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CLL Support Association
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Insane Drug Prices

Insane Drug Prices

So i call my CLL death by 1000 cuts and one of the 1000 is my now common skin problems and after yet another visit to the Dermatologist they come up with this

NEO-SYNALAR at 700 yes 700 dollars for a 60 gram tube and while it seems to work i kind of feel bad for the insurance company

This is NOT locked as i want it around as much as possible

10 Replies

Is there a coupon?


My insurance covers it for 75 dollars but it’s still insane it’s just a topical skin ointment

There is a coupon good for 75% off three refills if you jump through enough hoops but of course when your at the doctors and there sending the script to your pharmacy doing a research project for the best price is something you would hope your insurance company would be on top of

To me the fact that a coupon even exists makes it worse as there clearly trying to overcharge so badly


Does the company have a Patient Assistance Program? If you qualify the company usually sends your Rx to your home UPS overnight and if your Dr. says you need refills they need to state that on the Rx to the company and then every month you'll get your over night prescription. Check online and see if that company has a Patient Assistance Program and how to qualify.


Tommy - do you live in USA?



1 like

I will go further than SeymourB - I am a big single-payer or Universal coverage advocate. The USA is the only 1st world or 'civilized' country in the world that doesn't provide health care for its citizens. Both my daughter and I have chronic diseases and she is now faced with a lifetime of deductables, co-pays and denials by For-Profit Insurance and Pharmaceutical companies. It is a disgrace and people are suffering and dying for lack of care and access to proper medications.

Please don't take my word for it:

Read comments on this site by people from UK, Australia and Europe. Do they worry about coverage and co-payments?

ASK YOUR DOCTORS how they feel about Universal Coverage. I've had two separate doctors volunteer that they've had 4X the denials of coverage over last year alone (and this has been an escalation over many years). Every doc I've asked is in favor of Universal as it cuts out the constant battery of rejections and debate. This also eats into patient care and they feel it.

Unless you have some kind of extraordinary insurance, I'm sure you've also felt the sting of your disease in your wallet. I'm not medicare eligible and have paid thousands more with each progressing year (did you know Sweden has an OOP max. of $250.?)

Anyway, sorry if you think I'm grandstanding, but PLEASE do not feel for a second sorry for For-Profit Insurance Co's (or Pharmaceutical Co's)!

As many have said, it is very likely there is a just-as-good-but-much cheaper alternative out there too as I also believe there is a lot of pressure by Pharm's for medical practices to push their drugs.

Good luck



I have had skin problems since I started treatment on Ibrutnib in June of 2017. I spoke with my CLL specialist ad he recommended Cortisone 10 ( I use the CVS store brand) and it is doing the trick at about $7 a tube.


I wouldn't feel bad about the insurance companies. They helped create the high-ball pricing tactic situation, along with manufacturers and companies called Pharmacy Benefits Managers. They all like to blame federal regulation, but that's so dishonest I'd have to say it's as sleazy as street drug gangs.


The net result is that quoted prices are meaningless, and patients without insurance do often end up paying list price if they don't specifically ask their pharmacy for the "cash price", which some PBMs forbid pharmacies to voluntarily offer. The "cash price" double talk is a way for both insured and non-insured to get at least some "discount" of the high-ball price.

Sometimes, the "cash price" is lower than your insurance price due to a PBM practice called "clawback":


When all else fails, check out GoodRx for the best price at various national, and some local pharmacies.


Politically, we need to demand healthcare sunshine laws that would require disclosure of all pricing info at all levels. That's the only way that competition can drive any aspect of the market. The one act so far has not had a great effect, because it doesn't cover enough people, and only focused on manufacturers incentive payments to prescribers:


States are starting to do this themselves, which I hope will lead to demand for national legislation, and better online tools for tracking prices and research by the press:


I can't say that I've seen any effect in Louisiana yet. Part of the problems is that insurance coverage negotiation is an annual event. I suspect the same is true for some aspects of PBM relationships. Here in Lousiana, this legislation was driven to a great extent by a local TV station and newspaper investigation:



In the U.S., a hospital stay can result in being billed by 5 or more entities, and the list is growing. Doctors often claim they are unable to give even an estimated cost for treatment because they don't know how much the anesthesiologist and pathologist will charge. These other entities may be outside the network of specialists covered by your insurance. You cannot even shop around. Costs for the same operation can vary up to 3 fold depending on location:


Healthcare organization, especially hospitals, are increasingly more likely to allow patients to negotiate prices after the fact. So many people just walk away from medical bills, they inflate their prices to compensate. They are sometimes happy to settle for some fraction of the bill than risk losing all. If the 1st person in the billing person you talk to denies the possibility, nicely ask to speak to a supervisor to plead your case.


You can also see if there are any Medical Billing Advocates in your area.



I haven't yet tried myself. I expect they are paid a percentage of what they save you. I worked in healthcare IT, and I try to decode my bills, and weigh the amount of effort to save $20 with my own stress.

Demand sunshine laws. Demand open pricing. Look for Medical Billing Advocate services in your area. Contact TV stations and newspapers, and send them the TV and newspaper link above.



Amen. Morally bankrupt. Thanks Seymour.-bill


My dermatologist prescribed Triamcinolone Cream 0.1%, one pound container, for my itchy bug bites. I pay $1.00 for it through my insurance. Also, Mupirocin ointment for when they get infected.


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