Sensipar Rant

[JerseyGirl]

Yesterday one of my patients told me that his co-pay for Sensipar 60mg QD is $700 a month.  $700! How in God's name can anyone yet alone a dialysis patient afford that?  Amgen makes more money than God, for goodness sake, they have made millions from EPOGEN since 1990, probably the same for Aranesp, and now Sensipar!  And what pisses me off even more is that every time there is a rise in the composite reimbursement rate for dialysis treatments, AMGEN increases their prices for EPO and eats that increase right up from the clinics.  So the profit clinics make with the EPO markup to insurance companies that could be used for clinic supplies -new TV's, IV med pumps, scales, etc and even staff salaries disappears.  I called the reimbursement hotline as I heard that possibly AMGEN would reimburse the patient for his copay and was referred to another company who told me that the patient would need to submit his financials to see if he qualified for this reimbursement, but the patient probably wouldn't qualify with his level of income which is pretty meager.  That is pure bullshit.  Yeah I know AMGEN has to answer to shareholders but enough is enough!  Even worse is the drug is pretty effective at what it is supposed to do - suppress the parathyroids.  I'm all for free enterprise and all that but how much is too much?  That company has no altruistic properties at all and probably has a "mission statement" dedicating itself to the best patient care.  I know that they probably do alot of research, blah, blah blah but it seems they have the dialysis patient by the *****.

[mallory]

I agree, JerseyGirl, it's ridiculous.  I take Aranesp now.  I take one injection a week, with my current insurance I pay $50.00 a month for four injections.  I can get it for $50.00 for a three month supply if I get it through the mail, which I am going to start doing.

But, next year my company is changing insurance.  The new prescription coverage will possibly only cover 20% of the retail price of the Aranesp, because it's not in their formulary.  If that happens, it will cost me $3200.00 a month, because the retail price of the Aranesp is $1000.00 an injection.  My gosh!  I can't afford that!  I just find it hard to believe that it's really costing them that much for these drugs.  They need more competition, or something.  I think it's practically criminal.

[Black]

... the drug is pretty effective at what it is supposed to do - suppress the parathyroids. ...

Has the patient tried Hectorol?  My husband takes it and so far has had no apparent side effects and it worked quickly to bring his levels down.  It's rather expensive but his Neph had samples available.  Now he gets it free from the manufacturer -- has to pick it up at the neph's office.  Go to   www.hectorol.com   

[BigSky]

Sensipar is very expensive. 

Drugs are mainly expensive in the US to support lower drug costs around the world where the companies are limited in prices they can charge.

I do not see why they would pay so much if they are in the US.  My medicare drug plan covers almost the entire cost of my sensipar except for a small copayment.  Something like 5.00 a month for it.


The recent cost for a 90mg 30 day supply was almost $900, and that was picked up by the plan except for the small copay I mentioned.

[Python]

I agree, JerseyGirl, it's ridiculous.  I take Aranesp now.  I take one injection a week, with my current insurance I pay $50.00 a month for four injections.  I can get it for $50.00 for a three month supply if I get it through the mail, which I am going to start doing.

Just be careful which company you choose to supply it and check the use by date.  I used to use Ventolin Inhalers and even though we get prescriptions on the NHS (£6.75 for one inhaler) I found I could buy in bulk, have them delivered to my door within 10 days and not have the hassle of going to the doctors for them.  The company I used was very good, very efficient and the Ventolins were proper Ventolins not some generic brand.  I would certainly recommend this company and if you want the link for it, please PM or e-mail  me.  The only thing I would say is that the use by date is shorter than what I wouild have on prescription here.  E.g. there was a use by date of about 1 year to 18 months as opposed to 2 to 3 years.  Instead of paying £6.75 (our prescription charges have gone up since then) they worked out at about £4 each.

That is one thing that is good about our NHS though, and that is if you need expensive drugs you get them for the price of the prescription.  Over here diabetics and people with thyroid problems (I think there are other illnesses covered too but can't remember which) get free prescriptions.  Unfortunately, asthmatics do not and, amazingly, nor do renal patients.  Why I don't know because both conditions are life-threatening.

[Rerun]

Greedy Bastards!!  That is all I can think of to say!

We should all get together and boycott Epogen and the other high cost drugs.  We can live without them.  We've done it for 45 years!

Just one week if all renal patients said "NO" to these drugs maybe they would bring the prices down.  What is reasonable??

Dialysis its self is horribly expensive.  In 1961 it was $10,000 a year and now it is $10,000 a week. (That includes the Epogen)

[BigSky]

Dialysis its self is horribly expensive.  In 1961 it was $10,000 a year and now it is $10,000 a week. (That includes the Epogen)

It varies greatly from unit to unit.  Cost here for my treatment including everything is $2,500 a week. 

[mmmmdeedee]

Doesn't everyone with renal failure get medicare? Shouldn't this pay for their prescriptions? (In the US that is)

I work for a biopharmaceutical and work right down the street from Amgen. I realize that these drugs are super expensive and yes, they are making a bunch of money. But it is because of that money that research still occurs. Without the research we probably wouldn't be alive today. No cure for cancer or HIV in the wings, etc. We need them as much as they need us.

