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The Price Tag on Potential Comfort

The Price Tag on Potential Comfort

At my last rheumatologist appointment, my doctor asked me how the transition from Orencia subcutaneous injections to intravenous infusions was going. It’s too soon to compare the benefits of these two drug administration methods on my RA symptoms, as it may take a few more months to receive the full benefit of the IV medication. However, my doctor sees me as a whole person, and takes into account the ways medical treatment can impact a patient’s life beyond disease control. He asked if I was finding the infusion visits inconvenient or if I was having a problem with the IVs. I told him his office’s infusion center is very efficient and friendly, and that I’m okay with getting IVs, but that the cost difference is significant.

When I was taking Orencia injections, the manufacturer offered a copay assistance program, so I was only paying five dollars a month. This program does not extend to the intravenous version of the medication, so the out-of-pocket portion I’m responsible for is $120 per month. That comes out to an annual difference of $1,380!

At my prior appointment, my rheumatologist and I decided to switch to the IV form of the medication because we both agreed that my rheumatoid arthritis disease activity level was too high, and I didn’t want to increase the dosage of my other medications. I’d been frequently ill throughout the months prior, and didn’t feel like my immune system could handle much more suppression. My doctor said having the drug go directly into my blood stream could improve its efficacy, and I did well on Orencia infusions when I was last on them in 2008, before I went off of all my meds in order to get pregnant. While the infusions seemed worth a try, he was not able to predict how much my out-of-pocket cost would be, as insurance rates vary so much from plan to plan. When his office called me a few days after my visit to let me know how much each infusion would cost, I balked at the price. Yet, it’s hard to place a value on good health.

If I could go to a store and find “RA remission” on the shelf, I’d happily pay $1,380 for it. However, when we try out new medications, we aren’t guaranteed any results. I may spend this money and find that the infusions make a world of difference, and are well worth the financial cost. I may also discover that I don’t see any improvement on the IV drugs versus the injections. It’s a crapshoot, and an expensive one at that.

Having rheumatoid arthritis involves so much uncertainty. It’s impossible to predict how I’ll feel on a given day, how I’ll respond to an activity, or how I’ll respond to a medication. My sister also has RA, and she found that Xeljanz works wonders for her symptoms. Yet, when I tried the same medication I didn’t notice any improvement. Even people with the same disease and the same genetic makeup respond to RA drugs differently. Therefore, I have no way of knowing whether it will be worth it to shell out the extra money for Orencia infusions or if I’d come out ahead sticking with the injections.

My doctor and I ended up deciding to give the intravenous Orencia a six-month trial run. At that point we’ll evaluate how I’m doing, and I can determine whether I want to stay on this pricey form of the medication. I like having a plan, and that’s a plan I’m as comfortable with as I can be with my current options. Yet, I know that next week when I go in for my infusion and I have to ante up the $120 required before treatment, I’ll wonder if the odds of this bet are in my favor.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Tamara Haag moderator author
    1 year ago

    Hi Kg9158,

    I’m glad to hear that your insurance did pay, but I hate to hear about the scare and hassle you had to go through. You are right that many people go without treatment because they simply can’t afford it. This is a heartbreaking situation, and all the more so when considering that companies are actually increasing their prices on these medications from year to year (more info here: https://rheumatoidarthritis.net/living/the-increasing-costs-of-medications/). It’s very frustrating!

    Thanks for the update, and I do hope that the medication is effective for you. Thanks for sharing your experience!

    All the best,
    Tamara

  • Kimberly
    2 years ago

    I left a comment about the price of Orencia because my insurance company statement says I owe $6,000 for my first I.V. infusion. The billing dept of where I go had told me that they have the medical assistance co-pay. But I just saw where you said it doesn’t apply to infusions?? Really? If thats the cost I quit! I appreciate your info!

  • Tamara Haag moderator author
    2 years ago

    Hi Kg9158,

    Obviously I can’t speak to the particulars of your insurance plan, but I can say that I receive Orencia infusions and with the copay program through the pharmaceutical manufacturer and my insurance I pay a total of $5 per infusion. My rheumatologist’s office assisted me with getting the copay assistance program set up.

