9 replies to this topic

[chriskuo]

New group launched by former political consultant who has multiple myeloma.  Says patient advocacy groups are compromised by funding by drug industry and pharmacy benefit managers.

 

Per Axios' Davud Nather:

 

There's a new advocacy group joining the fight against rising drug prices. Patients for Affordable Drugs, founded by David Mitchell, a former partner at the political consulting firm GMMB, launches today to tell stories of patients struggling with high drug costs and push for federal and state legislation. Mitchell is fighting multiple myeloma, a blood cancer that costs $26,000 a month to treat. He'll have help from Ben Wakana, the executive director, who was a Department of Health and Human Services spokesman in the Obama administration.

The twist: You'd think there were a ton of patient groups on the case already, right? Not really — most of the fight has been coming from industry group coalitions like the Campaign for Sustainable Rx Pricing. Mitchell says many of the patient advocacy groups are too compromised by funding from the drug industry or pharmacy benefit managers. So he's avoiding those funding sources and starting his group with a $500,000 grant from the Laura and John Arnold Foundation, and he and his wife are kicking in $75,000 of their own. "We have a constituency that hasn't been tapped," said Mitchell. "We'll be able to play."

[Red Cross Kirk]

I've been thinking that it's no wonder insurance costs are going up so much every year.  Since I was diagnosed almost four and a half years ago, the price of Gleevec has nearly doubled even though it seems there should be more people taking it every year.  As far as I know, there isn't some component that they need to make the stuff that's in short supply which is causing the price to go up.

 

I have taken advantage of the copay program, but it kind of feels like a bribe.  Maybe if they spent less on their marketing the price wouldn't go up so much. It seems like they're always sending me stuff in the mail.  They sent three reminder letters to renew the copay for 2017!  I called them when I got the second one to verify that I had already renewed, and then the third one came a week later.

 

"Drugmakers have a natural alliance with patient groups, which helps explain their alliance, says Robert Zirkelbach, a spokesman for the Pharmaceutical Research and Manufacturers of America trade group.

"Patient groups and biopharmaceutical companies share the same goal of improving patient access to innovative therapies and ensuring the continued development of new treatments and cures," Zirkelbach said in an emailed statement."

 

I'm not so sure I want to be an ally with the drugmakers.  With me it's more of a love/hate relationship: I love that their stuff is keeping me from getting sick, but I hate how much they're charging for it. I think we as consumers of their products would like to be cured so we wouldn't have to take the stuff anymore.  Oh well, it's encouraging that there still seems to be research into curing CML.

 

As of the end of 2016, my insurance statements say I've swallowed $335,571.32 worth of Gleevec since I've joined the CML club.   I hope Novartis is putting it to good use!

[chriskuo]

Prices for drugs under patent are not based on costs , particularly since very few drugs make it successfully through research, development, and trials.  They are priced on how much they can get insurers and employers to pay for the drugs and justify the price based on the basis of the value of a year of life.  Almost every new cancer drug is priced over $100K per year.  Other highly successful drugs are introduced at similar prices.

 

Also note that it is common for insurers and pharmacy benefit managers to get discounts of 30-40% off the highly publicized list prices.

The discounts are a black box with no transparency to patients or the public.   The discounts are essentially a tool used by PBMs to win business from large employers.

[rct]

All drugs are tiered.  The tier the provider is in determines what the provider charges the patient.  The amount of the prescription drug the provider can move in a given time coupled with exclusivity of brand and other things determine the tier the provider is placed in, which determines their cost, though two pharmacists have told me their cost is quite different from the other locals in the same tier.   There is absolutely no cost rationale applied to any drug in the prescription market, it is purely based on what they can get for it.  The prices thrown around on the morning news shows when this is a hot issue and that appear on statements and invoices are what most businesses would call Full Retail, which nobody actually pays.  This is the "free market" out of one side of their mouths, the side they like.

 

We pay 135 dollars for a three month supply of Gleevec, but we pay through the nose for our insurance.

 

rct

[xxgirl]

Hi all,

I know this is not exactly in line with the thread, but I have several boxes of Tasigna 200mg that I would love to send to someone that can use them. (5 total, I believe.) I was taking 800mg daily, so it's quite a lot of pills. With drug/insurance prices what they are, it would make me feel better if these don't go to waste.

So if your drug prices are outrageous, or if you're stocking up for the zombie apocalypse, send me a private message, and I'd be more than happy to send these to someone that can use them.

[IGotCML]

Prices for drugs under patent are not based on costs , particularly since very few drugs make it successfully through research, development, and trials.  They are priced on how much they can get insurers and employers to pay for the drugs and justify the price based on the basis of the value of a year of life.  Almost every new cancer drug is priced over $100K per year.  Other highly successful drugs are introduced at similar prices.

 

Also note that it is common for insurers and pharmacy benefit managers to get discounts of 30-40% off the highly publicized list prices.

The discounts are a black box with no transparency to patients or the public.   The discounts are essentially a tool used by PBMs to win business from large employers.

 

FYI - I used to do financial work for a company that was involved with providing staffing to hospitals and the discounts to list prices also applied. This is a common feature of how health insurance companies negotiate with hospitals. So when you see a very inflated amounts for products and services provided to a patient at a hospital, you are seeing the "list price" - comparable to what we see on our monthly invoices for TKIs.

[sbell111]

I'm not sure that I agree wi the premise that drug price increases are a primary cause of high overall healthcare costs. I believe that the primary driver of ever increasing costs are the big insurance companies like United Health Group who set their premiums/copays/deductibles to guarantee a 20% increase in profits year over year. It doesn't take complicated math to show that these every increasing profits quickly make insurance completely unaffordable.

[r06ue1]

Drug costs are just one part of the picture, everyone has to get their piece of the pie (Big Pharma, hospitals, insurance companies), once you add all of those up, you get what we have in this nation.

[thatguy]

Ugh.

[chriskuo]

Note that patient advocacy organizations are heavily funded by drug companies. A major conflict of interest that we benefit from to some degree.

Pharmacy benefit managers have a new advertising campaign that claims that some kinds of price transparency are good (what you pay) and some are bad (basically what goes on inside their black box). Right.