Ivig therapy and health insurance

[Rachat35]

Hello everyone. I am in watch & wait year 7 with Cll. I hav had low IGG all along, now markedly low.,154 sine August 2020. I had bloodwork repeated in December '20. Still low, Suggested to start Ivig therapy. I was scheduled for my first treatment in January. Denied by health insurance. Since then, 2 blood tests to prove my cause, subclasses of IGGs, all low and. titer to Pneumococcal vaccine. I received the series 2 yrs ago, all titers low as though I never received the vaccine. I have chronic congestion and sinusitis whuch I live with and don't readily run to the Dr. for. Still waiting on an appeal, now 6 weeks out from original treatment. I am so angry, upset and feel helpless with this. My oncologist office state that they are fighting for my cause. Did anyone else experience this and what did you do? Looking for help please...thank you.

[Smith123456]

denied-why?. they usually send a letter to you also. i'd call and ask. sometimes doctor does not give correct info. You need more info even if you have to call insurer yourself.

[SofiaDeo]

Hmmmmm without knowing the specific language of your insurance policy, regarding authorized DRG's for use, and their (often highly specific) appeal process, it's hard to say what your next step is, but Smith123456 is right, get a letter or exact reason why you were denied. I agree it's the best place to start.

[cllady01 Former Volunteer]

Rachat, it is often the case with insurance that the Drs or hospital have a struggle getting the insurance company to agree to terms. As suggested, your Drs. crew are doing some negotiating, but it would not hurt and might help for you to do as others have suggested and write a letter yourself in regard to your need.

If you get a monthly or quarterly insurance report (I am on medicare and get them regularly) there may be instructions as to the way to do a grievance letter. If your insurance is through your work, I would be asking the pertinent party (Humane Resources--if there is such an office/or person) to help with the request.

As I typed that I realized you may not have consulted with your employer in regard to your CLL, because of the possible ramifications--many have withheld that diagnosis until they have had to do so to get treatment. If you haven't informed them, get a letter from your Dr. with a certification of your abilities to continue your job--all that, is if this is the case.

Please let us know how things go. --there are others on this site who have had difficulties as you are having. Perhaps someone will step up to help.---

[cllady01 Former Volunteer]

Here is a list of addresses for State Insurance Commissioners and a brief explanation before the list about how a Commissioner can help.

Be sure to click the "continue" at bottom of list to get all the states listed (if yours isn't in the early section of the list.

I hope this helps.

thebalance.com/state-insura...

[Rachat35 in reply to cllady01]

Thank you kindly. I will definitely contact the state if this doesn't get resolved soon. I will not give in to this.

[SofiaDeo in reply to Rachat35]

Double check with the insurance company & doctor's office first, to make sure the correct CPT's/DRG's are being used. Since many CLL patients do not need treatment, the difference between the standard "CLL" DRG/CPT code and a "CLL, high risk" DRG/CPT code, or "CLL of B-cell type not having achieved remission" (mine on last hospital admission) could be holding you up. A number off, and they refuse it. And your doctor's office might not realize that number was wrong. Possibly, there might also be a need for a DRG/CPT related to low serum protein/IgG levels that warrants treatment, in there. I had issues with a disability insurance company, until I got properly placed in the high risk/needs treatment category.

[BeckyLUSA]

I presume you are in the US? Probably one of the issues is that you don’t “go running to the doctor with your sinusitis and chronic infections” as you said. Many people have very low IgG but don’t get IVIG because they don’t get sick. It is not just the number that counts but your history of infections. My IgG numbers were only in the low 400’s but my insurance company approved. I had had 6 documented sinus infections within the previous year and had to have multiple antibiotics with each. Also, my local hematologist/oncologist tried to get it and it was denied. I subsequently (2mo later) went to a CLL specialist and he got it approved first try. This was in 2016.

I get IVIG every 6 weeks and starting at the end of the 5th week, I have to be very careful or I will catch something. Insurance requires that my IgG levels be tested every time I get IVIG. If it gets above a certain level, they will not approve it for the next time. So if I were to try and get it every 4 weeks, my number would be too high. 6 weeks is the “sweet spot” for me, with the last week being the most dangerous. I don’t get around people much during the week before I get my infusion.

If my numbers were to be too high, then it would not be approved again and the process would have to start over. I would not be approved again until I got seriously ill.

Good luck getting it sorted out! If you are not seeing a CLL specialist and have access to one I would highly recommend doing so. When I questioned my specialist about how he got it approved so quickly he said that the insurance companies know that if a specialist is requesting it, the person probably really needs it.

BeckyL USA

[Mrsminton]

APPEAL, APPEAL, APPEAL. I am the practice administrator for my husband's primary care practice, and you need to ask your doctor to appeal, and if denied, appeal again, final straw is for your doctor to ask to speak directly with the insurance company's medical director to explain why IVIG is a medical necessity for you. I receive IVIG every 4 weeks--initially due to chronic sinus infection that lasted 3-4 months; we went to every 6 weeks, and I got sick with a liver infection and pneumonia, so we went back to every 4 weeks at an increased dosage. Good luck and keep pushing on the insurance company!

[Rachat35 in reply to Mrsminton]

Thank you kindly for all of your support. Today I was finally APPROVED for therapy! I am so grateful for this. I was so discouraged and angry to name a few of the emotions that I experienced. My Dr. and his staff fought for me and I am so blessed! I will begin therapy soon. To all of you. who may go through this, don't give up. Keep strong, keep the faith. We only go around once in this lifetime. We need to make it the best we can! God bless all!

[cllady01 Former Volunteer in reply to Rachat35]

Good on you and may the therapy be exactly what you need. I hope you are not in one of the states, as I am, that are ice/snow/freezing temps without end right now.

[Rachat35 in reply to cllady01]

No, thankfully I am in Florida. Beautiful weather here. Take care and stay warm.