Comment by supergeek133 | Hacker News Reader

Comment by supergeek133 | Hacker News Reader

It seems we really like to focus on "the evil" company, but it goes two ways.

Example: A family member has serious adult scoliosis, which causes quite a bit of pain. For years she has taken Fentanyl Nasal Spray that was made by a compound pharmacist (e.g., they take the raw Fentanyl powder, and mix it with a liquid solution by hand). The retail cost of this is ~$3k for a 30 day supply. Her insurance brought that down to sub $100.

2 years ago, she received a letter from her insurance company stating that because the FDA refuses to guarantee compound (made by hand) drugs, they will no longer cover her current nasal spray and she must move to one of the alternatives.

One alternative was a lollipop, which she used to take but caused her teeth to rot and she now has dentures. Another was different oral delivery system, but it was discontinued by the mfg less than 6 months after this.

So far her only option is a product called Lazanda, they are individually packaged and metered glass bottles of Fentanyl nasal spray. Each bottle is roughly half a day's dose, has it's own box, literature in EACH BOX, and a month's supply is 60 of these boxes.

The retail value of this? Last time I looked it was >$30,000. And the insurance just accepts it.

Madness.

> 2 years ago, she received a letter from her insurance company stating that because the FDA refuses to guarantee compound (made by hand) drugs, they will no longer cover her current nasal spray and she must move to one of the alternatives.

I wondered who lobbied for the FDA to make such a refusal, and who lobbied the insurance companies not to cover such unguaranteed drugs.

If I had to guess, probably the people who make Lazanda (the pre-packaged version of what she lost that doesn't work as well).

Having a very clear version history of both the laws in place, and the bills that made those laws, would be super useful in answering this question.

Are the laws / rules for that publicly accessible?

http://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInforma...

Not all government actions are caused by lobbying.

"Lobbying" is not really a meaningful term for an insurance company. They probably can't cover unguaranteed drugs due to regulation.

what influenced the regulatory legislation though? that's what we mean by "lobbying".

Regulators have their own incentives, without being influenced by outsiders.

For the FDA employee, incentives are very strong to err on the side of banning something. If you ban something and 1000 people die as a result, nobody will care, but if you allow something and 10 people die as a result, heads will roll at the agency.

Of course, I know nothing about this specific decision, but it is consistent with this.

there are countervailing forces in the opposite direction too though. there's something of a revolving door between FDA and pharmaceutical companies. FDA bureaucrats are also implicitly incentivized (i.e. its not bribery or corruption, just systemic) to "help out" very large name brand companies where they may be offered employment in the future. they have no incentive to do this for the various local compounding pharmacists that compete with name-brand pharma products.

Often the "sticker price" is just a negotiating chip. Big drug co's and big pharma have a byzantine relationship of price hikes and rebates. I wouldn't be surprised if the price the insurer pays is not materially higher than the original $3K.

That could be true, she has chosen to pay for the compound version with cash more than once, and the price is $3k. It provides much more relief than the packaged version.

Obviously on the EOB from the insurer, they show they paid the same price the pharmacy communicates. That's pretty crazy if the TRUE price is obscure

Not sure on the packaged version price if cash was paid..

My guess is the insurer will get a rebate at the end of the year from the drug manufacturer based on volume discount.

Probably a safe assumption.

Why do you consider $30,000 dollars madness, but not $3,000?

$100 for a single dose? Hand-shaken or not, it's still madness.

Never said I didn't, but you have to take everything in context.

If you take a pharmacist that has to be specially trained/certified to compound, plus one of the most potent/dangerous narcotic prescription painkillers out there and put them together, maybe $3,000 is the right price? I don't know how much any of those steps costs. Or what someone's time is worth there.

4-5 years ago, yes we thought $3k is obviously high, but then you put the fact that now her only answer is a $30k alternative?

Context matters.

The entire thing is madness back to how she ended up this way, but that's a longer story.

It sounded to me like $100 for a thirty-day supply.

it was implied that that was the insurance co-pay. her own out of pocket expense was only $100, but the overall cost of the medication was still $3000, thus $100/dose x 30 days per month = $3000/mo.

Yes, the co-pay was ~$100.

The madness is to pay $30k when the $3k solution works fine.

Correct.

I know this is beside your point and not to be the Coloradan in the room, but has she tested the efficacy of marijuana to ease her pain? I'm not a doctor, which is who she would want to talk to first, but from my understanding, pot is so harmless that can be taken in conjunction with Opiate pain killers. It's not addictive or potentially life threatening like opiates. There are strains that leave you mentally functional while killing pain. And depending on how much she needs, the retail cost would probably be in area of $70 - $200 a month and would be going to local entrepreneurs & farmers. If you grow it yourself, the cost goes down to maybe $10 - $30 a month depending on your state's MMJ regulations.

Side note: https://livertox.nlm.nih.gov/Opioids.htm

I live in MN, we just recently got a full medical marijuana program.. but the paperwork is quite extensive and the approval process long. There is already quite a wait.

But yes, I'm sure it would help her somehow. Although she is in remission from lung cancer as well and is on oxygen, I'm a bit ignorant to the side effects there.

As another Coloradoan there are extracts that can be inhaled in a vapor that could be useful if the smoke is an issue might be worth talking to your doctor.

When my mother was passing from cancer she didn't like the edible formats since they take a long time to kick in and it can be hard to determine an hour out how much pain or nausea she would be experiencing.

Vapor and smoking seemed to be a great way to get a fast dose to decrease suffering.

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