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Severe Asthma and the New NUCALA Drug

I've had a bad month with my asthma; it has apparently moved from moderate persistent  to severe eosiniphilic, and everything I've been throwing at it has barely kept my peak flows out of the red zone, including high-dose prednisone.

Now, my allergist wants me to try this new drug, Nucala, which is developed to fight eosinophilic severe asthma. It's a once-per-month injection. 

Here's the rub: Glaxo is charging almost $3000 per month for the shot, and insurance companies, of course, are fighting having to pay for it. I can get it paid for on the short-term, but the possibility of long-term financial assistance is not completely clear. I'm really afraid that I am going to become a profit center for Glaxo while this severely impacts my financial life going forward. 

Is anyone else out there dealing with this issue? Let's chat. At this point, I haven't had my first treatment (that happens in a couple of days), so I'm not even sure this drug will help me. Anyone have experience with Nucala? 

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  • Kathy P

    Hi Brian. Sorry to hear your asthma has gotten so much worse. There are a few members who are taking biologics (what that new class of drugs is referred to). I know some have tried Nucala and Xolair. 

    Cost is a big issue and getting it covered by insurance. I'm on my phone and cant grab you links, but you can do a search for other discussions. If you are on desktop, there is a little magnifying glass near your user name. On mobile, it's in the menu – the 3 bars in the top left. Just put in "Xolair Nucala" and it will find where those are each mentioned. 
  • Brian Cushing

    Thanks, Kathy. I did a quick look through the forums and didn't see any addressing Nucala, so I thought I'd start one. This might be a life-changer for me if I have to take it (in both positive but certainly negative ways as well) so I wanted to get a handle on whether or not it really helps people before I 'sell my soul' to Glaxo. My current allergist says he can get my insurance to pay for it, but I'm going on Medicare in a few months and I'm also trying to move across country to be closer to my daughter, so the timing here couldn't be worse. My allergist tells me it might take up to four months to learn if the Nucala is really going to help me. 

    I know that several drug and health watchdog groups are actively chastising Glaxo for placing such a high price tag on the drug. Glaxo's response is that because it only applies to a 'niche' group of asthmatics, the high price is necessary to recoup costs and make the FDA approval process they went through worthwhile for them. I guess that's a good argument, but I wonder how much they're charging in the UK or Canada for the same drug?? 

  • Pljohns

    I hear you-my new pulmo is intent that he will try to get me on Nacala-it is for the exact issue I have BUT there is no way I can afford it and i"m not too sure about biologic's yet.  For right now, I'm the one stalling until I'm sure we have no other avenues to explore.

  • Jen

    Brian – Those are definitely valid concerns and I'm glad you're looking into things ahead of time.  Here is a thread about  that @Dolphin48 started.  She might have some input on the insurance situation.

  • Dolphin48

    Hi Brian, my allergist tried to get insurance approval for Me to try Nucala. I was denied twice and was told I could file an appeal for a external review. My allergist asked me to consider trying or insurance approval of Xolair. I was approved for Xolair every 2 weeks (2 injections= 300mg ) and just had my 3 set of shots of Thursday. I'm feeling a little better but also just recovered from pneumonia diagnosed 5/11/17.

  • Dolphin48

    My insurance pays $1,000 per Xolair injection. So $2,000 every two weeks. I'm still shocked at the cost of these biologics. I have a $150.00 copay for every 12 week supply. Total cost $12,076.00. The copay is reduced to $5.00 thanks to the Xolair copay assistance card. My allergist charges $110.00 to give me the injections every 2 weeks. I had heard many Doctors, Hospitals charged much more than that.

  • Brian Cushing

    Thanks for the information. I think Nucala might be a bit less expensive, but I'm not sure. Also, it's only a once-per-month shot so it's somewhat less 'poking' and hassle. But it's still pretty expensive. 

    I'm going on Medicare in September, and I've been researching the possibility that Medicare will pay for the Nucala. My research seems to show that Medicare Part B will pay at least most of the cost as long as certain conditions are met:

    • At least two ER visits in the past year for serious flares;
    • Two or more courses of oral steroids in the past year;
    • Blood eosinophils > 150 within the past six weeks;
    • FEV1 < 80% predicted 
    • Drug administered by a professional (not self-administered)

    I'm trying to figure out if the Part B deductible can be covered by Medicare Advantage plan or if I have to buy an expensive supplement plan in order to get it covered. 

