Forums


Treatment

Orencia IV treatment

  • By Connie Rifenburg

    I have been on Orencia for over 2 yrs and 6 months without it. After 12 yrs of RA, we (my RA dr. and me) have found this to be the only treatment that I have not developed an allergy to, or had no help from. Yet, it is so very expensive, that every year, I struggle to find the funding to help with my copayments. For the past 2 yrs, I have had Medicare Advantage w/AARP, and they billed my $2500/mo medication to Medicare Part D, which in 2 months, put me in the “donut hole” and my copayment of $651/mo went to $982/mo until I got out of the donut hole and then it went down to $400+. This yr (2014) I went with Humana Advantage and the medication cost is $1930/mo and my co-pay is $374/mo. I am on disability, but make too much with my early retirement checks to qualify for Medicaid or other state programs, but my income is less than $1700/mo and I can not afford my other meds, rent, groceries, and the rest (no frivolous…believe me). Does anyone have the same problem? I have had to go 2 months now without my infusion because all the foundations are out of funding for Rheum.Arth. and I don’t have an extra $374 for my infusion yet. (I’m saving up). Bristol Myers who makes this drug, has a program to help, but you first must pay 3% of your annual income on medications to qualify for their assistance. That would take me months to do. I am appealing their decision. But this has been a problem every year, and sometimes more than once a year if I run out of funding. I feel desperate and degraded to beg for a drug that makes the difference between 40-60/mg prednisone day, and 6/mg day. It means the difference between whether I can get up out of bed, and walk with a cane, or be bedridden, and killing myself on high doses of steroids and narcotics. Why must the mfg. of miracle drugs make them so unavailable to the needy? I’m talking about the average ‘joe’ … who could afford $2500/mo full price for this drug? Why price it that high?

    Well, thanks for letting me vent here. I don’t know what the answer is, but I’m having to go another month without my Orencia to see if Bristol Myers will consider my appeal for help before I reach 3% spent.

    I’d like to hear from others who might share the same problems. It’s never ending. I will continue to be on this drug until something else can be found. I’ve been thru all the more traditional treatments and became disabled 5 yrs after I was diagnosed at age 50. So will I have to continue to beg for help for every month’s treatment? I can’t bear the thought.

    Reply Created with Sketch. reply
  • By Andrew Lumpe, PhD Moderator

    Connie, I’m sorry for the predicament in which you find yourself. And don’t apologize for venting! I’ve heard about this problem for those on disability and it seems like such a travesty…the most vulnerable are not able to access the drugs they need. I’m sorry that I don’t have any expertise in this area. You probably already know the information but here are some sites I found related to this issue.

    http://www.medicareinteractive.org/page2.php?topic=counselor&page=script&slide_id=1310
    http://www.medicarerights.org/pdf/copay_charities.pdf
    http://nclnet.org/health/106-prescription-drugs/768-ways-to-save-on-rx-meds-co-pay-cards-and-other-resources

    Reply Created with Sketch. reply
  • By Connie Rifenburg

    Andrew, thank you so much for the links you provided. In fact, I haven’t searched them before so I have a project for today!

    I know that part of my frustration with funding for Orencia is due to the fact that as a single parent all my adult life, I always planned ahead to care for myself in my retirement. I had 2 retirement plans, 401K, and always carried a disability ins. policy on myself at work. I had almost pd off my 15 yr mtg on my small condo, and my car was paid off. All these things by the age of 57 working 2 or more jobs sometimes and raising my son.

    I now understand completely that a disease like RA can not be “planned”. Mine was triggered (we think)by a terrible case of food poisoning for which I was hospitalized for a week. Within 6 mo. I had badly swollen feet and severe pain and after blood work at my dr. my Rf factor was over 500. I had RA. Started treatment immediately, and yet 5 yrs later, I was in what would be a 2/yr flare. Due to that; I was on disability (thank goodness)but was let go from my job of 6 yrs during the national slump of 2008/9.

    Then I was introduced to the reality of all the “plans” I thought would take care of me. Anyone who has a long term disability plan, please ask to read the ENTIRE plan. Mine was thru work and they never sent you the whole plan details…. (fine print). They were to pay me 60% of my income until age 67. I kept my expenses to approx 60% so as to live on that if needed after I found out I had RA.

    But…when I went to use it, they told me I had to use their atty and request disability from S/S or they would not pay me the insurance I had paid for myself for years! I was so sick at the time, that my sister had to make a lot of decisions for me while sitting on the edge of my bed, and repeating the phone calls to me. All I wanted was enough to pay my mtg and utilities, which this would have been…But I didn’t figure in all the medical bills that would accumulate as the RA attacked my heart, lungs, as well as my joints.

