Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
It's a long rant - feel free to throw tomatoes.
Last week i got this approval letter from the insurance company for a year for my treatment. big relief. with the labs back for the titers yesterday - it seemed like everything was falling into place to set up for my first infusion.
....that is, until i read the fine print on the approval letter. it's for the hizentra. my pulmo doctor put in it for it over two months ago (and it just came through) - before i went to see the immunologist. at the time we thought it could take six months or more to get an appointment with the immunologist and my doctor felt it was important that i start treatment as soon as possible. their outfit just wasn't set up to handle IVIg or all of the immunological testing. they managed a hizentra approval though, by golly.
when i found out i got the appointment with the immunologist - and in only a month or two - their office recommended wait on the hizentra infusions so tests would not be skewed...and this is what I did. I had forgotten that the request for approval for sub-q had been submitted.
meanwhile, one home infusion group (that my pulmo doctor uses) called me ready to set everything up - which sounded encouraging until I realized it was for the hizentra (more confusion)...and this wouldn't fit with my immunologists recommendation for IVIg (gammunex).
so here we go again waiting for approvals from insurance all over again. Please tell me this isn't going to take another two months or more - I think my head might explode.
the immunologist uses a different infusion group that will be able to come to my home to do the dirty deed....but first I have to be deemed worthy by insurance.
the immunologist's office, at least, is on the ball and called their infusion people...and their specialty pharmacy called me this afternoon to get basic information on me and an address to ship the goods. they've already submitted the paperwork to the insurance people for the IVIg (within an hour of receiving the order) -- they seem super responsive. insurance is the bottleneck.
they (the specialty pharmacy) are acting quickly and they say they will contact me as soon as insurance approves to coordinate shipment of meds, epi-pack, IV pole, etc...and to go over side effects, preparations, and what to expect. they call again right before they ship....and then the nurse who administers the IVIg will call to set things up and get directions, etc.
we have no way of knowing how long it will take to get approval. i fear the worst.
my frustration (besides an incredibly hectic, high stress job situation) is being in limbo for months now - knowing I have what i was told a is a condition that is 'life threatening without treatment'...but yet, i can't seem to get treatment without going through this goat rope of epic proportions while some bureaucrat decides if I am worthy.
it all sounds like nothing to you pros, i know - but today it really started getting to me. the job is having a lot to do with this -- plus facing the unknown...and, well, not feeling well doesn't help. there's nothing i can do to expedite this. plus, deductibles reset in january. the longer this takes - the closer together those two out of pocket maximums will be.
i guess this is all supposed to be character building - but i have to say that today i think i reached the end of my rope and i know i need to do something to just calm down.
like breathe. i had to remind myself to breathe several times today. all the classic physical symptoms of stress made an appearance as well.
this isn't like me. when stress causes physical symptoms - it's time to step back and say 'whoa!'
i'd make a nice stiff drink but i doubt that would do much for my immune system. i'm thinking a sledge hammer to the computer might help. percussive maintenance.
yeah, i know. it's a big pity party. you are all invited to come. bring food.
Last week i got this approval letter from the insurance company for a year for my treatment. big relief. with the labs back for the titers yesterday - it seemed like everything was falling into place to set up for my first infusion.
....that is, until i read the fine print on the approval letter. it's for the hizentra. my pulmo doctor put in it for it over two months ago (and it just came through) - before i went to see the immunologist. at the time we thought it could take six months or more to get an appointment with the immunologist and my doctor felt it was important that i start treatment as soon as possible. their outfit just wasn't set up to handle IVIg or all of the immunological testing. they managed a hizentra approval though, by golly.
when i found out i got the appointment with the immunologist - and in only a month or two - their office recommended wait on the hizentra infusions so tests would not be skewed...and this is what I did. I had forgotten that the request for approval for sub-q had been submitted.
meanwhile, one home infusion group (that my pulmo doctor uses) called me ready to set everything up - which sounded encouraging until I realized it was for the hizentra (more confusion)...and this wouldn't fit with my immunologists recommendation for IVIg (gammunex).
so here we go again waiting for approvals from insurance all over again. Please tell me this isn't going to take another two months or more - I think my head might explode.
the immunologist uses a different infusion group that will be able to come to my home to do the dirty deed....but first I have to be deemed worthy by insurance.
