Over the course of the last few months, I’ve had a lot of ups and downs from my recent diagnosis of ET Jak2+ (5% mutation), platelets were at 1,051, spleen at 13cm. I’m 39 and can’t imaging being on Hydrea for the rest of my life. Started with 500mg Hydrea daily for a few months and was recently bumped to 1000mg daily and told to take low dose aspirin. Currently, platelets are now at 852. Experiencing eye irritation, lower back problems, mouth ulcers, FATIGUE, hair thinning, etc. so I wanted to try out Pegasys. Finally got in with Haris Ali (MPN Specialist) at City of Hope last Weds and he agreed that giving Pegasys a try would be a good idea. He mentioned starting at 45mg to see how I tolerate the medication. After calling up to get an idea on cost, I was blown away by what they were quoting me. For one 180mg Pro Click pen, I was told it’s going to cost almost $500! This is the cost with my deductible already being met too! Does anyone know of another way to get the medication at a somewhat reasonable price? I have Anthem Blue Cross PPO. Any info would be greatly appreciated.
Newly diagnosed with ET. How to afford Pegasys??? - MPN Voice
Newly diagnosed with ET. How to afford Pegasys???
Hi. I’m in the UK, therefore medication is free of charge. I’m on “standard” interferon-a, but when I asked about Pegasys I was told by my Haem that i’d only be offered it if I couldn’t handle any side effects of the standard and cheaper (non pegylated) version. Maybe ask about that instead, or at least as a comparison? I’m on Roferon-A...no side effects after the first few weeks of mild flu symptoms!
Good luck!
Hi... I've just been told theres a shortage in the u.k and I'm going to have to change to pegasys..... I'm currently on interferon alpha.. roferon....
Hi Wormwood, I hope everything works out for you. Hopefully the shortage is just a rumor.
Hi... it's not a rumour.... my nurse at heam told me herself, apparently they're not going to be using it anymore because there a better meds which of course us pegasys.... I change over in Sept.... xx
Wormwood, not sure where you are located and your exact diagnosis, but I’ve read some really good things on Ropeg too. I hear it’s like Pegasys but long acting and less side effects. Might be worthwhile to look into as another option if available. Just a suggestion. Thanks.
Hi I'm in the u.k... I'm e.t jak 2+..... I'm on interferon alpha until September then I'm going on pegalated interferon.... due to a shortage of the interferon I'm on now.... my counts are stable at 400 ish.... I do suffer with none pain and fatigue, but I also have an autoimmune problem Behcets disease so it could be that.... I have 7 liver adenomas which also cause pain and a slipped disc which caused allodynia in my left leg, learning to live with that.... I'm lucky things could be a lot worse... we are very lucky here in the UK, as meds are readily available when needed....
Take care xxx
Love to see stable platelets and your positive outlook hence everything going on. This is still fresh for me and honestly it’s very overwhelming. Just taking it day by day and hoping for the best. Take care!
You'll be ok.... it does take time for us all to process our diagnoses.... just take as long as you need theres always someone on here to reassure you...or you can direct message me, it's not a problem... take care of you xxx
I wouldn’t really call it free lol as we pay a lot of money in tax and national insurance but I know what you mean!
Wow, I wish medication was free in the US, that would really help out. Thanks for the info, I will definitely ask about the “standard” interferon-a. Have a great rest of your weekend and thanks for taking the time to respond.
I wouldn’t really call it free lol as we pay a lot of money in tax and national insurance but I know what you mean x
Hi, if you live in the US then please write to your senators and congressmen (person). Senator Grassley is putting together a bill that would limit out of pocket expenses for the US that would limit out of pocket drug expenses to 3100.00 per year. Still high for someone living on Social Security but better than unlimited costs. I don't know if this is for all persons or just for people on medicare. I think we can all agree that these life saving drugs should be made affordable to everyone who needs them. So, write you congresspeople (is that a word?) and demand that they do something to curb the ever increasing costs of medications. I wonder how many congresspeople get financial benefits from allowing drug companies to price their drugs so that we must bankrupt ourselves to afford them to stay alive, immoral at the very least, criminal at worst, in my opinion. Best of luck in finding an affordable solution, please let us know how it works out.
I am getting from ukraine 180 for $160. Are from Germany for 250 euro.
Hi there, Perhaps getting it from Canada it may be cheaper as I know that many people in the US getting cheaper drugs from there.
Also while ago I had information from Mayo Clinic in Arizona where Professor Messa is and they offered help for people that are not able to pay for their medication.
Also, check out professor Verstovesek in MD Anderson Cancer Center Huston Texas. They also had ways of helping patients to obtain cheaper medication.
Wishing you well and good luck
Hi, Did you have a thrombotic event that they put you on the hydrea? What does 5% mutation mean? is that like the alelle burden? Is that high? That is so expensive!!
Hi Jschwab, no thrombotic events. Since my spleen was slightly enlarged (13cm - I guess 12 cm is normal), I’m Jak2 +, and my platelets were over a million, they started me on Hydrea. Yes, 5% is the allele burden. Not sure if that’s considered high. I know, just crazy how much it costs!
Got it- my platelettes are in the 900's- but I am taking aspirin for now. I go to the heam tomorrow to see what their counts are at now- of course hoping that didn't increase.
Good luck and keep us posted!!!
There are patient assistance programs. I know because I didn't qualify. Your hematologist's office should help you make the connection.
Dear Kseely ! I'm so sorry to hear about your sufferings and the darn medical industry's merciless prices 
I have only 1 advice : If you could find someone near you who is also suffering from the price of Pegasys you could share the dose !!! What I mean is that there is 135 mg in each ampoule !!
