Now, you know how much I like to approach life from the view-point that the glass is half full, but today, Mylan (the maker of our beloved Dey Epi Pens®) has a glass that is half empty for many reasons that are quite upsetting to our food allergic community. We rely on epinephrine to help save lives in the event of an anaphylactic reaction or severe asthma attack. Therefore, we rely on Mylan to do the right thing–consistently.
SPECIAL NOTE: I am not participating in my usual linking to companies, etc. since the Mylan’s website is perfectly useless today. If you attempt to link to www.epipen.com, you are immediately directed to the PDF of prescribing information. Good if you are physician prescribing epinephrine, bad if you are a user like me.
The top 5 reasons of why I am UNHAPPY today with Mylan Speciality, the makers of Epi Pen® and why you should possibly be concerned too!
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- Their website has been useless all weekend long. From a major company providing emergency life saving medication, this is just sub-par, I expect more from a billion dollar company. Sorry dear folks at Mylan, sometimes we all need to hear the painful truth so we can improve.
- Our beloved Epi Pens® are still only available in two packs. If you barely afforded the single pack, are you able to purchase the two pack?
- No assistance program has surfaced since the discontinuation of the single pack. If it has, I have yet to find it on the internet or on their website. After I spoke to a team of concerned VP’s at Dey (Mylan was not in the picture yet), they promised an assistance program to help out those who can’t afford the two packs. Check out my blog explaining this in better detail.
- Recent television commercials and print ads send inaccurate messages. Again, I expect more from a billion dollar company.
- Speaking of billions…“Mylan said revenue from specialty drugs climbed 67 percent to 2.3 million. The company handles the U.S. marketing of Pfizer Inc.’s EpiPen, a pre-filled syringe that is used to treat severe allergic reactions.” Mylan’s specialty markets offers five drugs.
I am disappointed and quite honestly, a bit nervous. Truly, we rely on Mylan and this series of missteps have me concerned about their capabilities to deliver. The new commercials being aired in my community left my son running to find me to complain about how they are dangerous. He said he felt that the commercial did not portray the truth that food allergies can be fatal and that the commercial he just watched indicated an allergic reaction could only amount to hives and itching. I did not see it, but he was quite upset and worried that all his hard work of explaining how serious his allergies are will be voided. In addition, they recently pulled an ad that very misleading about risk taking with food allergies. I applaud their quick response to the community outrage by removing the ad quickly.
In the recent May 14th edition of People Magazine, the Epi Pen® ad I discovered had an incredibly poorly worded statement of, “If only it were this obvious” next to the cake. If the marketers understood the management of food allergies they would know that our motto is strict avoidance–especially at birthday parties, hence why the majority of us send a “safe” cupcake to parties! I think Mylan is signing to the wrong choir.
photo courtesy of bakerhomeenergyconsultant.com
Unfortunately, the local Mylan rep for our area has been replaced, so I will be hunting down our new rep as well as calling Mylan’s Customer Service line this morning to express my overall concerns. I’m also anxious to ask why the Assistance Program has not been made available and why is the Epi Pen® website down. The folks I spoke to previously promised the program no later than December 2011.
Dear folks at Mylan, I’m not sure what is happening internally, but please understand we rely on you to keep our children safe. Please don’t let us down.
Has anyone been able to get onto the Mylan website or have a link to the commercials over the last few days? I would like to see the ad my son saw-Caroline
Update as of Tuesday evening, May 8th, 2012: I was transferred twice trying to find the customer service department to inquire about Epi Pens® and I received a voicemail. I left a message yesterday and still no answer?!? This is just down right odd!
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One of the hardest things I find about managing both life threatening food allergies and asthma is talking to others. I hate to be the one that might be perceived as demanding, pushing or for asking too much. What I now know, fourteen years later, is that honest, clear information presented with kindness works!..