the immunologist's office, at least, is on the ball and called their infusion people...and their specialty pharmacy called me this afternoon to get basic information on me and an address to ship the goods. they've already submitted the paperwork to the insurance people for the IVIg (within an hour of receiving the order) -- they seem super responsive. insurance is the bottleneck.
they (the specialty pharmacy) are acting quickly and they say they will contact me as soon as insurance approves to coordinate shipment of meds, epi-pack, IV pole, etc...and to go over side effects, preparations, and what to expect. they call again right before they ship....and then the nurse who administers the IVIg will call to set things up and get directions, etc.
we have no way of knowing how long it will take to get approval. i fear the worst.
my frustration (besides an incredibly hectic, high stress job situation) is being in limbo for months now - knowing I have what i was told a is a condition that is 'life threatening without treatment'...but yet, i can't seem to get treatment without going through this goat rope of epic proportions while some bureaucrat decides if I am worthy.
it all sounds like nothing to you pros, i know - but today it really started getting to me. the job is having a lot to do with this -- plus facing the unknown...and, well, not feeling well doesn't help. there's nothing i can do to expedite this. plus, deductibles reset in january. the longer this takes - the closer together those two out of pocket maximums will be.
i guess this is all supposed to be character building - but i have to say that today i think i reached the end of my rope and i know i need to do something to just calm down.
like breathe. i had to remind myself to breathe several times today. all the classic physical symptoms of stress made an appearance as well.
this isn't like me. when stress causes physical symptoms - it's time to step back and say 'whoa!'
i'd make a nice stiff drink but i doubt that would do much for my immune system. i'm thinking a sledge hammer to the computer might help. percussive maintenance.
yeah, i know. it's a big pity party. you are all invited to come. bring food.
So so so sorry you are going through this. When I was first diagnosed my very inexperienced immuno doc dropped the ball, twice and then said we could try to get me approved again (after months of waiting and me feeling worse daily) when our insurance changed. WHAT?
SO I changed docs and he got me approved in 5 days. Same ins. Wondering if there is anything your doc can do to speed up the progress? I hope so! And I hope you get just what you need right out of the gate. HUGS! And thanks for the snacks.
Hugs right back . -and yes - all of this good food is free of allergens and calories.
Really sucks you are going through this. Unfortunately it is SO so common :(
The good news or silver lining? Sounds like one of the docs is on the ball. It is recommended that one be started on IVIG, not subq, then move to subq one week after the 3rd treatment of IVIG. IVIG "loads" you up on IViG and your numbers jump much quicker than starting on subq. Once you get your numbers up then subq will keep you at a steady pace without any dips (troughs).
Hang in there. I know it doesn't sound like much advice. Keep hanging on though ok? Try not to think about it, focus on work and just do your due diligence and follow up once per week.
BTW - rant away :) you are in a great place to do it ;)
Maybe the amount was low because I only had a diagnosis of hypogammaglobulinemia and not a formal diagnosis of CVID at the time?
I have to disagree... there's no reason why any modern country should put people through this.
I mean this in the nicest way possible, but stories like this make me think that the insurance side of the US healthcare system is so incredibly broken.
To join in on the pity party, don't worry I brought a enought cheese to go with all my whine....
I was just ranting to Kelli. I called to get an appointment as a new patient with an internist. They mailed me paper work and said send it back, we'll go over it and call to set up appt.
They called yesterday and said the doctor isn't willing to take me on. When asked why, the girl said she didn't really know, but that I was welcome to apply again in 8 months!
This is the day after my gyno discouraged getting pregnant because it would be too hard on me and my immune system. then raising a child with a bad immune system is even worse because baby's have a lot of germs. Dude, for real? I never thought about any of this? Wow, what's next, I'm going to find out smokings bad or crack kills? I'm being treated people! Im not bubble boy!
Grrrrrrr.
@Zephaewryn are you working with Accredo by any chance?
I found that you can help move the process along with phone calls to them all- the insurance company, doctors, and pharmacy. Squeaky wheel gets the oil. I kept calling and asking, what can I do to help move this along? Surprisingly, they told me! The pharmacy would say well we are just waiting for the doctor to sign this, you can call and ask them to send it. So I'd call the doctors office and they'd say, oh yeah, that's here, let me put it on his desk to sign. Then next day I'd call the pharmacy and say did you get it, what now? oh now we are waiting for BCBS to ok it... I'd call them! It's annoying and tedious, but it works.
