Starting Besremi

[EPguy]

I will join the Besremi party next week. Here is a picture of the stuff that arrived yesterday. For $15,000 you get a "free" electronic timer and a pair of very soft socks.

My Dr wants me to be at the office for my 1st doses. As Hunter noted, one good reason is in case there is an allergic reaction, similar to the 15min wait after covid shots. It seems the office is also curious about the process as I'm patient #1 there.

A catch is the Dr cannot actually give me the shot since I am bringing it from home. So they will instruct me and then watch as I stick myself. If I did it again I would ask the box be shipped to Dr's office for the 1st doses. Something to consider if you encounter the same issues.

I will post any updates as others are doing.

[Hopetohelp]

Sooo exciting! Good luck! I’m intrigued. What’s the timer for and why the socks? To keep your feet warm while you wait 15 mins at the docs in case heating breaks down?😂

[EPguy in reply to Hopetohelp]

Timer they list as for the 15-30 min warmup time for the juice out of the fridge. Dr says warming is to prevent painful sting of cold going in.

Socks are a mystery. We'll use in it our micro RV.

[Hopetohelp in reply to EPguy]

You see that’s what I love on this site, you learn something new every day. Always wondered why they suggest warming it up. My mind escalates to thinking it would work more effectively but no, it is simply to protect ourselves.

[Wyebird in reply to Hopetohelp]

🤣🤣

[mhos61]

The best of luck to you.

[hunter5582]

I got the same kit. For $15,000 we should get some tchotchkes! I thought the timer was kind of silly since it is just for letting your Besremi warm up. The socks are kind of cute. I made a point to ask the Biologics nurse about their purpose (a bit tongue-in-cheek). They are just a little gift in Biologics colors. The colors are the same as WVU. Go Mountaineers!!I gave mine to a friend who is a big Mountaineers fan.

You will be getting calls from a Biologics nurse doing follow up once you start Besremi. If any issues are reported, you will get ac all from PharmaEssentia too. I will give them credit for being thorough. Guess that $180,000/year buys you a few belles and whistles. No one ever called my about Pegasys.

[EPguy in reply to hunter5582]

You're right about all the $, they are surprisingly easy to get a hold of.

Note my new handle, see for what it's about.

healthunlocked.com/mpnvoice...

[hunter5582 in reply to EPguy]

Biologic does get credit for their level of support. Very helpful.

[katiewalsh]

I hope you don’t mind these questions; I’m trying to figure out how to get on Besremi. Can you please tell me how you qualified for Besremi? Do you have PV? Do you & Hunter have to pay $15,000? Thank you. Katie.

[EPguy in reply to katiewalsh]

My actual Dx is PV, with clinical features of that. I have some elements of ET, so I like to call it that.

It's actually 180k/year, quite costly. But I have commercial insurance which covers it. My Dr dealt with the insurance Co and it was not a problem. But it could depend on which type of insurance you have, for example an HMO might be more troublesome than a PPO. but maybe not, we'll hear from members on this..

[katiewalsh in reply to EPguy]

Thank you.

[Paul123456 in reply to EPguy]

So do you think you have ‘masked PV’? My first BMB was ET, second (from the experts at Guys) was PV, MPN-U.

For those of you who have switched to Besremi, can you please explain why your Hems have prescribed this in place of Pegasys?

[william-Indo in reply to Paul123456]

Yes, please let us know the reason

[EPguy in reply to Paul123456]

My documented Dx is actually PV. See my recent post here for explanation and my new more descriptive handle. Maybe MPN-U but my Dr did not describe it that way. I will ask at my next visit.

healthunlocked.com/mpnvoice...

I've not switched, but as Hunter and I have discussed elsewhere, Bes is likely to be better tolerated than PEG and may be more effective via its more even release into the body.

See this post for my take on the differences:

healthunlocked.com/mpnvoice...

[Meatloaf9 in reply to EPguy]

Hi ETGuy, when you say your insurance covers it do you mean that your cost is 0. I wonder what those on Medicare have had to pay as their copay. I hope to switch when I go back to my MPN specialist but fear that it will be unaffordable. Thanks for any information. Best of luck to you going forward.

