Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Perhaps this will be helpful to anyone who is a month or two behind me - and bear in mind two things, please. One, I will sound a bit frustrated here, but I'm genuinely not; I'm stuck in the system now, and this is how systems work. And two, I'm in the US, and I have reasonably good health insurance. My experience may not apply across the board.
I got a scrip for Humira on December 29, and I will not actually have the product in my hands until January 24. However, I have spent about four hours so far this week on the phone. At no point has anything been denied here - the prescription has been improved by the insurance company, the reduced-pay card from Humira was approved. There have been no actual problems. But the the sheer number of phone calls has amazed me. The pharmacy that will eventually send it needed to have a lengthy discussion with me about the shipping process. I had to call to activate the Humira card (which will lower my copay, this is a good thing), and that meant being on a hold a few times. I was called by the insurance company to verify information. I was called by the insufferably perky script-reading Nurse Ambassador ("I'm so HAPPY to take the Humira journey with you!!!") who wanted me to list three goals I have when I go on the Humira (huh?) and wanted to talk through the process of doing the injections. She needed to read all the fine print and I had to answer 'yes' to indicate that I understood. The shipping pharmacy called again today to review the information, just in case, apparently, I moved in the last 24 hours and forgot to mention that to them.
Remember point #1 above: I am happy to be starting Humira, and I realize all these people have a job to do. I am glad someone is taking the time to make sure I understand the possible side effects, and understand the injection process. I am grateful that I could ask questions. I am really not making fun of anyone - I just have a really low threshold for perkiness, and I could have done without all the verbal exclamation points from someone telling me how exciting this was going to be.
But, seriously, I'm self employed, time is occasionally at a premium, and I had no idea that I was going to spend so much time on the phone this week. There are weeks in the year where I would literally have had to hire one of my workers for a few extra hours just so I'd be able to take an entire afternoon to deal with the phone calls. This week happened to be a light one. So, if you're going to be starting a biologic, know that this might happen.
Also, when I got the Rx on Dec 29, I let myself get my hopes up that the turnaround was only a few days away, not realizing that it would take nearly a month. It's a bit like when a volunteer told me I was 'right around the corner' from the end of a marathon and it was still four miles away. I am rationing out my hopefulness carefully, and would have held on to that particular bit had I known it would take a full month.
Oh, one last thing: there were very, very few things all these people told me about the Humira that I hadn't already learned here. So, kudos to the support system!
i second your feelings
I had put in an adverse reaction notice with actemra a long time ago - yesterday they called and asked me to repeat the entire adverse reaction report - you know for the FDA they said... - well where did the first one go? so much wheel spinning administrative wise.
and this is for EVERY biologic you go on. has to do with the astronomical cost I am sure. notice how you don't get any calls on your mtx.
I found doing this along with high school and college crap for my kids scintillating. you might as well duct tape a phone to your ear.
depot
biologics are a prescription drug.
do you have prescription drug coverage?
per needle. as in per week. so more like $4000 per month - some are covered by group health insurance,and federal and state safety net insurances. pre-authorizations go through and your approval or denial is indicated. you go on the one that is covered. and your co-pay is indicated to you in advance.
if you have prescription drug insurance, then look up on our prescription drug formulary list the first one or two biologics usually prescribed when/if dmards fail: that would be enbrel or humira - what does your formulary say?
many of the biologic companies offer co-pay assistance programs (they eat the say $60 co pay) if your health insurance is group commericial (not government.)
i don't think many folks do biologics as cash private pay.....
even Medicare covers a biologic or two.
depotblue
Peggy
I have a picture in my head of my dad administrating his own injections because he was a diabetic? Is this the same?
how are the work outs? :)
it's nothing. I used to do it at work with my office door closed and locked and I had a college fridge. so on lunch, while working. :) My daughter wore a scoliosis brace like 24/7 when I was starting injections. her pain was real. the stuff i saw on you tube for first injections when I decided (bad idea) to go look, was histrionics. I passed on the teaching ed in the doctor's office. I did not need it. I live alone. this is probably one of the easiest things to do around this place.