They are all busy, so it's easy to let your stuff (or anybodys) fall to the bottom of the pile. I really hate to be THAT person, calling all the time and being pesky, but it does get results.
Good luck.
Yes - Accredo is the specialty pharmacy. So far - they seem to have their act together.
Can you believe that UAB is not on Aetna's 'approved list'?!? My little trip to the immunologist is setting me back about $600...they paid about $400. And approving only 11 hizentra treatments for a year? I have a feeling things might get ugly with these people.
Accredo is good and on top of things. I use them also. The nursing department was a little flaky at first. You could tell it was because she was understaffed, but otherwise super efficient.
I've been having such a horrible time...feeling bad and waiting forever for Satan (uhm - I mean Aetna) to get off of their duff and approve my treatment. This morning a nurse called from Accredo - my specialty pharmacy - and talked to me about the insurance and where things stood. I know I sounded horrible. I was really depressed on top of feeling like garbage.
She called back this afternoon - she is this wonderful, bubbly, lady who is absolutely adorable. She said, after I talked to you this morning and you sounded so bad - I made it my mission of the day to get this insurance taken care of right away. She said that the lady at Aetna was so ugly to her and kept cutting her off and not listening. She said she was about to scratch that woman's eyes out. She asked for a case manager because she just wasn't putting up with that. She said- I KNOW my job! I wasn't going to have that lady jerk me around like that.
When she got with the manager - she said it was like she was talking to someone she had been friends with for years. She talked to her for about 45 minutes and she got the approval! Not only that -- but the drug itself for the IVIg (gammunex) that is so expensive...she was able to get that taken care of through my prescription drug company (Express Scripts) -- she said that they (Accredo) and Express Scripts are basically the same company....so my copay for that horribly expensive drug will be $25. Can you believe it?!? I can't. The nursing care portion of it will go through Aetna and she's trying to work it so I might not have to pay the extra out of network costs. Even if it is out of network though, the nursing care is so much less expensive than the drug. I am home free at this point.
She did tell me though that my plan starts over in November - so I may have to start over with all of this out of network 'out of pocket' and deductible but I'm ready for that. She told me that I should sign up for exactly the same insurance next time because the coverage really is good (even if some of their representatives are not).
She gave me her direct number in case I had any questions or concerns about the insurance. I asked her if I had any problems with other companies or the IRS if I could get her to take care of that for me. She just laughed and laughed. What a great person she is.
I asked if she would be the one to administer the drug. She said no - that it would be someone else. I told her that was too bad since I was going to bake her some cookies. She said - you tell that other nurse that she better be bringing me some cookies! LOL
So - the next step is that someone will call me tomorrow to set up the shipment (refrigerated gammunex, epi pen, IV pole, etc) -- and they are hoping we can set up the first treatment next week (even though Monday is a holiday)....so keep your fingers and toes crossed,
And Hizentra /sub q is billed monthly, you get your box with 4 weeks of supplies inside.
My drug supplier is equally wonderful...as is my docs nurse. She called me the other day (she manages is PIDD patients)..
"April? This is Gloria. How are youuuuuu??" She sounds a bit like Edith Bunker from All In The Family--but super smart! And they get back to me right away.
I'm so excited for you! YAY!
This waiting has been SO stressful. To make things worse, I started having horrible CPU performance issues, my code wouldn't work correctly in the production environment, walked out the front door and BOOM (one seriously purple butt cheek) - and then my number 1 best friend and alpha cat starting biting my ankles because I was giving the computer too much attention and wouldn't let him play outside....and my house looks like a tornado went through it. It doesn't sound like much - but this girls was getting stressed.
Everything seemed to come together today. My laptop is now working properly, my code is working in production, my medical supplies arrived, the nurse called and scheduled...and phelix the cat finally got to go play in the grass. Can't do a darn thing about the purple hiney or the house right now -- but I am one happy camper. If something didn't give soon - I was afraid I was going to have to shave my eyebrows and commit hari kari! (or at least put a bulls eye on the wall that says 'bang head here').