[pepper- in reply to Meatloaf9]

I started Besremi a couple of weeks ago. I'm in Southern California Kaiser HMO and using Medicare. HMO listed Besremi as a Tier 5 drug so my max yearly copay will be $7,000. After I hit that max my dose cost will be around $15 each. So if I start a beginning of year (max copay resets at end of calendar year) it will cost me about $600/month for full 12 months. Your out of pocket of course will depend on your insurance particulars.

[Meatloaf9 in reply to pepper-]

Thank you for sharing that information. My understanding is that you pay the bulk of that amount in the first 3 or 4 months and then the rest of the year the cost is less. So I guess if you started in December your cost would be 7000. for that one month and then start over again in Jan?? Thanks again for that info. That is still a big difference between the 5.00 per month that the HU costs me.

[pepper- in reply to Meatloaf9]

My first two syringes cost me $2,900, so I'll hit that $7,000 max copay at the 5th dose. And yes, your average calendar per dose cost will definitely be higher depending on when you start within the 12 calendar months. If I started in December with two doses my cost would be the $2,900 for that month, with the max copay being reset to the $7,000 as of Jan 1 the following month. So, to minimize the average calendar monthly cost you want to start at the beginning of each year. HU, being an old off-patent chemo drug is very cheap and for many years prior to the current patented drugs was the only option available. Hence, it became the "standard" treatment that has largely carried over to this day. But I avoided it because I consider it a systemic "non-specific" chemo drug with possible very negative outcomes over time. Many hematologists would disagree with that characterization. Besremi has black box warnings as long as my arm but interferon is the ONLY drug that has demonstrated the possibility of causing a remission at the molecular level, and ropeginterferon Besremi is the generally better tolerated versus Pegasys peginterferon. At the end of the day, PV treatment effectiveness is a bit of trial-and-error (or trial-and-tolerance) experiment on yourself. What may work for one may not work for another. Best of luck with HU.

[Meatloaf9 in reply to pepper-]

Thanks for sharing that info. It is very informative. Best to you also.

[katiewalsh in reply to pepper-]

That’s really helpful info; never thought about the wisdom of not starting a high cost drug in November or December. Thanks.

[Elizka in reply to pepper-]

Hi, I also avoided HU. I personally felt like I wanted to take some that could have an impact on my PV.

[EPguy in reply to Meatloaf9]

Correct, my cost is 0. I'm assuming there won't be a surprise bill in the future, pharmacy said it's all covered.

There is a "Co Pay" card the mfg issues to cover the 300-500 co-pay that was left. I requested it early so I had it ready when the pharmacy was ready to ship (they were surprised I had it) . This all applies only to commercial insurance, Medicare has different procedures as Hunter has discussed. They don't allow CoPay cards in effort to keep the procedure ethically clean (something about kickbacks, it's been in the news)

[Elizka in reply to EPguy]

I have an HMO with a good prescription plan and there was no cost for me for Besremi.

[hunter5582 in reply to katiewalsh]

I have to pay $100/month copay until I reach my annual cap of $2000. The copay and annual cap vary widely based on your insurance plan. I am on a Medicare Part D employer/retiree plan that is managed by CIgna. It is a very high-end plan. Not everyone is as fortunate.

The saga of getting Besremi approved in something I posted about separately. I was initially denied and had to put a lot of effort into getting it approved. It is very important to understand how your plan works, including how to appeal decisions when denied.

Generally speaking, your hematologist prescribes the Besremi, which includes submitting a form to PharmaEssentia. From there the prescription goes to one of the three Specialty Pharmacies that provide Besremi in the USA. The pharmacy then seeks approval from your insurance plan. How much of that process you are aware of depends on how your plan works and what you choose to look into regarding the process. much may happen behind the scenes that you may not see.

Hope that answers your question.

[katiewalsh in reply to hunter5582]

Thank you. I will save this info along with what you’ve previously provided. I’m not sure I’m officially PV so am thinking I’m unlikely to get approved. I’m sorry but it’s total “horse pucky” not to give everyone a drug that might save their lives. Course drug companies are known to be totally unconcerned about anything except their financial interests. At least that’s true here in the US. I hope you do well on it. Katie

[FG251]

Fingers and (warm) toes crossed for you!

