I am somewhat shocked at seeing PV commercials on national TV. The condition is not well known. Many nurses are unaware of it.
The only explanation I can think of is big pharma came up with something very expensive. They would never have a commercial for Hydroxyurea due to the fact that it is dirt cheap.
Any opinions?
I'm not aware of any commercials. When was this? It too makes me wonder about the reasoning behind it. Pippa
I have a bit of trouble navigating this site. Maybe a little fog from ET. ha, ha. Don't know if reply went through. The commercial has been running a lot on national news at 6:30 Eastern time USA, I think ABC for sure. Talks about slowly changing symptoms, fatigue, and shows people itching. I have seen it many, many times.
But, unlike most pharma commercials, there is not a large group of models in a music video who are jumping, dancing, smiling, running on the beach, and don't forget all the tap dancers!!!!
I saw that ad and did a triple-take, I was so surprised. It was by Incyte Pharma. They produce Jakafi® (ruxolitinib) to treat MF and PV. Here's a link to the ad: ispot.tv/ad/o6XK/incyte-liv...
My question, once I got over the shock, was exactly what you asked -- why are they doing this, given how small the market is for their product?
Proving I have way too much time on my hands (thanks to our friend, fatigue), I just looked at the 2018 Incyte annual report; their revenue increased over 20% from 2017 to 2018 -- "net income grew to a profit of $110M for 2018
as compared to a net loss of $313M in 2017" -- and they credit the major portion of that increase to Jakafi. The medication is very expensive -- far and away more than HU (although they have plans to help people who can't afford it). So, I can see why they'd be invested in promoting it any way they can.
I'm very cynical about big pharma, but however self-serving their activities might be, I've found what Incyte does to build awareness of MPN and support patients helpful. They funded the Landmark Survey to identify and verify MPN symptoms and put together a summary of results for doctors, which I gave to my doc -- (mpnlandmarksurvey.com/pdf/m... as well as other research -- and they support the Voices of MPN website.
Whew. That's it for the rest of the day 
Kim
Wow, Hydroxy is expensive in the UK. Thank goodness we are exempt from prescription fees with the condition we have.
I am on generic(Hydrea) and its about a dollar a pill. Not bad compared to most drugs.
Hi jilly, Hydrea is very inexpensive in the UK. One Haematologist at my old Hospital actually told me that and thats one of the reasons its the first line of treatment for Et and Pv. Atb,tina.🤗
The flip side to the profit motivation that drives the pharma industry is the fiscal motivation that drives health care systems to choose cheaper medications even if they do not work as well and have more adverse effects. In many systems doctors are employees who have to follow a money-driven formulary rather than use their own best medical judgement in regards to what is best for the patient. The best thing any of us can do is to understand the system in which we receive care and be tireless advocates for ourselves. Assertive patients receive higher quality care. Passive patients do not. No health care system is perfect, so we do need to look out for ourselves,
Hi
I think that its only in the USA that drug companies can advertise prescription drugs directly to patients: not allowed in the UK. My concern is that a major downside of Jakafi/rux isn’t mentioned - the association with aggressive sarcomatoid squamous cell skin cancers, especially if people have had a skin cancer in the past.
That’s what happened to me when my rux dose was increased from 15 mg bd to 20 mg bd , and has created a whole new world of risk, pain and uncertainty for me. In the USA that list would include crippling expense as well. The skin cancer was excised in May, but may have recurred: another lesion was removed 2 weeks ago and I’m waiting for the result.
If Incyte know about the risk, they are being cavalier in not warning people who might take Jakafi in ignorance of the additional risk they run if they have a history of sun exposure caused skin cancers.
Rachel
Hey Rachel...
I have been on 20 & 25mg bd for quite some time now, and I seriously hope that the "...aggressive sarcomatoid squamous cell skin cancers..." you mentioned above are really caused by HU, (although perhaps exacerbated by Jakafi?), and not caused by Jakafi itself... Otherwise I might soon be in for one heck of a terrible landing... (?)
If the MTX Trial I am doing can lower my platelets enough, my next step is to commence reducing the Jakafi slowly, almost instantaneously upon receiving that news...
While I am very grateful to Jakafi for at one stage giving me back some mental clarity & QoL, I really am hoping that I can get off it altogether someday soon... (If that's safely possible for me to do?)
Will be interesting to see how this MTX trial continues to unfold...