    Of course, this is all academic if it doesn't help me. I'm supposed to get the first shot in a couple of days. 

    Anyone out there have experience dealing with Medicare on this issue? 

     

     

     

     

  • K8sMom2002

    Brian, that's interesting about Medicare's criteria. Would you meet those criteria now? 

    Dolphin, I'm glad that you've found an alternative that works!

  • Brian Cushing

    Well, there is one criterion that has to be met for Medicare Part B to pay for at least 80 percent of the drug. A patient has to have a blood eosinophils level of at least 150 cells per microliter within six weeks of starting treatment. My allergist tells me that, due to the high doses of prednisone I've had to take for the last month, he doubts that my level is that high, because prednisone so suppresses the immune system. 

    But he scheduled the blood test anyway; I'm waiting for the results. I told him I refuse to 'get on the Glaxo bankruptcy bandwagon' which is what will happen to me if I fail to qualify for Medicare coverage.

    I'm convinced that doctors only see the PATH to care; they don't necessarily understand or care about the PORTAL, though – insurance companies!! 

  • Shea

    I have medicare (a Humana medicare plan) and am on Nucala. My doctor got it approved, (as far as i know, with bloodwork and my prednisone and history of nothing else working) and my insurance covers a huge portion, but even the out of pocket is huge monthly. I am on disability, and cannot afford the oop so I found a private organization called the PAN foundation. It has a very quick and simple application process online. They are covering all out of pocket expenses for the Nucala for me. I was approved for a year initially with PAN, although they will probably renew the following year, it just goes year by year. The Nucala is the only medication that has been able to get my eosinophils down, after 3 months of injections they were at a  normal level. I am finally breathing well enough that now, 6 months after starting, I was just given the OK by my immunologist to start a slow taper from my maintenence dose 20mg of prednisone… hoping to get down to 5 mg by the end of the year (but I am lowering 1mg at a time). I definitely say its worth any fight for you to start it.

     

  • Shea

    If you can OK it with your doctor to try a taper on the prednisone, then if your asthma starts to flare, THEN get the blood test done at that point. Then go get your steroid shot and get back to your maintenence dose. Then you should have more eosinophils in your blood. That should show the companies what would happen if you taper off prednisone, and they shouldnt want you on prednisone forever because its side effects become pretty large and expensive themselves. 

  • Brian Cushing

    Thanks for your advice, Shea. The plan you mentioned is basically what we're going to follow. I asked my doc to work with me to get to that 150 blood eosinophil number, even if it means a little discomfort on my part to do so. The problem is that once I'm on the drug the number will be impossible to reach. 

    Did you meet this threshold number before you started taking it? And do you have a Medicare Advantage Plan? If so, would they not help pick up some of the 20 percent that Medicare doesn't pay under Part B? 

  • K8sMom2002

    Brian, Shea has an excellent suggestion! I would reach out to organizations like PAN and see if perhaps you are eligible for some assistance in either deductibles or premiums.

    Here are . This link will need to be updated after the end of this month, so it may not work after the end of May, but I'll try to remember to come back and update it.

  • Shea

    I have Humana Gold Plus HMO, a medicare health plan with prescription drug coverage. I did meet the eosinophil threshold before I started taking it, (I had lots of flares from trying to get off prednisone and I used to try to "suffer through" my flares hoping I would get over the hump, but would always end up going back for more prednisone all flared up.. I dont do that anymore), but even on prednisone my eosinophils were high)… I actually have chronic allergic disease called Churg-Strauss Syndrome and eosinophyllic asthma is one component of the disease, it also affects orher vital organs including my heart, so I was approved for disability after a heart attack and applying for disability getting legal help after not being able to work, and that is how I got medicare. So on an explanation of benefits form from PAN foundation (a public charity for medicare only) it says (per injection per month) the medication is $6,600.00, the discount amt is $2,862, other plan pymt $2,990.40, plan benefit $747, patient responsibility 0.00. 