Maybe you could talk to your doctor about the possibilities of sharing. Maybe you'd have to go to the hospital to have it done there ?
This is a thing I've thought about airing !!! Sharing medicine. It is necessary to stop throwing poison away, like it was banana peel !!! And the only way to avoid that is to share doses !!!
Sorry-- not exactly an acute help. I'm also suffering --and also on 45 mg dosis.
I pray for a solution for you !!!
Best wishes - Yarrowleaf
Hi Yarrowleaf, interesting suggestion. I’ll ask my local hematologist and see if that is even a possibility. I agree, just doesn’t seem right to such expensive “poison” away if someone else can benefit from it. Thanks for the suggestion.
-- I only called it poison, because it (and many worse vaccine rests) could risk ending up in our drinking water 
I don't know either if it is possible, but you know that "possible" is a very elastic thing !! I know what can be done in emergency situations !!!!
Let's see if it could "catch fire" medicine waste is one of our problems. Medical prices and the power of the medical industry, another one !!
I hope you'll find a solution, but I'll tell you one thing : Most of your symptoms/side effects are on the Pegasys list also. In my opinion, most "side effects" are simply the body's reaction to the process !! I suspect that even the allergic reactions are just reactions on the acidous waste products of which the body has to rid itself during/ after the process.
Have a good day - Yarrowleaf
Yarrowleaf, I think there might be a potential solution for my dilemma offered by Meatloaf9 below. I’m going to discuss with my specialist.
If the side effects are the same between Hydrea and Pegasys for me, I wouldn’t mind because I would have a bit more comfort in the thought that I’m not continually taking chemo. Just my option though, no disrespect to those who are on Hydrea. Thanks
Hi Kseely,
There is a medical Dr who posts on MPN Research foundation who takes Pegasys. He says that he gets the 180mg vials and using sterile technique he gets four doses of 45mg from each vial even though the instructions are to waste the entire vial after taking out 45mg. Said he would not waste such an expensive drug. I'm not saying to do that but if I were in the same situation I would definitively use every drop and do the best I could to keep everything sterile.
This is great news! Makes complete sense to me, but then again, there always seems to be some caveat! I will start the search to see if I can find the post and will definitely ask my MPN Specialist about that. Thanks for the info! Take care.
Sounds gorgeous -- I cross my fingers for you Kseely !!!
Greetings - Yarrowleaf
Hi, so sorry you have to face the high costs. I think i’ve read someone taking the required dose into a clean syringe and leaving the rest for the next dose. That way you could get 3 doses from one peg intereferon pen. Wishing you all the best.
Hi
I am on Pegasys since April, and have Bcbs and pay $35 a month. I don't think the pen is the right delivery method. I get a vial and load the syringe with 45mcg. You might want to check on the 180mg vial, might be less.
Hope it works out, for me Pegasys has been very effective.
Take good care.
Hi Indigo42916, I will definitely go with the vial route. Spoke with my hematologist and he said there’s ways around the copay. He was more concerned with how harsh the side effects would be for me. He mentioned I could possibly have 103/ 104 fever, flu like symptoms for a few weeks. I’m sure everyone has different side effects, however, I’d still like to try it out. Thanks for your response! Hope all is well.
You are welcome, by the way, no flu-like symptoms. Loose stools for a month but they resolved on their own. It is worth keeping in mind, we use a much lower dose than for hepatitis c, and side effects are dose related.
I wish there was a cheaper way. It was only free for me at the end of last year because I’d met my out of pocket max by having a baby. Not what I’d suggest for cheap Pegasys. LOL
Right now, my job has Cigna. 4 180 mcg vials are $250/month via BriovaRX; they’d be the same price if I went through Cigna’s mail order pharmacy, but I’m sticking with BriovaRX because they worked with MD Anderson to get me pushed through Cigna’s approvals process (where they “lost” my paperwork 3x).
I would do multiples, but Cigna and BriovaRX both flip out and start blowing up my phone to see if I’m okay (and if I really need the Pegasys), since I haven’t reordered and therefore “can’t be taking it as prescribed.” It’s stupid - it’s a waste of 3 doses every week, and you’d think Cigna would love saving the money. But apparently not. Yay, American healthcare logic. 
The dream is that ropeginterferon gets approved over here with a swiftness, and they have click pens that come in doses that make sense for what we’re all usually prescribed. I hate being wasteful.
I use Briova too, and throw out extra doses, unbelievable, because others can't get it. Economies of scale and rare diseases don't compute in this system.
Right? You’d think they’d be more than happy to adjust to save themselves money. Such a weird setup. It makes me wish I knew a neighbor who couldn’t afford it.
Hi lynxfluff, congrats on the baby! Thanks for the info. Spoke to my hematologist this week and he said there’s ways around the copay. His bigger concern were the side effects. So trying Hydrea for another month, then hopefully switch over to Pegasys.
I agree, the few things I’ve read about Ropeg seem promising. Wish US would catch up with EU. Apparently, it’s already approved of there. Thanks for the info! Hope all is well!
All, I just came across this. Hope it may help!
People taking Pegasys for their Polycythemia Vera, Essential Thrombocythemia or Myelofibrosis may now access resources to help with reimbursement issues through Genentech. For more information about the Genentech Patient Foundation and to learn if a patient receiving a Genentech product (such as Pegasys) is eligible to receive support, please visit gene.com/patients/patient-f... or call the Patient Resource Center at 877-GENENTECH.
newly diagnosed ET jak 2+
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