He couldn't afford his inhaler when the price soared without warning -- and died days later

[Jilly_in_VA]

When 22-year-old Cole Schmidtknecht tried to get a refill on the inhaler prescribed by his doctor to prevent asthma attacks. The medication that had formerly cost him less than $70 at his Appleton, Wisconsin pharmacy was now priced at more than $500, according to Cole’s father, Bil Schmidtknecht.

Stunned, Cole left the store with a medication designed to stop asthma attacks once they start, but without the Advair Diskus inhaler he needed to prevent attacks from happening in the first place.

Five days after his pharmacy visit last year, Cole had a severe asthma attack, stopped breathing and collapsed. He never regained consciousness and died. Doctors attributed his death to asthma.

His parents, Bil and Shanon Schmidtknecht, blame what they say is a dysfunctional system where medications can change in price overnight and without notice.

A part of the insurance system that many Americans don’t know about was responsible for the spike in Cole’s inhaler price. Pharmacy benefit managers, or PBMs, are the middlemen that control behind the scenes which drugs will be on an insurance company’s list of covered medications (called its formulary).

They add or subtract medications through a process that emphasizes profits for the pharmacy benefit manager by way of “rebates” from drug makers, said Gerard Anderson, a professor of health policy and management at the Johns Hopkins University Bloomberg School of Public Health.

https://www.nbcnews.com/health/health-care/asthma-death-prescription-price-pharmacy-lawsuit-rcna210075

PBMs should be absolutely OUTLAWED. They have probably caused more deaths than Big Pharma itself.

[Maraya1969]

1. I had to get a generic asthma inhaler/preventer last week. It was the first time I ever

was faced with my insurance not covering asthma medicine. I think that drug companies should not be allowed to mess with prices of a drug that is literally a life or death medicine. Heck, I heard that asthma is one of the conditions that ER rooms consider as dangerous as anaphalactic shock.

[Ms. Toad]

2. If you have a chronic illness, It is critical to check your formulary every year before insurance year starts.

Cole Schmidtknecht died on January 21. Five days earlier would have been the first refill, assuming his plan year started 1/1. Drug prices change based on the new year's formulary. So it likely was just the annual formulary change, not an unpredictable change.

Both my spouse and my daughter rely on costly medication for chronic illnesses. November has been the traditional date of the new formulary. That gives us more than a month to switch to a different option (in cases where we had multiple plans to choose from) or to communicate with their doctors about alternatives which are on the new formulary, or about starting the process to get a formulary exception. We've had a couple of close calls where a prescription was running out within the last week of December or the first week of January, but we've made them work because we know we have to. (This includes periods when my daughter was the same age as Cole.

The blame ultimately lies on our crappy health care system, and lack of a safety net for situations like this one. But given that's what we have, self-protection can sometimes make the difference between life and death.

[hunter]

4. Running out of asthma medications is not an option for me.

Before modern asthma meds I was a frequent flyer to the E.R.

After that, in times I had no money and no good insurance, I had some close calls.

Now I get anxious whenever I have anything less than a six month supply of asthma meds stashed away.

I'll confess, I don't always get my asthma meds through the usual channels.

Once upon a time I got a year's supply in Mexico. Did I cut back on my regular prescription? Only to the extent that I wouldn't have meds going out of date.

I'm not so anxious about running out of my psych meds and that's had consequences.

Stories like the original post horrify me.

[Ms. Toad]

5. Agreed.

We just went through a very scary time when the formulary supplier of the only approved drug for my daughter stopped manufacturing the drug. The name brand (which she's used for 3 decades) is not on the formulary.

It is the only medication she which has consistently kept her disease in remission for that entire time. She had to have surgery which was minor - assuming her colon was not inflamed - but catastrophic if it was. It was not inflamed in October (after a year of doctors telling her she should just give up and have it removed - during 3-4 hospitalizations), but surgery couldn't be scheduled until early April - about 2 months after the discontinuation of the medication. She got special approval for a half-dose of the brand name. In order to have the surgery, she doubled up on the medication - hoping to get an exception or a manufacturer's coupon for post-surgery so she wouldn't have nothing post-surgery.

Different kind of formulary issue - since it was mid-year that it appeared, and we couldn't prepare for it. She finally got the supply from the manufacturer, but she has to pay more because it isn't on her formulary. (She's a $200,000 a year medical miracle - so she hits her out-of-pocket max in January. This blip adds payments on top of her out-of-pocket max.)

Staying healthy should not be this hard - especially when we have a proven track record of what is effective. But self-protection (getting your drugs through unconventional means, using up a prescription twice as fast as it supposedly should be used up, etc.) helps prevent disaster.

[JanMichael]

12. I had childhood asthma in the '70s. It was scary.

The only thing that would stop an attack were the capsules with red and white tiny pills they would break open and dump over ice cream. Then there was the nebulizer, ugh.

Then asthma left me at 12 years old. It came back in my early 30's. By then inhalers were everywhere.

Inhalers were fantastic.

I could get 3 for 21 dollars at Costco in the early 2000's.

Now they are 40 bucks WITH good insurance.

I try to stockpile them too. Have one in the car, one at work, one in my spouses purse.

I don't get bad attacks but it's always in the back of my mind when I hear faint wheeze.

If you stop breathing you die. Asthma meds should never be cost prohibitive.

[haele]

3. California allows Pharmacies to sell inhalers to uninsured

"Over the counter" - though you have to sign up for their free "health care/coupon clubs".
$35 for a generic normally prescription asthma inhaler (yeah, generic - but it's got the full 200 doses).

[JanMichael]

13. That's the way it should be everywhere.

[dalton99a]

6. Kick

[canetoad]

7. Tragic

How can this be allowed to happen in a so-called civilized country. His parents are suing, per this article:
https://www.nbcnews.com/health/health-care/asthma-death-prescription-price-pharmacy-lawsuit-rcna210075

His parents, Bil and Shanon Schmidtknecht, blame what they say is a dysfunctional system where medications can change in price overnight and without notice.

A part of the insurance system that many Americans don’t know about was responsible for the spike in Cole’s inhaler price. Pharmacy benefit managers, or PBMs, are the middlemen that control behind the scenes which drugs will be on an insurance company’s list of covered medications (called its formulary).

They add or subtract medications through a process that emphasizes profits for the pharmacy benefit manager by way of “rebates” from drug makers, said Gerard Anderson, a professor of health policy and management at the Johns Hopkins University Bloomberg School of Public Health.

PBMs “are looking for the drug that makes them the most money,” Andersen said

[electric_blue68]

8. How Horrific! :( My mom suffered from severe asthma.

Good luck, DU'rs!

[Initech]

9. This country sucks right now. Something has to change.

We can start by throwing the worst HHS director in history in prison.

[Crunchy Frog]

10. This actually seems to have happened around a year

before the current regime took office. Not that I expect things to get any better under current leadership.

[Initech]

11. Oh I expect things to get way worse.

The dumbass was on Fox (obviously) the other day doing a shot of raw milk. A lot of people are going to die because of him.

[Hekate]

14. KnR

[Figarosmom]

15. Our system is so mercenary

And I have no idea why so many settle for it that we can't get it changed.