  • Brian Cushing

    Thanks, Shea. Wow! That's nice! I will check this out. Did you need to have the threshold number (150 cells/microliter) to qualify for the PAN foundation as well?

  • K8sMom2002

    Brian, fingers crossed that you can get some assistance! That would be super!

    isn't Shea awesome?! We have a band of very active members like her — folks like @GigiGibson, @Mandy, @Nemo88, @Gloria, @Pljohns and newcomer @Payton's Mom – just to name a few — who go above and beyond … … I love the way they (and you!) inspire me to pay it forward!

    The thing I love about this community is how the members all pitch in and help one another. (BTW, you fall into that category — quite a few of your comments have really given me some great tips!)

  • Shea

    The PAN foundation only required income paperwork as far as I recall, and a diagnosis of asthma — I guess they figure if medicare approves it you really need it) and then they communicated with the site I get the injection at (because of billing purposes with medicare, I could not get the medication/injection in my doctors office, I had to find an oncology center to administer the injection with my doctors orders/referral, which works out well because it is closer to me anyways.)

  • Jen

    @Brian Cushing Have you found out any more about whether or not you might be able to get Medicare to cover the cost of Nucala?

  • K8sMom2002

    Hi, @Brian Cushing … checking to see if you got any more information on whether your insurance would cover the Nucala, or whether @Shea's suggestion would work. Thinking about you as you go through the anti-fungal treatment!

  • Brian Cushing

    Sorry for all the silence. I was diagnosed with Allergic Bronchopulmonary Aspergillosis, which triggered the worst asthma flareup I've ever had. I spent 12 days in the hospital in intensive care on high dose IV solumedrol,  antibiotics, and antifungals; lost about 40 percent of my lung function. I've been recovering at home for the past two weeks. I have tapered the prednisone down to 10 mgs and am on low-level supplementary oxygen now. I'm feeling much better; my lung function has improved enormously. But I've had little time or energy to think about how to get the Nucala paid for, but I'm sure that my pulmonologist is going to be pushing the drug when I see her next week. 

  • Kathy P

    Wow Brian! Sounds like things got really severe. I'm glad your are doing better and out of the hospital. Is the loss of lung function reversible? Hugs. 

  • K8sMom2002

    You've had a tough time of it! If your doctor still thinks it's right for you, then I hope that your doctor and some of the suggestions listed above can help you afford this new med!

    Are you still taking anti-fungal medications?

  • RS

    This thread has been very helpful. I was not aware that PAN Foundation helped those on Medicare. My pulmonologist has recommended I go on Nucala (eosinophils of 736), but my doctor says Medicare will only approve if I am given the injections at an infusion center (no explanation as to why). We have been unable to find an infusion in the Chicago metropolitan area that will give Nucala! Has anyone had this issue? Does anyone know of an infusion center that gives Nucala? My asthma is getting bad and I am getting desperate, as I cannot afford to cover the full costs of monthly Nucala injections.

  • Brian Cushing

    Well, you do meet the blood eosinophils level of >150 so you're good to go there. Medicare will only pay for this under part B. Is it your advantage plan or supplemental insurance provider who is insisting you go to some special place to get the shot? 

  • RS

    Medicare won't answer my questions directly. My doctor tells me it's Medicare that's insisting on using infusion centers for the Nucala shots.

  • RS

    He says no and suggested I try to get into a clinical trial, but I don't want to take the chance that I'll get a placebo. My allergist's nurse has been calling around and so far, infusion centers say they are not set up to inject Nucala (don't know why). I called Gateway to Nucala at Glaxo, to ask for a list of infusion centers in the Chicago area that inject Nucala, and they said "That's not our job." The nurse asked her Glaxo reps for assistance, but after a week, they haven't come up with any infusion centers. I'm out of ideas.

  • Brian Cushing

    Well, it's.probably the cost. They might be afraid they'll get stuck with it. Sounds like everyone involved needs to be educated in this thing!

  • RS

    The allergist's nurse mentioned that as a possibility too. But they will confirm my Medicare coverage before treating me, so they will know they will be reimbursed. Anyway, thanks for the conversation.

