Wow you have me worried as well since I have Blue Cross and blue shield. I have not heard anything from them as of yet, is there a state insurance regulation organization you can contact. I also know that I have a case worker from Anthem. Please keep us informed as to what happens.
Eric

Was your doctor consulted? How is it possible that an insurance company can make a medical decision without consulting your doctor?

That system is very broken.

Perhaps they would like to see if you are able to maintain good levels without your SubQ. Sounds stupid, I know, but insurance company's are like that. I have BCBS too - Horizon to be exact. Makes me worry as well!

They tried it on me when my Wife's company just changed BCBS states the first of this year. Unfortunately for them they didn't know who they were dealing with. I was in the insurance industry, luckily not the health side, so I immediately contacted the State Insurance Commissioners Office. I also had my Wife contact her companies HR department to file a complaint. Not only did they quickly approve and restore my treatments they even back dated coverage to include the treatments that were given before the approval, something the never like to do.

Did your Immunologist test your responses to vaccinations when you were first diagnosed? Did you have a history of repeated infections that did not clear up with the use of standard antibiotic treatment? It's not all about the IgG levels. A supplemented IgG level is no where near as good as a natural level. I can't say that enough. Doctors, patients and the insurance companies need to focus on your natural ability or lack of, to mount a proper and effective response to the pathogens you are exposed to. Obviously, if you have very low IgG levels you're going to have problems. However, you could also have normal levels and more of a "Specific Immune Deficiency" also known as "IgG Subclass Deficiency and Specific Antibody Deficiency".

If you Igg levels were 2 standard deviations below normal and if your immunologist completed the vaccine challenge (2 vaccines given then antibody response checked 3 weeks later) then that is a valid CVID diagnosis. IGG levels are important so as not to confuse CVID diagnosis with Specific Antibody Deficiency, for example, which IVIG is not so clear cut on the treatment.

I am going to also copy and paste something I read recently that may be of great value...If I have time, I will try to find the article for you but at the very least it will reference the proper website:

The AAAAI, the accrediting agency for allergists / immunologists has, equated interrupting IG therapy to malpractice.

I am so sorry you are going through this. It is SO unfortunate that our insurance companies are not allowing the doctors to treat the patient and in turn, may really put us in harms way. Take a deep breath and tackle it tomorrow. Perhaps remind your insurance company that without those treatments you will cost them thousands per week in doctors visits, xrays, ct scans, antibiotics and hospital stays :) Be your own best advocate!!! Please keep us updated.

ew sorry kind of a repeat of PP! Hey great minds think alike!

Another thing that might get you by in the meantime is a program with the manufacturer. For Hizentra in the U.S., if you signed up, you earn credit for the time you were taking it. If you lose your insurance, they supply you with the amount you have credit for.

Where is your specialty pharmacy in the whole mess? They should be on the forefront. What is your exact diagnosis.Did you physician give you a vaccine challenge as past of your diagnosis? ad you registered with your products programs for replacement when you lose insurance? Did you ask you insurance carrier exactly what changed that made you ineligible for treatment? Have you used the IDF emergency appeal letters?

Thank you Mark...always learn something from you...will find those emergency letters from the IDF!

As long as your Immunologist did the proper tests up front, please contact your state's Insurance Commissioner's Office today for assistance.

I won't name the company I used to work for, but if a customer "ever" mentioned contacting their state's insurance commissioner or the media my customer service reps had to immediately transfer or refer the customer to a special customer relations department that handled those types of calls. No insurance company wants to be investigated by an insurance commissioner and they will be if enough complaints are filed against them.

This is like telling a diabetic that they're not going to pay for insulin because maybe you miraculously cured yourself or telling a cancer patient that they're no longer going to pay for chemotherapy because maybe the cancer will just go away by itself. The negative effects on a CVID patient are not as obvious to the uninformed, but the repeated infections we deal with when not properly treated absolutely damage our lungs and other organs and decrease our quality of life and life expectancy. When you contact your insurance commissioner be sure to use similar examples.

I've been told by people that know me that I should probably be a patient's advocate. I find the way many PIDD patients are treated so frustrating maybe someday I will.

Folks,

Sorry that I'm a bit of a rebel or extremist, but I found through out the years that being a lamb or passive just doesn't work. You have to fight for your rights or you will be walked all over by your insurance company.

I wish everyone the best and I hope everyone is having a good day. I really hope youre all "having a great day", but I know I'm happy with even having a good day since my CVID diagnosis 3 years ago.

Before I was diagnosed my Immunologist tested my levels and my reaction to vaccines. To this day he says that I need these infusions more than I realize. I had to miss one week of injections because of this whole mess. I was battling a minor cold/sinus issue last week and now I have a full blown cold coming on strong.
My doctor is amazing he has been on the phone non stop since July 3rd demanding I be put back on. I am hoping to hear from him today. He is expecting to get in contact with the Medical Department at BCBS.
Between my doctor and I we have spoken to 4 different departments at BCBS so they know we are pretty serious about getting this settled and settling it now.
I will let you all know!!

The absolute SAME THING happened with me with Blue Cross/Blue Shield, they WOULD NOT cover me, luckily I was approved for Medi/medi and now I have no problem. The whole sysytem is INSANE!

Today I found out that BCBS has denied me to get anymore infusions " because it doesn't conform to the definition " or something like that. They approved it for months... I'm wondering since our insurance starts over Sept 1 someone didn't look further than to deny them. Have a lot going on, I sure didn't need this. I'm also going to look for the appeal letters. Will let you know what happens... my God is bigger then this problem

I am freaking out here. My doc just told me I have CVID and that I should look it up on webmd and he will refer me to a specialist. Can someone explain this to me like i am a child...please