Hello, access to Gilenya Norvartis

Hello Norvartis employees.. After trying to get my wife on Gilenya, been 5 weeks and counting, finally got an email to Joseph Jimenez and Andre Wyss, (along with conversation with Wyss). I have discovered that this company or rather this MS Division Brand, whatever the pharm term lacking support. I have had the opportunity to deal with many medicines in the past 32 years regarding MS. What can I offer to Andre Wyss, for suggestions to stream line Norvartis MS division (Gilenya). I had read somewhere here that quote" Eaiser to get a liver transplant than on Gilenya" I concur. I can only convey my experience with Gilenya, Copaxone, Ampyra. and a few others, however patient access to Gilenya has been the worst.
I think it only fair to post my email sent to Norvartis CEO's, I dont know as a consumer weather my input will help, but willing to try.

CEO Joseph Jimenez
CC:AndreWyss
Tuesday 18,2014

Norvartis Pharmaceuticals

Hello Sir, I hope you are doing well, I hope you can help me help you. I have been trying to get my wife on your Gilenya in the US. My wife has had MS for 32 years, she has been using Copaxone for 8 years, however, she is unable to use the injection form of MS control any longer. It was suggested that the oral Gilenya would be beneficial to her. The application was sent to your people to ascertain this medicine. I have had the opportunity to deal with multiple pharmaceuticals companies in the past, and I must tell you, I am greatly disappointed in the Norvatis US conglomerate. I would like to advise you to take the time or direct someone to read your employee feedback at http://www.cafepharma.com/. I bring this too your attention because the net worth of a company, is about how well the company manages its priorities, an people. I had found this web site upon my travels to try to find out WHY Norvartis US is so disorganized, the best way to find this out is too see how employees feel working for this company. I came across a post quote. ”Its easier to get a liver transplant than get on Gilenya”. As a consumer I would agree to this statement. My wife and I have been at this process since January 14, 2014. We have found that Tecfedera only takes a CBC to start the medication. Gilenya, will still require a exam, ie, Monitored Starter Dose, EKG etc. I suspect with the time frame it will be another 2-3 months out to utilize your Gilenya. We have a neuro appointment Monday, 24th of January to see about Tecfedera, should be on it within a week. I have left messages to a Dagmar Rosa-Bjorkeson (MS Head) at your US)organization with no avail, as well as a Adre Wyss, with no response.


In closing , please have a nice day

 

Maybe just maybe something with be done with the MSBU leadership team. They all need to go. The ABLs are threatening to put reps on performance plans. Go for it. It won't help the dismal market share and patient dissatisfaction. This division is a black eye on Novartis as a company.

 

I applaud the caregiver for speaking out and recommend that you also confer with both patient advocacy groups and medical professional groups. Novartis and it's representatives fail to understand standard consumer marketing as it relates to payers, physicians, and patients.

It boils down to the relative benefit/risk ratio of Gilenya compared to other products. Novartis has built an elaborate yet complicated process to help over come the risk and work to receive Gilenya. It just reinforces the potential safety risk and work that payers, providers, and patients want to avoid. Novartis doesn't want to admit to marketing reality, so it places "yes" people in positions that turn a blind eye to the real issue. The new patient services group is lead by a person who comes from Governance and has no managed care or pharmacy background.

Novartis bully's and terminates people in HQ that stand up and challenge what some would consider common sense bad decision making. Good for you to stand up for your spouse against a company that really only thinks and cares for itself.

 

I did receive a call from my wifes assigned nurse, not having a navigator anymore. We are going Friday too have her workup done. So I do appreciate that Wyss did at least get that done. Woke up this AM, content that her Gilenya case is moving forward. However as a friend told me, "If nothing changes, nothing changes". I have a feeling there are many other patients out there having just a much difficulty getting Gilenya. It is a cultural thing?, Mr.Wyss is Swiss, and Dagmar, came from Sable. I see Norvartis is buying an merging other business's within its portfolio,are they growing to big, an missing the point a smaller stream lined company,with qualified people can make happier stock holders, an in this case.. MS Patients..? I guess from a caregiver, patient side of the table, my wifes MS @32 years, and at the mercy of Big Pharma, wifes last years prescription bill was 95K . I would think a company would bend over backwards to get that kinda of revenue. I have an idea, when looking at some of the other medicines, ie copaxone, amprya from my experience they TEVA an whomever make ampyra manufacture, they DONT market within their company... I know Shared Solutions (copaxone) has been wonderful. Last week we got a postcard, saying that copaxone is going from 20mg to a 40mg injection. I suspect its because they are going to loose their market due to generic has been OKed.
Am already an have been very involved with MS support groups, as suggested. I wish the employees good luck, as well as Norvartis, but if nothing changes, nothing changes an it will be just a matter of time. Another thought. at 95K script bill a year, its about customer service, I am of the thinking an have always been, since a young man. Willing to pay more to
a competitor if the service an access is there.

 

I think you understand who and what is wrong with Novartis, if you have to e-mail the executives in the organization to get action. If you have to go to that extreme, are you sure want your wife on a medication from a company with questionable commitment assuming your wife has other treatment options available to her?

 

I have considered this exact question, however I have read too extreme the efficacy of this drug, and for now it we are going to give Norvartis a shot. Gilenaya is about $450 more a month for their medicine, but there comes a time, when cost is of unimportant given the benefit. I have never been a big defender of Big Pham, reason being when you are sick with a chronic disease and Big Pharm knows it they will charge whatever they can to increase their profitability.