     

  • RS

    Thanks for the link. I'll start calling them. However, under types of insurance, it doesn't event list Medicare as an option.

  • Jen

    @RS Welcome to AAFA's support forums.  I hope that your doctor is able to help you find a way to afford the Nucala injections.  @Shea may have some ideas for you as well.  Have you reached out to the company that manufactures Nucala to see if they have any patient assistance programs?

  • RS

    The doctor has been trying to find an infusion center that will inject Nucala for me (and two other of his patients) since April 25. When I called Glaxo's Pathway to Nucala program and ask for a list of Chicago area infusion centers that inject Nucala, they said, "That's not our job." My allergist's nurse asked her Glaxo reps to help us, but they haven't come up with anything.

  • Jen

    That is frustrating.  I wonder if the allergist's nurse has some other contacts – maybe even other allergy practices that might have some experience with this.

  • Shea

    I was recommended to cancer infusion centers, and that is where I currently go for my nucala  injection. I had to call my insurance and get a few names of cancer infusion centers, then call and ask if they could do nucala.

  • RS

    Thank you. Neither Medicare nor Glaxo (makes Nucala), would give me any infusion centers to contact, so I am researching them and calling them myself.

  • Shea

    That is a pain. Medicare should at least give you names of cancer infusion centers that take Medicare… I have humana medicare managed plan HMO, and they at least gave me that. But there are usually a lot of cancer infusion centers out there, so I am sure you will find one. Then you have to go for an initial consult with their doctor, and then get the pan foundation stuff to their billing department, and get the dates set up for monthly infusions. And then its done!!! Good luck, let us know how it goes!

  • RS

    Thanks, my allerrgist's nurse and I have been calling infusion centers, but so far none will administer Nucala. She thinks it's because of the high cost.

  • K8sMom2002

    @RS, have you and your allergist's nurse found anything? How have you been finding the centers to call? This sounds all very frustrating — here's hoping you will catch a break soon.

  • K8sMom2002

    @RS, a friend of mine in the Chicago area suggested that perhaps the Kellogg Cancer Center Care (part of NorthShore University Health System) might be worth checking into. She also mentioned that many dialysis infusion centers take Medicare. Have you or your nurse considered reaching out to a dialysis infusion center?

  • RS

    Thanks for the responses. The problem is that Medicare sets the price infusion centers can charge for medications. In the case of Nucala, the purchase price is so high, and the Medicare set price is so low, that no infusion centers want to take the hit to their bottom line. None of the hospitals where my doctor is on staff will do it. He has contacted his Nucala rep for help, but she has come up empty.

     

  • Shea

    I do not understand that. But… I do not understand a lot of things like that… I think… it is really easy to inject a medication. and that us all you are asking them to do.. not buy it! Ntm that the PAN Foundation is paying a huge amount, and medicare the other.. the infusion center is not paying for any of MY medication… so I think they have it wrong. All you are asking them to do is inject a medication and get paid for doing that, of which medicare and the PAN foundation pay them to do. 

  • Brian Cushing

    I think I understand. In order for the drug to be paid for under Medicare Part B, it has to be injected in a medical facility. Medicare in this case is insisting for some reason that the only 'medical facility' qualified to inject the drug is an 'infusion center,' which indicates to me that they have this drug classified all wrong. It is not an 'infusion'; it's a simple once-a-month shot. The infusion center administrations, I'm sure, are looking at this requirement as completely ridiculous, and they don't want to get stuck having to pay Glaxo the difference between what Medicare's 'negotiated' price would be for the drug and whatever Glaxo will charge them for it.

    It amazes me that Glaxo refuses to do anything to end the confusion and mis-classification, especially since it's often older asthmatics who are more likely to have had their asthma progress to the severe persistent stage and would need the drug in the first place, and many of these older asthmatics would be on Medicare. I think they don't care whether they bankrupt people or not. 

    I wish we could get a boycott going for this company. Advair, Flovent, Serevent, Breo, and Ventolin are all Glaxo products; I think we should all ask our doctors for alternatives for these medications. 

