Jill Negro

About Jill Negro

Jill Negro is a Wallingford, Connecticut stay-at-home mom of two, writer and adjunct professor.

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October 7 2016

Seven Reasons Why the Epipen Crisis is Grimmer than You Know

Jill Negro Food Allergies, Food Financials 0

Guest article written for RobynObrien.com by Jill Negro.

By now, you may get a little sick to your stomach hearing about Mylan’s wrongdoings. Well, it is even worse than most media is likely aware of, and has reported. I am a mom of two boys who require Epipens for nut and egg allergies. They need, at bare minimum, one for home and one for school, each. We spend thousands of dollars on Epipens each year. Yes, this is with insurance. Yes, this is with Mylan’s “free Epipen” coupon. Yes, this is including the new “$300” coupon. Yes, our insurance does cover them—but, subject to our $5,200 deductible. Yes, this is typical of most families with food and other allergies.

I also happen to have a background in health insurance and am, unfortunately, intimately familiar with Epipen price gouging and its impact on the many families like mine. It is ironic that I am Mylan’s target market. And I am also the mom crying at the pharmacy because we can’t afford our children’s prescriptions.

Now that we got that out of the way, here are a few important facts you’ve likely not have read or known:

1. The patient assistance program does not apply to most patients. Mylan’s initial response to this crisis, and make no mistake, it is, indeed, a crisis, despite what Mylan would like you to believe, was to increase the patient assistance program income eligibility limit. I had a glimmer of hope. Until I read the fine print: “The patient must not have prescription insurance coverage through Medicaid, Medicare Part D, TriCare, a qualified health plan purchased on a state-based, partnership, or federally-facilitated Exchange, or any other public or private program or insurer. Verification documents will be required.”

Did you catch that? Mylan is touting the patient assistance program as an answer to the problem of patients and parents with high deductible health plans who can’t afford Epipens for themselves or their children—yet, people with any health insurance, high deductible or otherwise, are not eligible. Since the uninsured population is quite small these days, this “assistance” actually applies to very few (if any).

2. The new, $300 coupon, available for “certain people” expires in less than three months. Mylan has not said whether the coupon will be available beyond the December 31, 2016 expiration date or not. Are they simply hoping the bad press blows over by then? My own family won’t even be able to actually use the coupon because we need to refill our script in January, in order to get the longest time with our Epipens before having to shell out thousands more again next January.

3. The $608 wholesale acquisition cost you see in the media is actually hundreds less than what most patients are paying. Customers pay retail, not wholesale. According to many upset moms across the country I’ve heard from, the costs are now much closer to $800 and up. The Mylan CEO said very little to clarify this, other than indicating in a prepared statement that a “minority” of customers may have paid wholesale acquisition cost, or more. She did, arguably purposefully, not distinguish just how much more that cost really is.

When I last called our local pharmacy, they quoted $743 per box. In order to make sure we have coverage for both of my young kids at home, preschool, and activities we need four boxes, at absolute minimum, and realistically six, if we want to be sure there is one available at all times wherever they are. Next year, when my older son starts elementary school, I’m told that if he wants to play any sports another, separate Epipen is a requirement. If you’re counting, that’s $4,458 for the six boxes we need to keep my kids safe. This is a yearly expense.

Even if Mylan extends the $300 coupon beyond December, it still only brings us back to what we last paid in June, nearly $500 a box. And it is still thousands more than what my family, and most families, can afford.

4. When the $300 “generic” Epipen comes out, no one knows how, or if, it’ll be covered by insurance. Also, for the majority of families who need multiple Epipens for multiple children, this is still thousands of dollars. In addition, it is an extremely high price for a “generic,” off-patent drug. By all accounts, we are talking about a very old, dirt cheap medication housed in a device created by government funded dollars 40 years ago.

Mylan continues to cite “increased awareness” as a reason for their astronomical increases: But is it awareness or advertising? I certainly did not need to be made “aware” that my 11 month old broke out in hives at a restaurant, or that my nephew had trouble breathing after a mild exposure to peanut residue. Our allergist was prescribing Epipens long before Mylan acquired the drug from Merck. They cite increased Epipen prescriptions as proof of this “awareness” without noting that the prevalence of food allergies in children has also been increasing to now 1 out of 4. This is a statistic that Mylan is capitalizing on.

Bresch also loves to talk about the “free Epipens for schools” program, although it does nothing for families who have children with documented allergies who are required to have their own, current prescription, in their own names, in order to even be able to attend school. As Senator Blumenthal indicated in his press conference, you can’t require schools and parents to purchase Epipens and then price gouge them on it. He correctly noted that Mylan is taking advantage of the 2013 law that they lobbied for. While I am certainly happy that schools must stock emergency Epipens, and that they must provide staff training, subsequently increasing the Epipen cost beyond what my family can afford is forcing us to choose between our children’s most basic needs and their Epipens. What would you choose?