    I had allergic reactions to so many meds, hives, throat closings (I now carry an epi-pen) and hospitalization for a deadly reaction to Humira. After all that, I lost my condo to foreclosure, had to file bankruptcy on thousands of medical bills, just so I could keep up with current doctor bills, had to move into an independent living Section 8 housing with many people who were in their 80s and belonged in an ALF.

    Ofcourse I qualified for S/S w/in 4 months, yet had to pay the atty who did nothing. It was basically automatic for RA in my condition. And every year, I have to re-qualify as disabled for my LT disability policy to pay…not 60% of my income, but the difference BETWEEN S/S and 50% (not 60%) because they said it was pre-existing now… I feel the gov’t is being scammed by this since the private policy should take preference over government plans; but they don’t. I called in my 2 retirement plans early at age 57, and so lost over 50% of the value, used my 401K to file the bankruptcy and move to the independent living bldg.

    So much for long term retirement planning. At this time, I live on those things that would have given me a fairly comfortable retirement, yet because I planned ahead, it’s those amts, totaling just over $400/mo, that make the difference between me qualifying for Medicaid and the help with my medications or not.

    I will add that I have also developed Wet and Dry Macular Degeneration and Glaucoma, Fibromyalgia, and sleep apnea due to the large amount of weight from the steroids. So every dr I see is a specialist and I see 3 of them monthly with co-payments of $40/ea. plus 20% of all the tests they run. I get an injection in my R eye every month for the WMD to help keep what sight I have for a little longer. I have had laser surgery in both eyes to place holes to drain the fluid pressure for the glaucoma, yet it has once again flared and I am on eye drops @ $45/mo. I take 16 pills a day.

    I am currently 62 yrs old. Until I turn 66, I can not qualify for the less expensive Medicare supplement programs since they are allowed to turn you down for pre-existing disease until you’re 66. At that time, I could just go on straight Medicare w/a part D medicine supplement and I would qualify for add’l help. It’s a conundrum isn’t it?

    Dealing with a chronic disease is difficult at best, but having to battle for the drugs that make life bearable shouldn’t be added to that mix.There are days I know are good. It’s just right now, they’re not.

    My wonderful son and his wife have planned a trip to a lake home in the blue ridge mountains for June this year and have asked me along with the family. I know in my heart, that they planned this trip for my benefit since my eyesight will probably be so limited by next yr as to not allow me to enjoy the beauty I know I’ll see. I go to the website and look at where we’re going and think of how lucky I am to have such a wonderful family.

    It’s because of those God given good things in my life that I try to face each day as positive as I can. I know there are those who are struggling as much or more than I am, and don’t have the special love of a family. My heart goes out to them too.

    The long and short of this is: I worked hard all my life, never took from the Gov’t to help raise my child, paid taxes on 2-3 jobs, put myself thru school to get the best job I could, yet never earned over $12/hr. I’m not asking for freebies. I just need help now to live a semi-comfortable life for the time I have left. I don’t want to beg and fight bureaucracy on a regular basis just to get a drug that makes my life tolerable.

    If you would like to move this post outside this area, I seem to have gone off topic I’m afraid. It just was one one those mornings I needed to tell my story. Thank you for giving me a place to put those thoughts in order. Among others who have similar stories I’m sure.

    God bless.
    Connie

    Reply Created with Sketch. reply
  • By Andrew Lumpe, PhD Moderator

    Connie, don’t apologize at all for sharing your story. It is heartbreaking and also paints a realistic picture of what can happen even with best laid plans and a life of hard work. There have been many days I’ve considered what would happen to me should I need to claim disability. And the thought has crossed my mind more and more over the past year as treatments failed to work (including Orencia). I’m on my 7th biological now, Rituxan, and it is the first thing that’s really helped me in years. So maybe I can dodge the disability bullet a little longer. I also have a private disability insurance policy through my workplace.

    I appreciate your demeanor and lack of blame placing. But you deserve so much more. May God give you grace and peace as you continue to work through all of these issues.

    Andrew

    Reply Created with Sketch. reply
  • By Connie Rifenburg

    Thank you Andrew for your support of a few days of the downs for me. I usually write in my journal, but lately, it’s becoming more difficult to use a pen to write with, so typing is easier for me as I’ve typed for 50 years…beginning on those old upright manual typewriters with the manual carriage return! I’m sure you don’t remember those except in pictures! haha.

    I’m amazed that you have gone through 7 biologics so far. I had 3 Humira, Enbrel,now Orencia. Isn’t it strange that our bodies, tho suffering from the same disease, do not react to the same treatments. It says much for an immune disease and the difficulty treating it I suppose.

    I’m glad you have found a treatment that seems to be working for you and hope (as you say) that you can dodge the bullet a while longer.