  • K8sMom2002

    @RS, it sounds like a definite catch-22. How extremely frustrating! @Shea's suggestion about the may help with the purchase price … were you able to reach out to them?

    If the infusion center doesn't have to bill for the Nucala itself, would that help the situation?

    I am hoping that SOMETHING will break loose and you will be able to get the medication that you need.

  • Shea

    I feel lucky I did not have to go through the difficulty you are experiencing, it definitely sounds like something is askew in the system, like Brian said. I remember them saying it had to be a place that buys, injects, and bills for the medication (an not like my immunologists office because they used a specialty pharmacy to buy/bill). I did not consider the reasoning behind that… I thought it was because it was easier for them to deal with just one entity. The other way (what I had to do under a different insurance for xolair injections) required me to verbally agree to have the specialty pharmacy send the immunologist the med each time, and seemed more complex– I am pretty sure my injection center is not paying any cost for the nucala medication though,  because I have no evidence of that and do not think they could afford it, and I have been getting injections for months now. I hope something gives like K8Smom said! 

  • K8sMom2002

    Shea, Brian and RS, I'm just grateful that you guys brought this to my attention — it helps me to know what can be a problem for people. 

    Big hugs — access to medication is a huge deal, and RS, I am hoping you'll be able to report some good news soon. Kudos to your nurse for diligently calling infusion centers on your behalf!

  • RS

    I want to sincerely thank everyone who is responding on this thread. Your comments are helpful and supportive. Brian, you completely nailed it; that is exactly the situation.

    My husband and I met with my allergist on Monday, who said he would call his Nucala rep and get back to us. He called us back and said the Nucala rep promised to look into the problem and get back to us the next day (Tuesday). As of today, no word.

    As an aside, I have fallen behind in my allergy shots, because I have not been able to pass the lung function test for the last three weeks.

    Thanks to so many of you who mentioned the PAN Foundation, I had looked into it, but incorrectly thought I read they would not help those on Medicare. I now see that they do, but they limit support to $1,400 annually. Nucala is $3,750 per shot (shots are every 4 weeks and this does not include the additional charges for administering the shots). That's $48,750 annually. I'm also not sure how it would work, since the infusion center cannot bill me more than the Medicare approved amount, I guess I would have to buy the Nucala myself (if the infusion center would allow that) and then request reimbursement from Medicare and PAN. I will call them to inquire.

    Shea, I would like to hear more from you, as you seem to have gotten the system to get Medicare and PAN to work for you on Nucala.

     

     

  • K8sMom2002

    RS, it is absolutely our pleasure! 

    Have you called PAN to see if they have some suggestions? Sometimes even if a person doesn't have an answer, they may know someone else to call. 

    And your husband and your allergist sound like they have your back. I'm hoping something will come of all this. Sending the very best of good and prayers and positive thoughts.

  • Shea

    So, It could have changed since I applied but, PAN Approved me for $6000 for a year. And said I can reapply again after that year is up.

    So, medicare gets to pay for the medication at whatever their negotiated rate is, I cannot remember.

    Then a certain percentage I would normally have to cover (I have Humana Good medicare managed plan), BUT PAN pays that out of pocket. So I haven't had to pay anything besides a small amount to the injection center.

    On top of that, I think that what PAN's charity pays goes toward my max out of pocket costs, so that by the time their funds run out, I will have met my max oop costs required for my insurance, and then medicare will cover it all after I reach that. (Do not quote me on that last part, I haven't gotten that far yet.) I know I had an earlier post on this thread with the cost breakdown, I can't find my info right now.  

    My eosiniophils have gotten to between 0 and 1% since starting like 6 months ago -ish. ( Previously nothing made it that low besides giant amounts of steroids.) And I have started to lower on my prednisone recently (very slowly in hopes of avoiding relapse), and am at 18mgs (down from 20mgs–I was stuck at 20mg for years). My disease is called Churg-Strauss Syndrome, but allergic asthma is a key component of it, and controlling eosinophilia is paramount go preventing damage to all my organs. But it was my asthma diagnosis that qualified me for PAN. I have no idea if they changed the max amount since I applied, but definitely worth double-checking that before you give up on them.