[Wyebird]

How often will you have to take the injection$15000 is an awful lot of money. Will insurance pay? Thank goodness I’m in the UK

[EPguy in reply to Wyebird]

As seen in the posts here, my Ins is covering all. But as typical in the US everyone gets different coverage depending on which insurance. A trade off is supposed to be quicker access to specialty care. I have had that available to me, but still that depends on which insurance.

I would not be surprised if the Ins cos have negotiated a lower cost than what we see.

[Wyebird in reply to EPguy]

Thanks so glad I have the NHS

[Aldebaran25]

Enjoy the party ETguy ! Good luck !

[Mazcd Partner MPNVoice]

good luck hope it goes ok, and love the socks. Best wishes, Maz x

[Cja1956]

Wow! These pharmaceutical companies are getting rich off us sick people. Must be a a pretty fancy timer and socks woven with golden threads. 😂Seriously, though, I wish you the best outcomes with Besremi. Keep us updated on your progress.

[EPguy in reply to Cja1956]

An interesting point is they could reduce the cost quite a bit if they arranged a way to avoid trashing the unused portions. For example my starting dose is 50mcg, while the syringe holds 500, so 450 ($6,300 ea dose) will be tossed. If a Dr's office or pharmacy has multiple patients this could be divvied up amongst them. That's what a compounding pharmacy does. But seems there is no financial incentive at any stage of the process to do this.

[josup26]

Hello ET guy, I wish you the best of luck and hope you find great results. Please let us know how you make out. I'm seeing my Hemo next week and this will be a top subject.

[Bluetop]

Good luck with it! Keep us informed.

[Elizka]

Welcome to the party. My husband gave me my second dose today. So far, no issues. I also started at 50mcg for the first month. Hope all goes well for you, ETguy.

[yarrowleaf]

😆😂 This sounds rather silly to me !! But I suppose the socks will be a great win-win !!!

Oki-- if you feel safe about it, I suppose it is ok !!

I cross my fingers, it won't create miracles but..... I would feel more safe about a "make your own kite"-kit !! Though !

Yarrowleaf

[Hidden]

Yes all the best and look forward to your reports. I looked up the cost to buy a single 250mg Pen direct from a pharmacy in Germany would be 1685€. The state has contracts with providers so purchases it at a much reduced price. Patient contribution would be 10€ to the state.for each prescription Believe it was approved here EU in 2018

[EPguy in reply to Hidden]

Thanks for the Euro info. That's the cash price, correct?

I think that works out to ~USD 4,000 for 500mcg, quite a bit lower but in the order of our price at 7,000. Except the 250 size is less wasteful, so it's more like $2,000, since it's half the waste in most cases, that is a very a big diff.

I recall it was approved in Euro in 2019. Difference is it's sold by AOP orphan, the guys that actually ran the trial. So AOP is likely setting the syringe sizes, and to some extent, prices. AOP went after PharmaEssentia in arbitration because PhE wanted to bypass AOP after AOP did all the trials. PhE lost, see below.

So PhE gets their dessert from the Americans. As I see it they got a free phase 3 trial by AOP and then get the big bucks over here without the middleman. But AOP is not just a middleman since they added much value by running the trial. (Proud PV-Conti PV)

aop-health.com/global_en/ou...

<<AOP Orphan reports full validity of arbitral award against PharmaEssentia>>

[Hidden]

Thanks EPguy ( like the new name) thats very interesting. The price is the cash price. For comparison Peg 90mg is sold 166€ each syringe.Again the patient pays 10€ . Interestingly Aspirin isn’t as cheap here as in the UK or probably US. Non prescription but can only be purchased in a pharmacy. Supermarkets cannot sell meds of any sort. No real competition

[EPguy in reply to Hidden]

So a common dose of PEG is ~1/10th the price of European Besremi. That is quite a difference. Bes will need to show a real advantage with that.

In US aspirin is cents per low dose pill and avail anywhere. Surprising since it was invented in Germany.

[Beup]

I liked seeing the picture and best of luck to you!