Your first mistake is letting your physician handle your insurance company. The specialist pharmacies do a much better job. The other thing I've found is that patients should stay out of the loop altogether. Let the pros talk to the insurance companies, we are just amateurs. In over 25 years, 350 infusions, I have never had a problem getting infusions approved. There have been a lot of insurance payment errors, but I've never come close to missing an infusion. .

You are damn lucky I'd say. I plan to do whatever it takes. That's who I am. I have owned 2 business with over 100 employees so I do know a bit of the insurance landscape. That being said, I am in another state now, Texas, and things work a little differently here. In Michigan my Blue Cross was consider the 'Cadillac' of coverage. Down here, Blue Cross 'ain't shit' I have come to learn. My employer has switched companies 3 times in 5 years. Gee, I wonder why.

What I dread is dealing with ignorance and evasive behavior. I mean who would give the reason for discontinuing IVIG treatments because the patient had not had an infection since May? If I was looking for a way of dumping an IVIG patient I could certainly come up with far better language and a more convincing case myself. That is the frightening component for me, 'the shuffling'. I suspect there will be lots of layers to accomplishing my goal, which I have no doubt I will win. The thing is I am 60 years old, have a full time job, and have a nasty case of CVID accompainied by several of the associated disorders that all together can bring me to me knees fast. It's an incredibe balancing act.

Believe me I won't miss an infusion this soon in the process. If I need to I will hire an attorney. Hopefully that would be nearing the 'last resort' status. btw, just for 'interest' sake, I have already had 2 intelligent people working in the industry saying the opposite regarding who should be handing what. So far I have gotten resounding agreement that one should allow the physician's experienced staff handle things at this level, which is close to what you have said. 'Special Pharmacies' I have heard of but have not had any experience with. Where do you live and can you fill me in on these pharmacies that you reccommend so highly. The extent of my knowledge of Special Pharmacies are that they are they are the cooks and recipe makers of pharmacies. Great for menopausal women. How do they relate to IVIG plasma products?

Thanks for the comments and info. It takes a village.

Best wishes to all and sincere thanks.

With my insurance, I do not have an option to use any pharmacy other than Cigna's TeleDrug. It's the review board in the pharmacy department at Cigna that refuses to authorize (or deny) treatment. The effect is the same--no treatment.

what a nightmare i am so sorry you are having to go thru all this.

From what I understand, CVID can be expressed in a variety of ways. Most of us have low igG levels and chronic infections--but we can also have other things as well. In my case, I have low Ig levels but I also have leukopenia (low neutrophils and lymphocytes) and sometimes I have low platelets. My general immunity is impaired as well as my primary immunity. From what my doctor said, that happens in a subset of patients with CVID.

In 2009, Cigna established new criteria for authorizing IVIG treatment. They are not basing it on the diagnosis so they are not taking into account the variations with which this disease presents itself. The criteria, as best I can remember is that your IgG level has to be below 400, you have to have documented infections that needed multiple courses of antibiotics to resolve, and you also had to have less than a 20% response post vaccines. All three must be met to qualify for treatment.

It sounds reasonable on the surface, right? Nope--not for all of us. If you are on IVIG treatment and your immunity is such that you do not have as many infections as you had before--and they did not take multiple courses of antibiotics to clear--you no longer qualify per these guidelines. If your IgG level is 401, you do not qualify. If you are currently on IVIG treatment, unless you miss a treatment, you will have IgG levels above 400. If you are vaccinated after having had IVIG treatments, you could have a greater than 20% response to the vaccine. So once again, if you are having treatment, and it is doing what it is supposed to do, with the new guidelines it is possible that you may not qualify for treatment.

Anybody else running into stuff like this, or is it just my karma this time around?

what a nightmare!!!!!!
hugs

Thanks for all the support and information.
I did see my immunologist yesterday and he actually referred to the person who wrote the letter from Blue Cross as "a complete moron". He told me that they had already started the fight with them and that I should not worry. So I will now just worry less.

My doctor is sorta a big shot, but I understand that may be meaningless in the insurance world. He is the head immunologist and director of the Dell Medical Center in Round Rock Texas. He specializes in childrens immunology, but he also takes patients like me once in awhile. It took me months to get in to see him, but it has been a joy ride ever since. He is wildly smart and adamant about most things medical. Since seeing him for a year, I think we have developed a very respectful relationship and even personable, although it took time. The man is all about business and my respect for him is off the charts.

I have to believe that he and his staff can help me with this. I didn't ask them to, they just picked up the ball and ran. However, I know from years of frustration that anything could happen so if I end up needing an attorney at some point I will get one. I will not tuck my tail on this one.

