Disposal of unused Pegasys Interferon: I live in... - MPN Voice

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Disposal of unused Pegasys Interferon

clevemic profile image
10 Replies

I live in the US, and am discouraged at the wastefulness that the manufacturers of Pegasys Interferon have shown. Each vial holds 180micrograms of medication. Without insurance, this would cost between $1100 and $1400 PER WEEK!!! Fortunately, I pay only $25 per week, or $100 per month, with my insurance. I take 90 mcg per week, and have learned on this forum that many people only take 45mcg. The problem is, that we have to throw the rest of the vial away. I have asked the pharmacist, and my oncologist why I am not able to use the remaining medication the following week, and have not received a clear explanation. Both told me that it must be discarded. I feel terrible each time that I must throw away a medicine that is so incredibly expensive. Does anyone have any understanding of why the same vial can not be used for more than one injection? Secondly, why don't manufacturers make vials containing fewer micrograms, since it seems that many patients do not use the full 180mcgs? If this is carelessness on the manufacturers part, I think that we need to rally for change. If there is a clinical reason for it, then I will stop letting it bother me so much as I discard my unused portion each week. Thank you for any information that you can provide.

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clevemic
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10 Replies
Pingi profile image
Pingi

It is availble as 90 mcg can’t you request that strength?

clevemic profile image
clevemic in reply toPingi

Hello, Pingi. Please let me know what manufacturer produces the 90mcg vials. Thanks much!

MPort profile image
MPort

You have raised a topic that is a torn in my side too. I have discussed this waste with docs, haems, prescribing and dispensing pharmacists. They are all too low down in the chain to influence the pharmaceutical giants.

As earlier reply they now dispense in 90mg which is what I get and use 45mg and discard the rest. I used to get the 180 and discard the rest.

The reason given for not using a second time is there is no chemical in it to safely use it twice. Longer life stabliser. Second you can't use needle a second time.

However as you say when patients pay their own and can save a lot of money they do so. It is easy to buy needles. (I have a box of smaller needles to replace the bigger ones supplied.) So a new needle is used for 2nd dose.

My brother works for a pharmaceutical giant in IT. Their production process is immense and so complicated. It is like a bohamoth resistant to adapting to lowering it's profit margins.

Good luck with your desire to change it.

Mairead

Gesha profile image
Gesha

Hello. I live in Indiana and my insurance won't cover pegasus. I can't buy it because it's very expensive here. I am buying it in Europe for about $300 for 180mgr. That's 4 doz. I using all. Just changing needles. Needless getting from insulin cartridges. I would love to get that you disregarded!

What insurance company you are in? Maybe I should change...

Thanks

zvinkovic profile image
zvinkovic in reply toGesha

Hello,

Can you please share where are you buying Pegasys from? I live in Croatia and Pegasys is not approved for ET or MPNs here, just for hepatitis, so I was thinking I could buy Pegasys and give it a try so I could make a case to my hematologist if it turns out to be working better than regular Interferon.

Thanks and all the best,

Zlata

Gesha profile image
Gesha in reply tozvinkovic

Hello Zlata

I'm buying Pegasys in Ukraine. Going to Kiev in August for another one year supply. Getting it throughout a hepatologist doctor. If you need help for getting it let me know I can help!

Thanks and stay positive!

clevemic profile image
clevemic in reply toGesha

My insurance is through my employer, and I am a teacher. I therefore am very lucky to have excellent coverage. I wish we could make some changes so that it is more available to ALL people. I have been in touch with someone who works for a large pharmaceutical company. She said that it is going to be a very uphill battle to get changes in place.

LisaWon profile image
LisaWon

I never throw it away. To me that is such a sin! The doctor told me that its not necessary to throw it away, just make sure you use sterile technique when you draw up the medication, always use a new needle (obviously), wipe the rubber stopper with an alcohol swab etc. Back in the 80's when they had multiple dose vials in the hospital (I'm a nurse) we used the same vial for multiple doses. The pharmacist told me to discard what I didn't use. No way!

Keep in the refrigerator.

I've been doing this now for 2 years and have had no issues. Wasting three more doses at that cost is just not going to happen!

hunter5582 profile image
hunter5582

Pegasys does not have a preservative in the formulation. Once the vial is pierced, it is not considered safe to use the remained of the PEG at a later date.

The 180mg doing is based on the recommended dose for hepatitis, which is the FDA approved indication for PEG. While in common practice, using PEG for MPNs is considered off-label. Given how rare MPNs are, it would not be cost effective for the manufacturer to make MPN specific doses. It actually make bore sense economically to waste the unused portion.

The good news is that Besremi (ropegylated interferon) will hopefully soon be approved for treating PV. It will come in a more standard dosing for MPNs since that is its intended use. Hopefully we will about that in November.

JackLina profile image
JackLina

I agree with you and all those years ago when I began using the drug, I contacted Roche and asked the same question . I was told that if the professionals prescribing the drug indicated there was a need, then they would do so. It seems nobody in the profession has requested 45mcg vials.

I too require that dose and it took me months and a transatlantic phone-call to convince my oncologist that it was available in 90mcg vials. He had insisted 180 mcg was all they produced and continually prescribed this.

So, the thing to do to make this happen......ask your oncologist or haemetologist to contact Roche with a request to provide pre-filled syringes containing 45mcg. I will do the same and hopefully, on reading this message, so will others in our position.

Years later I hope this is some help. All the best to all who are experiencing the same. P.

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