    Wishing you luck for some assistance with these high costs,
    Tamara

  • Kimberly
    1 year ago

    Thx Tsmara! My insurance does pay. But when I initially began Orencia, the office called to say my insurance had approved it. It was because of a coupon from the pharmaceutical company and would only pay $20.
    Well…I had my first infusion and a few days later I got a statement from Cigna, my ins. Co. It said I owed $6000!!?
    So I went ahead amd had a cow! Then called my doctors billing office. And indeed it was correct!! I did some research and found that the pharmaceutical company only pays for the self injection and the shots. Not the infusion. So you can imagine how I felt. Aftet haggling back and forth they were going to habe the medicine billed through the specialty pharmacy. Then I just had to have them backpay which finally they did. Whew! I don’t know how some people do it. The funny thing is that Orencia is only $6000. The Simponi which you rarely hear about cost $13,000 per infusion. The extended release Predisone cost only $10 but to retail at $9400??!! I guess people who aren’t insured and can’t afford it just forget about treatment. It’s so scary and unfair. Have a good night!

  • Richard Faust moderator
    2 years ago

    Hi Kg9158. I can’t speak to what the program previously covered, but I did find information for an Orencia copayment assistance program for the infusion drugs. I do not know whether the expense of the actual infusion procedure is covered at all. Your doctor should be able to assist with more information. Best, Richard (RheumatoidArthritis.net Team)

  • Kimberly
    2 years ago

    I just had my first Orencia infusion. It was much cheaper than the Simponi I was on. It was $13,000 a pop! But I just got my bill from insurance company and its saying that I owe $6,000! I was told that they use the coupon or whatever and my co-pay would be like 20 bucks. I saw on here where someone said that the coupon doesn’t apply to I.V. infusions. Does anybody know if this is true? I never had to pay a dime on the outrageous price of Simponi!

  • dorrie17
    3 years ago

    I’m on Medicare and my only income is Social Security. I’ve gone through all of the first line drugs and couldn’t tolerate any of them. The last one almost put me into liver failure. The doctor says I need to try the biologics but I have a 30% copay on these and can’t possibly afford them. Medicare won’t allow the drug companies to give financial help to Medicare patients (thank you Congress). Is anyone else in this situation? Is there any way around this?

  • Kimberly
    1 year ago

    Hi Dorrie. I can’t imagine how you feel. I had to become disabled but luckily I have Cigna as primary with Medicare second. If you read my prior comment to Tamara I had a scare after I was told I am covered for Orencia. Had infusion then received bill for $6000. I was gonna see if you had been put on Simponi before? It was much more expensive $13,000 and the drug maker provided a coupon that covered its entirety. It’s just not right! These drugs do not cost that much! I so wish I was loaded with money. I’d give it all away. It has got to take a toll on you emotionally. Please keep me updated. And I have an infusion Friday. I will ask my doctor. She considers everybody’s penny, very money conscious. Thank goodness. What state are you in?

  • Jillian S moderator
    3 years ago

    Hi Dorrie,
    It sounds like you’ve already done your research but I have a few suggestions (if you haven’t tried them already).
    Two financial assistance programs that may be able to help you with your costs are: Partnership for Prescription Assistance at https://www.pparx.org and Needy Meds at http://www.needymeds.org/index.htm

    You may also check to see if there are specific manufacturer coupons.

    Feel free to request more community feedback in our forums as well:https://rheumatoidarthritis.net/forums/.

    Best,
    Jillian Schon (Rheumatoidarthritis.net Team)

  • Tamara Haag moderator author
    3 years ago

    I’m so sorry to hear you’re in a situation where you don’t have the financial support to be able to afford drugs that might help you. It’s so frustrating that so many people are suffering and unable to take advantage of treatment options. I wish you all the best, and wish you didn’t have to deal with this!

  • Carla Kienast
    3 years ago

    The costs can be amazing/frightening/devastating, can’t they? Congratulations on having a rheumatologist that cares enough to ask. So many doctors just prescribe without taking into account the overall impact (including comfort and cost) to the patient. I only have to pay a $50 copay for my infusion, but I am aghast when I get the EOB and see what my insurance company pays. Thanks for a thought-provoking post.

  • Tamara Haag moderator author
    3 years ago

    Yes, a rheumatologist who sees the patient as a whole person instead of a conglomeration of symptoms is a blessing indeed! It’s so interesting to hear others’ costs and coverage details, as it varies so incredibly much. Thanks for sharing, Carla!

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