    The fact that you have a disability policy through work made me want to give you some info regarding the policy. First, is it AIG ? You know, the insurance company that Americans bailed out with millions of dollars? If so, that is the one I have and got such poor treatment from. Second, do you have short and long term disability? Here’s something to think on. Altho I didn’t know it at the time, my company did me a favor by letting me go while I was on Short term disability.

    Why? because if they had let me go (never for the real reason of too much time off due to my illness) but just “company reductions”. I would have lost my company paid disability. But because I was on the disability when I was let go, they had to complete my 6 mo. short term and because I was in the midst of what was to become a 2-yr flare, my short term rolled into long term (which I had purchased). Do you have a full policy to look at for your disability insurance? If not, now is the time to request one from the insurance company.

    What I found, after the fact, was that I had paid for 60% of my income, and the company did not ask about pre-existing diseases (and mine was not in a flare at the time)for 5 yrs, I paid on the policy while working. No problem with the short term. Easy as pie, and they paid 60% of my salary. Jump ahead to 6mo and now, they tell me that I don’t earn what I earn. That they use the last 3 months of my income to decide what 60% of my income is. Well, heck, I was on disability…and before that, I was having to take time off without pay as I had run out of sick time. So my income was reduced in the last three months of my work, to significantly less than my full salary.

    Then, after they had tried everything to keep from paying my LT policy, they decided that I had a Pre-existing disease and therefore wasn’t entitled to 60%, but only 50% of my income, even tho they had accepted 5 yrs of add’l payments to raise it from 50 to 60%. Then, as I told earlier, they MADE me apply for S/S disability. Why? I will never understand, but they said… look at your policy. I had never received a full blown policy from my company.

    As the story went, you know that RA is an “automatic” S/S disability disease, just recently added along with Lupus. Which means, that with medical documentation, you can count on getting the disability… especially if you are 50 yrs or older. 4 months later, without any questions, I had $5K deposited in my bank account (4 months back pay). I cried thinking this was how I could catch up with everything. No.

    Not true, AIG said. It was infact, double payments because AIG had been paying me 50% of my income for 4 months, so I had to “pay them back” PLUS pay their attorney which they required me to hire! There went my money 5k IN, 5k out… plus they wanted $1395 for their attorney which did nothing.

    As I have since found out; S/S is supposed to have seen that there was an attorney..(arguably, it wasn’t true that the attorney did anything or S/S would have known) and S/S is supposed to deduct from my money, any attorney fees. They didn’t. Oops. MY FAULT. WHAT?
    YES, S/S said I should have known I had to pay an attorney from the backpay. What? I argued it, with my sister helping me down to the S/S office with all the documents, me still in a flare that required 60mg day of prednisone, just to be able to walk with a cane. And pain that remained even w/that. S/S listened politely. Agreed it seemed wrong, but well, they (S/S) had made a mistake not paying the attorney and the attorney needed to be paid…so.
    Yes, they would take it from my s/s disability payment at $40/mo for 3 yrs. to pay the attorney from AIG that didn’t do anything.

    So, as of this year..August… I will have paid off my $40/mo and I will begin to get that money back in my S/S check…just in time to pay the increasing specialist cost from $35 to $45 for three dr. every month.

    I seem to get carried away with my story, but I do want to pre-warn anyone who has a disability policy, that 1. Be ON the policy when you leave work. 2. file for your own s/s disability (or have someone in family help) don’t use an attorney. 3. Be ready to argue to get what you paid for from your policy. Even though S/S Disability approved me in 4 mo for 7 years (the longest they can approve you for before re-certifying) the AIG policy says they will review my disability every year. Which means, your doctor will have to send notes, you will have multi page paperwork to fill out, all drs. you have seen, related or not to RA, will have to be listed and they will have to give your medical history to the insurance company. And if any one of them is too slow getting the paperwork back to AIG, your check will stop.

    If you have a different company for your policy, I hope it is better than AIG, but it seems the reason “we” (the American people) couldn’t let AIG fail, was because they were SO BIG. So, I will guess that you may have your disability through them also. Good Luck.

    I sometimes wonder if it’s worth it to fight for $144.05 mo. every year. But I’m just angry enough to MAKE them pay that when they’ve passed off their responsibility to the gov’t. and your/my taxes to take care of me until my retirement age.

    Well, Andrew, I’ve done it again. Raged on..yet, you’re right, I DO try….and most times, succeed, in letting go and letting God take this burden. His yoke is lighter. 🙂
    Connie

    Reply Created with Sketch. reply
  • By Andrew Lumpe, PhD Moderator

    Good to hear from you again. Rituxan is still working and I just started my second round of treatments…2 at 2 week intervals then 4-6 months off.

    No, my work disability plan is not from AIG. And they have both a short-term and long-term plan.

    So sorry about what’s happened to you…so aggravating and stressful! Thanks for sharing your experiences and hopefully others can benefit from it.

    Andrew

    Reply Created with Sketch. reply