Just be thankful (again, in the US) that we have a disease that allows us to get on Medicare. If it weren't for that, I believe a lot of us would be going bankrupt over the medical bills. One 8-day stay in the hospital = over $100,000. Who can afford that?

And asking the companies for help does work. Hopefully it'll work out for everyone having to pay these exhorbitant prices!

[Black]

Doesn't everyone with renal failure get medicare? Shouldn't this pay for their prescriptions? (In the US that is)...

No, everyone in the US with renal failure does not get medicare.  My husband is 63, creatinine 5.3 last month, not yet on dialysis, no insurance for many years, has been on soc sec disability since March, but he will not qualify for medicare until he actually starts dialysis.  Under those circumstances he was able to qualify for free meds from the manufacturers.

[mmmmdeedee]

Sorry Black, I guess I was just assuming that everyone with renal failure was on dialysis. I forgot about the time in between. Do you still have to take Sensipar when not on dialysis? Is he rejecting a transplanted kidney?

[Black]

Sorry Black, I guess I was just assuming that everyone with renal failure was on dialysis. I forgot about the time in between. Do you still have to take Sensipar when not on dialysis? Is he rejecting a transplanted kidney?

No, he's never been on Sensipar but the neph does give him Hectorol for hyperparathyroidism.  He has taken it, off and on since last year sometime, depending on his labs.  He gets it free from the manufacturer.  He's never had a transplant; he has advanced PKD -- kidneys are HUGE!  Yep, he's in that limbo area between kidney function that's still enough to make you feel almost normal and where you finally have to start dialysis.

[rablrowsr]

Have you been in touch with Healthwell Foundation?  They will usually help.

[Zach]

Sensipar is very expensive. 

Drugs are mainly expensive in the US to support lower drug costs around the world where the companies are limited in prices they can charge.

I do not see why they would pay so much if they are in the US.  My medicare drug plan covers almost the entire cost of my sensipar except for a small copayment.  Something like 5.00 a month for it.

The recent cost for a 90mg 30 day supply was almost $900, and that was picked up by the plan except for the small copay I mentioned.

But remember, the total cost of the drug will bring you to the "doughnut hole" ($2,250) in Part D sooner.  That may not be a problem if your plan covers beyond the Initial Coverage Limit through to the Catastrophic Coverage ( $3,600 out of pocket costs).

[Dr. Evil]

Zach-
I am really torn on this issue.  On one hand, I see the pharma side....they have to spend millions of $, either developing a drug, or buying a smaller company that has a good drug.  Then they have to market the drug. They also may have a flop when some unknown adverse effect pops up, or a better drug gets to the market.  Then they have astronomical liability issues whenever something goes wrong....which will always happen statistically if you sell enough drugs....then the legal bills, etc....and then you have to make money at some point, which is the whole idea of investment capital, stockholders, etc, etc.....

If there is no profit incentive....then we go back 50 yrs.....old school medicine....sulfa and PCN, and good luck getting any new innovations at all.

From the patient perspective, I totally agree.  Sensipar is obscenely priced.  I am not sure how good their pt. assistance program is, but the cash price is way too high.  There has to be a better balance between price and access to the meds.  I just don't t know how to get there without destroying the factors that allows such good meds to be developed.

I think one option I have toyed with (in my mind) is the exact market forces that we love to bash.  More open pricing would be better.  I have always thought our current system is not consistent with buying anything else.  It is easier to shop around for prices for a car, toothpaste, or books.  But the price of meds is hard to find.  Although I am not a fan of Wal-mart per say, perhaps we need some discount brokers to stir up the market places and get these brand name drugs discounted and start the market working for the consumer (more).  Selling cheap generics sounds good, but I think we need so shop around more for brand names.  I wish as an MD, I can write for "ACE inhibitor, medium dose" and let the patient shop around and get the best price on what ever drug they feel they can afford.

Zach- have you done any documentaries on this....  I know Mr. Moore has a big one coming out next year....but I think he is a hack and brings way too much bias into his movies...they really more political and any truth-seeking process.





EDITED:  Fixed quote tag - Goofynina/Moderator

[waitlisted]

From my experience the doctors don't necessarily even know the prices for medications/blood work.

In my my nephrologist is often asking me how much am I charged for different blood works. However he has been very co-operative, e.g. when he started me on cholesterol medication he told that there are couple of different statins all of which would be OK and prescribed me Lipitor, after making the research I found out that I was able to buy generic Zocor with the fraction of the Lipitor price and I asked him if I could change and he agreed.

Another example was when I had always been using alfacalcidol (European version of calcitriol) for PTH control, he wanted to change me to Hectorol what they were using normally. However after I told him the price difference between these drugs, he said as the current drug is working fine for me he could not ask me to change to the more expensive one.

[Zach]

Zach- have you done any documentaries on this....  I know Mr. Moore has a big one coming out next year....but I think he is a hack and brings way too much bias into his movies...they really more political and any truth-seeking process.

I'm a big believer in competition in the marketplace.  But with recent articles about companies trying to delay the generic roll-out of their drugs, the marketplace may be too corrupt.

In most of my documentaries I focus on what works and why.  I've looked at the urban renewal, education, after-school youth programs, and public housing.

I'm not yet ready to tackle such a complicated story with the limited resources I can raise.  But there is a great need for a fair and truthful analysis of cost vs. sales price.

PS:  Good to have you back!