Additionally, the “enhancements” to the device mechanism, basically that the needle is covered after injection, has turned out to likely be a minimal investment, according to experts.

Mylan also states they’ve had costs from researching how to extend the shelf life. And lo and behold, they’ve been successful in doing so…but why did it take a congressional hearing for anyone to even hear about this breakthrough?

5. The shelf life for the actual patient is 4- 6 months less than what Heather Bresch admitted, under oath. In the congressional hearing, Bresch stated that the shelf life is 18 months. What she neglected to clarify is that by the time patients pick up an Epipen from the pharmacy, there are usually only 12 of those 18 months left, sometimes less. I’ve never gotten more than 13 months out of our Epipens, and I always ask for the latest expiration available. I feel Mylan intentionally misled congress by saying 18 months and not disclosing the lag time between when the Epipen is manufactured, and when we can pick it up, leaving us one year. In fact, I have a friend who recently only had 6 months before having to buy new Epipens for her 2 year old son.

6. This direr crisis applies to the majority of people with life-threatening allergies. A huge point of frustration for many moms in food allergy networks across the country is Mylan’s insistence that “most” people get Epipens for $100 or less, or even free. In fact, Mylan likes to estimate 85% of consumers, yet no one knows where this number is coming from, or how it could possibly be true. It is certainly not true for the vast majority of my friends’ families, nor the majority of moms I’ve spoken to who are crying out for help. It also does not take into account the many people who leave their Epipens at the pharmacy because they can’t afford them. I alone have three friends who have sadly done just that. They are taking a gamble on their lives. All three are moms.

Importantly, there are also most likely many people who simply wait to fill Epipens until they’ve met their $5,000, or $6,000, or $10,000 deductible. I’ve done this myself. Why? Because we can make payments to our doctors and hospitals. Epipens require thousands of dollars of cash, up front. Why is this important? Because many of us are keeping expired prescriptions at home until we meet those deductibles, or until we can afford to buy more. And again, this puts our children’s lives at risk. The situation is much grimmer than Mylan would like you to believe: My friends and I are risking both our and our kids’ lives—because we simply have no choice!

Further, even if your Epipens are well-covered by your insurance plan that cost is most definitely coming back to you, whether you realize it or not, or whether Mylan admits it or not.

7. Bresch testified, falsely, under oath that the increased cost to insurance plans for people who are lucky enough to pay only a copay for their Epipens would not subsequently come back to consumers with an associated increase in health insurance premiums. That is exactly how insurance works: Healthcare costs go up, premiums and rates go up—or cost sharing, i.e. deductibles and coinsurance and copays, go up. While I do have 10 years of experience in health insurance, this is not exactly an industry secret, but common knowledge, which also happens to be frequently reported on. Did Bresch really not know this as CEO of a major drug corporation?

Let’s give the benefit of the doubt and simply think about it for a minute. What happens if you’re in a car accident? Multiple car accidents each year? Do your car insurance premiums go up or down? Do people purposely avoid putting in car insurance claims to avoid an increase in their insurance costs? Why, yes, they do. Having multiple children with food allergies who require multiple Epipens per year is like having 4-6 accidents per year, every year, year after year…most likely for the rest of their lives. Except what just five years ago was the equivalent of a fender bender, is now like being rolled over five or six times per year by a Mack truck, through no fault or choice of one’s own.

To be fair, while having one, or even a few, increased costs won’t necessarily cause a sole individual’s premium to go up, higher claim costs DO cause increases in premiums; it’s just that it’s not only for you, but everyone covered under the plan–most especially since these are predictable, yearly expenses. Does that make price gouging better? No. It simply means we are ALL paying. And some of us twice because we are also taxpayers paying for services such as Medicare, Children’s Health Insurance Programs (CHIP), and Medicaid. How do you like them apples? Are you outraged, yet? Because if you’re not, you should be.

Offering a $300 “generic” for some, while forcing others—insurers and the government—to pay $700-800, absolutely causes premiums and rates, and/or copays and deductibles, to go up for EVERYONE. The insurer will not simply absorb that cost increase out of the kindness of their hearts. After all, they’re indebted to their shareholders, too. And do you suppose that any company in America can, and would, and even should, absorb the skyrocketing cost from blatant price gouging? Would you be happy to know that if not passed onto you, it must come from somewhere else? Perhaps your bonus? Perhaps your salary? Perhaps your job? Or would you like to instead sacrifice your child’s life?