 

I hope you have great success with Gilenya. I applaud you for being such an advocate for your wife and fighting for her to receive the medication. The US health care system is a joke. Its criminal that patients don't have access to the drugs they need. Can't believe people want the system to stay the same. I don't know why it takes a chronic illness or the loss of a job and therefore healthcare for people to realize how quickly they can spiral into financial ruin. Insurance co. control what physicians write. Pharma jacks up the price in the US, because no other country is so stupid to put up with it. The US doesn't even provide the best healthcare in the world but is the most expensive. Pharma is obviously doing just fine in other countries and still making $$. Yet some people still continue to buy the spin that we have the best system and how horrible it would be to do what 99% of the rest of the cilivized countries handle health care for their citizens.
This is a moral issue. I'm all for making $ but how much money is really necessary. Then they drag us to meetings talking about how its all about the patient. Be better if they just admitted they need to suck every red sent out of this country while they still can.

 

Pharma in the US also employ 2 times more marketing and sales heads per capita and spend 4 times as much on marketing in the US. The "disfunction" that you describe above is why most of the people reading this site are employed.

 

It takes a lot of people to sell "snake oil" these days! Too bad that from a reputation and trust perspective, Pharma ranks second from the bottom.

 

This thread can't be real. Why post on a site maybe 500 people would read? Why not take it to twitter? # novartis for the entire would to see? This is BS.......I wrote Andy.......really?

 

Not sure how your response is helpful too me as an advocate for my wife,nor for trying too help with the improvement getting this medicine too patients. I would think,from reading the threads here posted by employees of Novaris,there appears too be some questions regarding treatment of this companys employees. As far as twitter, I have no clue as too how too use it,nor is it about I'm guessing you meant too say "The world too see" not interested in the world too see. How would that be helpful,when the target class are employees of Norvartis. I would appreciate if you have anything of helpful insight too share, if not maybe you can read helpful responses an take it upon yourself to help improve Gilenya patient access.

 

I would agree, patients like my wife and many people are at the mercy of Big Pharm. if you need the drugs too have any quality of life you are at the mercy of the snake oil. I have hopes of the Gilenya,will help, its Not the drug I have problems with nor the price @$5800 a month but rather its ease of getting it too the patient. Last years meds for wive was 95K. So at that point now its about service,another $1000 here or there becomes irrelevant. When I talked to Mr. Wyss, I explained that tecfedera is about $1300 cheaper,only requires a CBC within 6 months of starting the drug. Could have my wife on competetor drug in a week,if you cant get Gilenya too the patient quicker,even after asking more $ for Norvartis drug, then the only edge Norvartis has its service,and with no improvement there then,the projected 15% of market Norvartis wants will not happen.

 

Stop using the word "too" wrong. Your friends at "Norvartis/Novaris".

 

Too bad Mr. Wyss hasn't done more to push for a low dose induction trial for Gilenya that might address the cardiovascular risk and all the extra monitoring or the addressing the "crappy" packaging that causes patients to break capsules. Next time you talk to Mr. Wyss, ask him why Randi Roberts was let go from the organization, when she is probably the biggest patient advocate for MS patients in the MS BU!

 

"Profits before patient lives" - the NVS way!

Scholarly papers have explored whether standards are too loose. One article, published last year in the Journal of the American Medical Association, called particular attention to three products — AstraZeneca PLC’s cancer drug Caprelsa, Novartis AG’s multiple sclerosis medicine Gilenya, and Boehringer Ingelheim GmbH’s blood thinner Pradaxa — and asked whether their risk-benefit profiles made priority review inappropriate.

The safety record of the drugs raises the question “of whether it was good policy to approve three innovative new drugs with significant safety questions unanswered and with optimal doses not determined," according to the researchers Thomas Moore of the Institute for Safe Medication Practices and Dr. Curt Furberg, then of the Wake Forest University School of Medicine.

In a second article published just days before the freeze on Iclusig sales, the same authors found that drugs receiving expedited approval in 2008 typically used data from trials with less than one-fifth the usual number of patients and that progress was slow on completing mandatory post-approval studies.

In some recent years, nearly half the new drugs cleared by the FDA have used expedited pathways, raising the stakes should those routes be called into question by a review of Iculsig's approval.

“The question one has to ask is: Were there ... safety signals before this?” Kupchyk said. “That might be something that FDA and others wants to look at more closely.”

 

I am a Rebif/copaxone failure experiencing similar problems with the Novartis Patient Assistance Program since Jan 10, 2014. The stress of these interactions are completely unbearable. Document every phone call and every interaction, not only are you fighting for your wife but you are fighting for ALL of us who experience this ill mannered behavior.
I am ashamed to admit that I am a former novartis sales rep and this site is well known in the entire industry.

 

Obviously this is written by either a competitor or disgruntled employee. My wife was on within a month from the date the Physician wrote the order. Working with the Novartis Nurse was so helpful. I didn't expect it to run so smoothly since I work in the Medical Device Industry.

 

Obviously you do not know the problems getting the patients on Gilenya. Your wife is the lucky one, many are not so lucky.

 

She is the few that go through with ease.Congrats and go by a lotto ticket. Im willing to bet that her doctors office is very organzied and does FDO in house. This limits the involvement of Theracom ( a dysfunctional 3rd party company that should have been fired two months into launch). When Theracom has little involvement, things go smooth. Also, your wife probably called her Gilenya nurse back when needed, which makes a big difference. Nothing is more frustrating for a rep to have a Dr. try Gilenya for the third time hoping things will be better, but finds out that nothing has changed. Then I hear from my ABL that my sales are down because Im not using my IPad or Breakaway selling. We all told upper management...if we couldnt find a way to steamline the process (AKA get rid of Theracom) before the other orals hit the market, then we are gonna get our asses kicked. I think we know what is happening. Which sucks, because Gilenya is a dam good drug, just in the wrong hands since launch.

 

FDO - First dose observation for non-Novartis employees

Wrong management from launch. Too much micro management. Many Neurologists turned off by upper managements tactics