Totally agree. The two pack cost us almost $200 out of pocket! I wish FAAN would stand up to them…
This is really quite stressful! I was impressed last August when Dey called me to ask for more details, but am extremely disappointed nothing was done and Mylan, who has taken over Dey seems to be struggling. Have you tried any of the online coupons? I saved $20 on a 2 pack by using medsavercard.com. Try them? hang in there!
Thanks, I will look into that for next year, looking forward to the generic!
the change to epi pen availablity by Dey (purchased recently by Mylan) has everything to do with a lawsuit filed by Pfizer regarding the sale of the generic med. it was recently settled & Pfizer has the contract to make & provide supplies of the med to the public with a prescription through 2015. hopefully, we’ll see changes at the pharmacy soon.
Judie, Dey explained to me back in August the choice to not sell single packs was since the NIH suggests always carrying two. Which truly is a good plan! Carrying two provides backup in case one is misfired. Sadly, it is all about those increased profits. Although, a competitor will hit the scene in about year…I’m doing my homework now it. So, we’ll see! There is a generic out there now, but I believe the US Government bought them and they are available on Native American Reservations–now don’t quote me on that, I heard it from a nurse who uses them.
it all comes down to business & capitalism: the current patent is for the trademarked name EpiPen. no one can make a generic till the contract expires. once it does, Pfizer will make the generic version. the only way to ‘fix’ this is to change policy at the federal level because this rule about patents applies to EVERY medication.
I just read a blog from a lady in Maylasia who can no longer get Epi Pens since Merck (who distributes it there) said the demand isn’t high enough? So, she is going through a hospital to receive an alternative. Sad. Interesting that Pfizer will make the generic since Mylan says Pfizer is their marketing arm. So does this mean Mylan is trying to create an monopoly? Very sad indeed, but we all must continue to fight the good fight!
there are economic factors to the current pharma policies -the cost of creating the med is very, very, very high. the patent protects the company & helps them recoup costs…. but, leaves us with very expensive meds & other problems.
changing policy can help improve the system for all concerned. currently, there are children dying from certain cancers because the pharma companies have no incentives to continue making the meds without a patent. there’s no $$ in a generic. my guess is that the use of epi in emergency medicine will save it from the same fate.
I agree with you Judie, the “emergency” part should carry some weight! See you on Saturday at your going away bash!
i am concerned, i recently found out that i need epi-pen, sitting with 258.00 script, and no income, or anything, and am finding absolutely no assistance , in obtaining this med. what to do, where to go for help.
Jim- please contact Care Chest 775-829-2273; Walgreens has a prescription discount program; & NV Medicaid for your meds. Alert family & friends so that they can help you offset the cost (that’s what your support network is for!). Keep liquid benedryl on hand at ALL TIMES.
Hi Jim,
Which state do you live in? Call your local health department and stay persistent, yet very polite and explain that you need access to a clinic or county service that could help purchase you epinephrine (Epi Pen). In Reno, we have the Red Field Clinics and HAWC clinics that can along with a program through St. Mary’s. Please reply with the area you live and I’m sure someone in our food allergy tribe can find something out.
STAY EXTREMELY diligent about avoiding your allergen and DO NOT take risks.
Also, there are many local charities that help in situations like this too..you just need to pick up the phone and start calling.
Hang tough!
My pharmacist just told me to look at that cost as an Insurance plan…you have it if you need it, but I look at it if you dont you are throwing that money away, have had some episodes but was always near a hospital to have it taken care of.
Jim, you are right. As much as I cry in August when I buy epinephrine for two kids I remind myself it is far cheaper than the cost of only the ambulance ride. check out http://www.needymeds.org…click on First Time user…they list patient assistance programs and coupons!