What options do we have? I was recently invited to share my family’s story on Dr. Oz, and he talked about one alternative: generic Andrenaclick. As you can see, GoodRx coupons for Walmart are, hallelujah, currently about $144 per box. However, this appears to be without insurance. If I’m paying about $700 out of pocket, I would want it to be applied to our deductible so that it is not an added cost on top of the $5,200 we pay out of pocket, but it’s still clearly a huge relief and improvement over paying $4,000 or more all at once. And while it’s unclear at this point if the generic Adrenaclick is an option for our family, since I need to talk to our doctor, you better believe I don’t want to give Mylan any more of our money.

August 26 2016

Mylan’s EpiPen Olive Branch: Not Even Close to Enough

Jill Negro Food Allergies, Health 0

When we read Jill Negro’s article and learned that she was concerned about Mylan’s new “peace offering” to Americans outraged over the skyrocketing price of EpiPens (or “olive branch” as she calls it), we felt it was important to share her words. Please meet Jill, adjunct professor and mom of two.

I read in an article yesterday that Heather Bresch, CEO of Mylan, has called the EpiPen her “baby.” As a food allergy mom, the fact that she does so as CEO of a company that has the potential to save, and yet put the lives of my actual real life babies at risk, is ironic, to say the least.

It was then announced on HLN News that Mylan is planning on giving an additional coupon worth $300 to “certain people.” Further detail was reported on CNBC. I have to say that reading about the relief is, well, a relief. However, it will only help us if this coupon is per twin pack, rather than per prescription, and if it is available every year for the life of my two boys.

My question to Mylan is, what would you like my family to sacrifice next so that you may keep up with your $1.3 billion annual profits?

Also, who are the “certain people?” And importantly, it will also only help if the price does not continue its trajectory of 15-20 percent increases every quarter, every year, year after year. Mylan has additionally promised to double the eligibility for patient assistance. I would ask that Bresch please consider that while $97,900 for a family of four is a lot of money in many parts of the country, here in Connecticut, where the cost of living is among the highest in the world, it still may be a struggle for families, particularly those like myself with multiple school age children who need EpiPens, in a multitude of places—at camp, at school, for sports, and home.

The coupon also does not appear to account for the fact that fully insured plans will pick up the full tab without subsidy, resulting in higher premiums for those lucky enough to have the pens still covered by insurance, and that taxpayers are on the hook for families who get them through Husky in Connecticut and Medicaid.

I do not believe a temporary coupon, while it does potentially appease the masses in terms of the media uproar, and provides potential temporary relief for my family, is not an effective solution to a long-term problem. Instead, it is further adding to the expense of companies who pay their own claims, if they are self-funded (likely affecting workers’ wages), or the government, (and therefore, us, as taxpayers), or insurance companies—thus, bringing the cost right back to consumers with food allergies in the form of higher premiums—and reduced wages. By the law of economics, in a country of public health companies beholden to their shareholders as opposed to the people actually using the products or services, increasing healthcare costs ultimately always come back to taxpayers and consumers.

We all know food allergies are rising at an alarming rate, and Mylan has continued to increase EpiPen prices each quarter, year after year. When will it end? Clearly, this is a growing problem. Bresch is placing 99 percent of the blame on healthcare insurance, which is not accurate or fair. She has repeatedly said that deductibles have gone up “overnight.” Not true. Our family deductible has been $5,000-6,000 since 2011, and actually has gone down to $5,200 with my husband’s latest job change. I have personally had a high deductible plan since 2005. I would hardly call a span of 11 years “overnight.”

Having worked in the insurance industry for several years prior, I can say with absolute authority that there has been a push toward consumer driven healthcare — shifting more of the cost to consumers — for years. President Bush passed Health Savings Accounts (HSAs) into law in 2003. We cannot blame this on Obamacare, or high deductible plans, or anything other than greed, quite frankly. Because whether I pay the bill or insurance pays the bill or Medicaid pays the bill, the money is coming from somewhere. Mylan cannot simply charge whatever they would like and say “it’s OK, insurance/Husky/Medicaid/schools/EMTs are picking up the tab.”

Conversely, insurance companies, most of which are public, are also bound to their shareholders, and thus cannot have these prices interfere with rising profits. Do you see the problem? Again, whether it comes out of my pocketbook or not we are ALL paying for it.

Also, if this is really the hardship on Mylan as Bresch is now claiming, why has her salary risen to $18 million, annually, in the same period of time that the EpiPen price has skyrocketed? Or why has Mylan’s profit, 40 percent of which is based on EpiPens, risen to $1.3 billion, also annually, and also within the same time period?

She said part of the cost is enhancements. What enhancements have there been? She said the cost is partly due to spreading awareness and by giving free EpiPens to schools. But is that cost being billed back to my family? It seems, indeed, it is. So while Mylan gets the glory of “free EpiPen” publicity, we are the ones footing the bill. She says there are four to five touch points of middlemen who need to make money, but hasn’t spelled out who exactly these middlemen are.