Without these treatments I will die. I am 61 years old and was near death for a solid year before I began my treatments. The doors opened up for me with my diagnosis and many other things fell into place. I began my recovery, and now I have a life. It's not perfect for sure, but it is. If I lose my IVIG I lose everything, and he agrees. He simply nodded in agreement when I said that I will be dead in a year without IVIG.

So, at this point I am hopeful that I have a strong medical team that is going to take on Blue Cross for me. I am not fool enough to think that things can't go wrong, but I am hopeful.

Also, had my IVIG yesterday and my fears were unfounded this time. I do have an active bladder infection, which is now getting better, and had my treatment in spite of that. The last time I was ill and had treatment I landed in the hospital for 8 days, so I felt intimidated this time, but not even one issue. The difference for me has been the switch over to Privigen from GammaGaurd. I am getting ready to go to work now. I would never have believed this 6 months or even a year ago.

I wish the same joy I feel for life now for each and everyone of you. We all deserve this after mostly long difficult journeys.

I sincerely care about each and everyone of you. I have found so much support and information on this site. I know that I will continue to join in here for the rest of my life. I look forward to what everyone has to say. Where else are we to go to find such information and unconditional love.

Thank you to all my friends.

I am sorry to hear of your troubles. I was diagnosed with CVID about 4 months ago and I too have Cigna as an insurance provider. They denied my physician's request for treatment the 1st time (as they do with everything), and they then approved 3 treatments per a phone call from my immunologist. I had low iga and iga levels (around 240 & 14), but I had no history of constant illness. I only went in for a regular checkup, and after multiple bloodtests this was the diagnosis. I have to get another round of blood tests in about 3 weeks to evaluate my levels (trough levels). Hopefully my levels will show some improvement and insurance will continue to cover the treatments. I will keep you posted with any issues I have with Cigna.

Eveybody BLUE CROSS SUCKS AT LEAST IN THE STATE OF CALIFORNIA. IF you are paying for blue cross, why not take your money and go KAISER PERMENANTE. They treat NO PROBLEM. I had blue cross hmo, and medi'medi at the same time my doctor laughs at blue cross and only took medicare/medical.

Stimpy - Kaiser is not without its own problems. That is who I have. They do not employ very many specialists (JUST got an ent and I've had them 5 yrs, no immunologist, etc). The allergist who diagnosed me, refused treatment after I broke out in eczema, something I have had for 20 yrs. The only person in my WHOLE county who could treat me, refused. Said SHE couldn't risk it. I had to fight Kaiser and get an outside referral and now see an infectious disease specialist. He's 'learning as he goes' but at least he will give me my IVIG so I don't keep getting sick and lose my job.

Agree with Stimpy on Blue Cross of CA (I have them through my company even though I live in NC). Last week I was told that they changed pharmacy and no longer cover any IG medications! After several phone calls and rude customer service people, I finally found one that actually cared and he cleared it up in about five minutes. If I wasn't willing to call over and over again, I would be without medication now... incredible. Who ever you are with, find your department of insurance and be ready to send a complaint if needed... even the threat is very effective.

I just spent all morning on the phone with Cigna. Not only did they make a mistake in billing--which took multiple phone calls to resolve--they have absolutely no record on file that my doctor has even applied for pre-authorization for IVIG. The challenge in getting status is that there are so many departments that could potentially deal with pre-authorization for IVIG. I was told that it was pharmacy--they have no records. I was sent to medical--they have no records. I was sent to a supervisor, who did not have access to screens. She checked all over the place, and could see the previous denial, but could not find any paperwork in progress regarding the last request that has spanned more than two months. All of that took two hours, and I am exhausted and discouraged. I left a message for the doctor's office to call me. That opens another can of worms--I have only called twice in the past two months to check on status and they consider that to be two times too many.

Maybe tomorrow will be better.

I'm in California and I have Aetna through my work. It took a month for the authorization for my first treatment to get processed, and I've just now crossed the 6-month mark where my need for it was being reevaluated. My infusion center said that they handle all of the insurance renewal issues for each patient, and told me to not worry about it. They must have done something right, as I was able to get my last infusion without any problems.

So far I'm very pleased with Aetna. My doctor says I have great insurance, and that they'll cover just about anything she asks for, so if you're in California and frustrated with other companies, you might want to try Aetna.

I so wish that I had the option of getting insurance through Aetna. Cigna is what is offered through my work--that and United Health Care. (very sad face--I so wish that I had Aetna)

That's a good point, Erin, I worry about that too, and I don't know what to do about it either.