I am severely allergic to bees. I am out of epipens …went to the pharmacy to pick some up and the associate says that’ll be $237 please. I said what …she said your insurance won’t pay because you have a $3900 deductible and you still have to meet $2200. I thought …are you crazy we won’t meet this not even this year! I need help…I just had to go to the Emergency room for a bee sting. I can’t afford the needle …I could die. The insurance company said, “Well I guess you’ll just have to come our of tour pocket “. Can I help toy with anything else. So unconcerned and rude. Taking my husbands paycheck..
Latrice- A pharmacy is a business, just like the drycleaner. It is not the pharmacist’s or tech’s job to care about you, but to provide you with a service. It is imperative to know what your insurance covers & the cost. Before changing pharmacies, take a breath… you have a relationship with the pharmacy (and its computer) that involves your health information. Switching might put your health in jeopardy and cause more problems with your insurance company.
First… call your provider and have the deductible lowered, if possible. Second… have friends & family help pay for your epi pens. Keep the expired ones if they are less than 2 years old. Have liquid benedryl at all times, wear your med-alert bracelet at all times, carry your med list (complete with allergies & doctor’s names) in your wallet at all times. Third… have your friends & family take a CPR/First Aid Class. Fourth… inform your doctor of your inability to pay for the epi pen & discuss other treatments, like kenalog. Fifth… peruse Caroline’s blog & use the resources to find the most affordable epi pen for future prescriptions.
Latrice, I feel your frustrations. I am about to drop almost $1,000 today on 8 Epi Pens for my children. They need them at school and at home. Our area can be fairly rural, so our emergency response time could be too long. We have a high deductible too. We did sit down today and my husband and I re-evaluated our insurance and both agreed that the high deductible plan was still worth it…BUT…maybe I should look into a part time job with medical benefits. This is something I will look into. Latrice, you and I are in between a rock and a hard place. I’m sure you don’t probably don’t quality for patient assistance but the costs are out of control. I’m praying the with the new introduction of the Auvi-Q in Winter, we’ll see some prices drop. I keep hunting down those discount cards like crazy too. Also, ask your doctor if he has any coupons as well. Plus, visit http://www.needymeds.org on a regular basis (click on the First Time Users link) to see about coupons, etc. Good luck. I know what you are going through! It is incredibly frustrating!
I find this epi pen fiasco dishearting. I have purchased a single epi pen for five years now and was surprised to find I could no longer do this. My problem is an allergy to insect stings. I have been very careful to avoid these insects and so each year at the experation date I turn my pen in to the pharmacy and pruchase another. Having to pruchase two pens is absolute luncy. I don’t know how people that need to purchase more than one pen for their children can afford it. SHAME on Mylan and Dey. I can’t believe the company wasn’t making money from selling single pens.
I still worry about how many people simply stopped purchasing them! Although, Mylan does have a special $0 co-pay or $100 cash pay program running until Dec 31, 2013. Call 800-855-859-2971. I just got my card
Caroline- Can you update the status of affordable epi pens for NV? I have an employee who needs one, but has no insurance. If possible, can you also reply to jhenderson@integritystaffing.com?
Hi Judie, I don’t have any specific data that I know of regarding NV insurance, but http://www.needymeds.org is a GREAT resource. Click on First time users!
We’ve come a LONG way since this thread was started in 2012. http://www.needmymeds.org is very inclusive -for those who don’t qualify for Medicaid (most children will receive coverage regardless of parents’ income level), the site offers many options to reduce the cost of meds. The Affordable Care Act is working & this site is just one small example. While the process for obtaining free/low cost meds may be daunting, it is worth the effort.
I have a serious allergy to bee stings, but also a lot of experience with bee behavior as a former bee keeper. I’ve not had a epi pen for several years..stupid, but I felt safe enough relying on my experience. However, this year our new yard plantings attract a lot of bees, as intended. I needed an epi pen and yesterday discovered that I can’t buy just one! That is absurd. It is unlikely I will use it at all. I don’t care if I can get a coupon to help with expenses in the future. The waste alone is appalling! I doubt I will refill this thing and just take the risk again.
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