I could hardly believe when I got the call Monday from Washington D.C. asking if Sen. Richard Blumenthal could reference my story in a letter to Mylan. Equally so when the call came later asking me to speak at a press conference. How could I say no? It’s not that I couldn’t believe they wanted to talk to me, it was intense relief that I was finally being heard.

While EpiPen price gouging has been in the press the past week or so, it is not a new issue to my family. See, I have two little boys. Bradley is 4 and Jeremy is 2. Bradley and Jeremy both have food allergies, diagnosed after reactions at only 11 months old and 13 months old, respectively. They both have had multiple reactions.

Because we have a high deductible health plan we pay thousands for Epipens each year. But the financial burden of continuing to do so is becoming unbearable for our family. We’ve paid $2,000 this year alone, with the bare minimum two twin packs for each child—one at home and one at school. The price of our last refill in June this year was $599 per twin pack.

Bradley and Jeremy Negro. Both boys need an EpiPen.

I called the exact same pharmacy, our town CVS, on Tuesday to try to budget for our cost once these expire in less than a year. I was quoted $734.94, per twin pack. Remember, we need two for each child, minimum. According to CVS, the cost would be $2,939 or $2,839 with the “$0” coupon Mylan promotes as making the pens virtually free for all.

This for a device that, by all accounts, costs approximately $1 to manufacture, and was only $57 to purchase only a short time ago when Mylan bought the generic division from Merck.

It gets worse. I also learned once my boys start school, they will require a separate twin pack for any sports or activities. And even a separate twin pack for before- and after-school care. This brings our cost, at bare minimum, to $5,000 or more per year. And this is assuming we don’t actually use any of the Epipens. And, again, that Mylan does not continue their trend of up to 20 percent quarterly increases.

In fact, I was quite upset when I read Mylan’s comment that “most” consumers pay $0 for their pens, due to this awesome coupon—which has a $100 maximum value. This does very, very little to help my family, nor many of my friends’ families, nor the millions of families with high deductible plans.

The latest statistics show that 52 percent of employee-based health plans have high deductibles, and 90 percent of individual plans, including those in the American Affordable Care Act exchanges have high deductibles. And while this is by no account new, as Mylan would like us to believe, the trend is rising. The point being that this is not just my family’s story, but countless others. Since I have posted this on my Facebook page on Tuesday, six different people have told me that they have not filled their EpiPens. They will do so for their children (and I suspect that Mylan knows this, and is why it is such an important point that they are taking advantage of that fact), but not for themselves.

I think it is important to reiterate that we have had a high deductible plan for more than 10 years, so this is not a new, but an increasingly unbearable problem. Yet, what are people like me, with two children with life-threatening food allergies and high deductible plans, who are not also independently wealthy, going to do?

I am ashamed to say, like many, many moms have since admitted to me, that I have kept expired EpiPens to use at home. We do not have much of a choice. Last year, we used a significant portion of our savings to pay for them. This year, I will be forced to use some of my retirement money. But the government only allows a one-time rollover from an IRA to an HSA per lifetime for a family. I am using mine now. I have no idea what we will do next year. Or the year after that. Or the year after that…

We are a young family. I am a stay-at-home mom and a part-time teacher. While we are close to Mylan’s patient assistance threshold, as Connecticut residents in a fairly modest home, we make just enough to pay our expenses, with quite little left over, if at all, and months of unexpected expenses, a car repair here, a house repair there, leaves us behind and dipping into limited savings.

My oldest son, Bradley, also has asthma, and my youngest, Jeremy, has an airway defect and aplasia cutis congenita. He’s had three surgeries so far and he is only 2 1/2. My husband also survived an aortic aneurysm recently and has a lifelong medication to keep him alive. I bring this up because our medical expenses will be high regardless. I have come to accept that. What I do not, and will not, accept, however, is arbitrarily raising life-saving drug prices beyond what we and most families can afford.

A mother wants to do everything she can to protect her child. Leaving my 2-year-old and my 4-year-old children vulnerable to life-threatening allergies without a having a device close by that may potentially save their lives is unthinkable. My question to Mylan is, what would you like my family to sacrifice next so that you may keep up with your $1.3 billion annual profits? Do we sacrifice feeding or clothing our children? After all, I suppose if we cannot afford to actually feed our children, we do not have to worry about their food allergies. Or do we potentially sacrifice the lives of our children? That is the choice they are forcing many of us to make.

Arbitrarily raising prices 450-600 percent since purchasing the product is putting the lives of my children at risk because it is what my family, and most families with high deductible health plans can afford. If the people at Mylan read this, I am asking you to do the right thing because the lives of my beautiful little boys are in your hands.

While I appreciate the olive branch of a $300 coupon, will it last? Will it apply to us? Is it enough?

Originally published at CTViewpoints and reposted with permission.