for myself, I want and request the pre filled syringes. almost all the biologics will give you a choice between the dath vader unnecessary auto injector for folks that pass out if the think they are going to see gasp a needle and the alternative use of a simple pre filled syringe. the pre filled syringe has no spring load on it and half the size of the piercing needle. i find it smoother. there is no wooooooooooosh and the med going in all at once. you control the push and the needle is smaller. it if matters it cost less to the insurance. for me it's the same as doing the mtx injection - so both are nothing to me in terms of pain or inconvenience. I did not like the actemra needle which was a weird hybrid. I have also done infusions. those are a pain in the ass because you have to kill time at the hospital and the set up - but there's a month of needles and i guess just plain being grateful for whatever the hell the insurance will cover right ? :)
way less invasive than my friends who are doing cancer treatments. we are lucky to have such easy administration.
I keep sharps boxes around. the biologic company gives them to you for free....you know for their $4000 pay back. here's some other tips, if you are traveling for work extended or family, you can ship to that addie. you can ship to work. you can re-use the ice packs and you can make styrofoam sculptures out of the useless packing chests.
depot
And this isn't the place to get political, but I think it's reasonable to point out that we all have a pre-existing condition, and it's in our best interest to stay awake and watch what's happening in the US right now. Let's for heaven's sakes not debate it here, but I think we can agree that the topic of health care has a big impact of all of us, and we need to be well informed.
Rituxan, my drug of choice, is billed differently, depending on agreements providers have with insurance companies. For example, the hospital where I have infusions bills insurance for $38,000 for 2 infusions. However, they have a cooperative agreement with Blue Shield, in my case, to accept $28,000. The hospital then writes off the other $10,000. I have my infusions in hospital chemotherapy center, so the infusions are considered a hospital procedure and are fully covered by insurance. I also don't have to deal with the hassles of pharmacies and deliveries, and a pair of infusions lasts 6 months. I don't know frquency on other drugs, but it's useful to keep an eye on the calender. My rheumatologist's office handles the insurance approvals, the transmits orders to the chemo center. I call a month ahead, to make sure we're on the same page. I make a single call, to get everything started, then receive another call from the chemo center.
I've been on biologics in two provinces. In both cases, the doctor evaluates and approves the biologic. The insurance nurse does the paper work, and within 5 to 7 days it is approved. In the case of injections, that means you get the drugs within a day. In the case of infusions, it usually takes a week to get an appointment and get started.
No phone calls, although in the case of Xeljanz, I did get a lot of encouraging phone calls (probably because it was a new drug they were actively promoting in Canada) and some financial help. In Alberta I did not need company assistance, because provincial insurance paid all but $25. In BC, Pharmacare doesn't kick in until you have bought $2500 for our family, and something like $3500 and then I pay nothing. Forunately my husband has supplementary insurance from his work, and that pays the bulk here in BC and the company pays the copay, usually around $300 till the provincial insurance kicks in.
But the big issue, is how much cheaper the drugs are in Canada. I pay between $1500 (Simponi) to $1700 for the rest of them a month. Rituxan has to be the worst difference! I paid $2000 per infusion - so $4000 total and the company had an infusion site, and they covered the cost totally.
So when I see $38,000 (minus $10,000 of course) for Rituxan, or in another case, I know a woman who was paying $75,000 for the two infusions, and I was paying only $4000 for those same 2 infusions, and I would have to say that the Canadian system is so much better it is ridiculous.
Whatever you hear about our dreadful "socialist" system of health care in Canada (and we prefer to call it universal health care) which is free to have, think about me paying half the cost for injectible biologics and 7 times less for infusions like Rituxan. And no hassle, no phone calls, almost no wait time.
Rant over!
get-patient-to-expedite-person-so-I-can-get-a-refill-bonus-based-on-the-number-of shipments-sped-out-today at $4000-oftheorphandrug-person
I notice that 6 months ago when I had an adverse reaction to actemra (doubled cholesterol, boils, locusts, dogs and cats mating in the streets, abnormal hematology) it took actemra's nurse ambassador a 1/2 year to actually write the adverse reaction report for FDA. I guess when the product is not moving along, out, it's a little slower for the ambassador.
depot