Best
Steve
Hi Steve. Google ruxolitinib and skin cancers and the research comes up. Use lots and lots of sunblock. If you’ve had a bcc or two ( and who hasn’t, in Australia) keep an eye out for any new lesions and see how fast they grow. Haven’t put photos of how mine developed on this site in the interests of privacy, but do take it seriously. Rachel
Hey Rachel...
Yes, but please do beware of Dr Google... (hazardous at times...)
Rachel, I do have many, (Non-conflicted, scientifically derived, peer-reviewed articles on HU in particular), that clearly suggest that HU is responsible for much of our dermal damage. However, there is also one in particular that Points out, Ruxolitinib further exacerbates that damage caused by HU...
Either way, I would much prefer to limit my exposure sooner rather than later of course... 
Steve
My hematologist said that he would never put me on it because it’s too dangerous and not worth it. You may want to consider that.
Hey there...
Some of those fears might well be true... Unfortunately, and as is the case with many of these highly toxic drugs, many of us have very few other Options available to us if we are to slow our MPN progression etc...
That is the main reason WHY I am personally undertaking my Australian Fundraiser to bring much greater Awareness to the Australian fora about the insufficient level of currently funded MPN studies in Australia...
We need more treatment Options, more MPN Specialists, and hopefully someday... a better curable Option... than those that exist today!
All that said, if it were not for Ruxolitinib, (in my own case), I might well still be a slobbering mindless, speech-impaired, cloudy-headed MPNer...
Jakafi did actually improve my overall Quality of Life (QoL), and for that I am most grateful... 
Steve
My husband saw the ad first. I thought maybe he had it confused with something else. But I’ve seen it a few times too. The times I saw it, it didn’t advertise a medicine, but at the end saw it was from Incyte. I, too, am skeptical of Big Pharma and wondered why they’d advertise for a “rare” condition. Your insights are interesting. I couldn’t help but wonder if they are trying to drum up business... saying symptoms can come on slowly: fatigue, night sweats, itching. Those things can apply to ppl for other reasons. Or maybe more ppl have it but don’t get diagnosed before they stroke out and die? So, I’m still not sure if they might be trying to help ppl with MPN’s or make more money. But as a cynic, I can guess...
Hey guys... :-0)
Fascinating 'Insight about Incyte'... Sorry couldn't resist...
The governing paradigm in our western world is fairly obvious... Is there really any mystery as to motive?
In Australia, antibiotics & pharmaceuticals are not supposed to be marketed either, but they do nevertheless, just somewhat more subtly is all, in my view...
My understanding is that they must be hoping to broaden the market for Jakafi...
Bigger net, more fish!
Shall be interesting to watch all this evolve I suspect...
Steve
(Sydney)
The ad is not shown in the UK but I looked it up when this was first mentioned in the forums a few months ago. It may be an ad for Jakafi/Ruxolitinib but raising awareness of PV is a good thing!
We don’t have the same hysteria over “ big pharma” as you do in the US!
The last time I looked up the monthly cost of Jakafi in the US it was about 15,000 to 18,000 USD per month retail price. A good reason for hysteria if you need it and have to pay retail.
Hi! Yes my husband first saw this commercial at 3:30 am while leaving for work and they are now the same commercial at my hematologist office. I take Jakafi which is the experimental and freakin expensive meds, so that may be the gateway. A lot of doctors and nurses are not aware of PV and they don’t seem to grasp it when it is explained. Interesting.....
It really don’t get it either. Actually, from the 30 doctors I know professionally and personally, only 1 knew what ET was. He is the ophthalmologist, who saw me two days ago regarding my low pressure glaucoma, which has not progressed since my treatment for ET started 2 years ago. He confirmed what I always have been saying all along, that my type of glaucoma was started by my thick, sticky blood eight years ago. He said that he was surprised that my other eye doctor didn’t do a blood test in my situation, in order to find the root cause of my glaucoma.
I believe my Anagrelid costs 10x what Hydroxyurea costs. HU is cheap. Maybe they are trying to get people to use it for other conditions, like other medications? Nevertheless, I have always thought that advertising on TV for drugs should be prohibited, except for over the counter products like nasal spray. In the US, it seems to be every second commercial! In Austria we have virtually none.
Perhaps Incyte are worried because of new drugs and treatments coming through like Pacritinib and are using adverts to get a bigger share of the market before sales inevitably decline because of competition.
Yes. But isn’t it the doctors who help the patients choose the right med and not the patients alone who request medications? Why would this be advertised to patients? I remain curious. Cheers. Anag
FATIGUE - PV
PV diagnosis
PV Ehaustion
Pv or NOT PV ?
