used to give himself shots was empty.

"It's just not even enough time to really test whether [going without insurance] was working or not," Smith-Holt says.

A miracle discovery

Insulin is an unlikely symbol of America's problem with rising prescription costs.

Before the early 1920s, Type 1 diabetes was a death sentence for patients. Then researchers at the University of Toronto — notably Frederick Banting, Charles Best and J.J.R. Macleod —discovered a method of extracting and purifying insulin that could be used to treat the condition. Banting and Macleod were awarded a Nobel Prize for the discovery in 1923.

For patients, it was nothing short of a miracle. The patent for the discovery was sold to the University of Toronto for only $1 so that live-saving insulin would be available to everyone who needed it.

Today, however, the list price for a single vial of insulin is more than $250. Most patients use two to four vials per month (I personally use two). Without insurance or other forms of medical assistance, those prices can get out of hand quickly, as they did for Alec.

Depending on whom you ask, you'll get a different response for why insulin prices have risen so high. Some blame middlemen — such as pharmacy benefit managers, like Express Scripts and CVS Health — for negotiating lower prices with pharmaceutical companies without passing savings on to customers. Others say patents on incremental changes to insulin have kept cheaper generic versions out of the market.

For Nicole Holt-Smith, as well as a growing number of online activists who tweet under the hashtag #insulin4all, much of the blame should fall on the three main manufacturers of insulin today: Sanofi of France, Novo Nordisk of Denmark and the Eli Lilly Company in the U.S.

The three companies are being sued in the U.S. federal court by diabetic patients in Massachusetts who allege the prices are rising at the expense of patients' health.

The Eli Lilly Company did not make anyone available for an interview for this story. But a company spokesman noted in an email that high-deductible health insurance plans — like the one Alec found — are exposing more patients to higher prices. In August, Eli Lilly opened a helpline that patients can call for assistance in finding discounted or even free insulin.

A dangerous solution

Rationing insulin, as Nicole Smith-Holt's son Alec did, is a dangerous solution. Still, 1 in 4 people with diabetes admits to having done it. I've done it. Actually there's a lot of Alec's story that feels familiar to me.

We were both born and raised in the Midwest, just two states apart. We were both diagnosed at age 23 — pretty old to develop a condition that used to be called "juvenile diabetes." I even used to use the same sort of insulin pens that Alec was using when he died. They're more expensive, but they make management a lot easier.

"My story is not so different from what I hear from other families," Smith-Holt recently told a panel of U.S. Senate Democrats in Washington D.C., in a hearing on the high price of prescription drugs.

"Young adults are dropping out of college," she told the lawmakers. "They're getting married just to have insurance, or not getting married to the love of their lives because they'll lose their state-funded insurance."

I can relate to that too. My fiancé moved to a different state recently and soon I'll be joining her. I'll be freelancing, and won't have health benefits, though she will, via her job. We're getting married — one year before our actual wedding — so I can get insured, too.
Click to expand...
 
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