[CIS PIDD] [cis-pidd] Profound panhypogammaglobulinemia - To treat or not to treat and how?

[JAMES GERN]

Troy's approach has worked well for me - invoke personal responsibility!
Jim
James E. Gern MD
Professor, Departments of Pediatrics and Medicine
Divisions of Allergy and Immunology
Director, Allergy and Immunology Fellowship Training Program
University of Wisconsin School of Medicine and Public Health
K4/918 CSC
600 Highland Avenue
Madison WI  53792-9988
Phone (608) 263-6201
Fax (608) 265-2207
gern at medicine.wisc.edu

On Oct 30, 2013, at 10:45 AM, Kate Sullivan <sullivak at mail.med.upenn.edu> wrote:


> Similarly, I've only ever been denied once but the amount of time it takes has ratcheted up significantly.  This is really a sorry state of affairs.  I'm not sure advocacy can battle big insurance companies but I think we should all emulate Troy and find a way to harness facebook to embarrass the companies into better behavior.

> 

> Kate Sullivan

> Sent from my iPhone

> 

> On Oct 30, 2013, at 8:33 AM, "Torgerson, Troy" <troy.torgerson at seattlechildrens.org> wrote:

> 

>> Soheil,

>> 

>> I would echo Marc's comments and add that when I talk to the medical director, the first thing that I do is to ask their name and title, then we have the discussion about the case.  If they still refuse to cover it, I politely tell them thank you for discussing the case and that I will be writing a note in the patient's permanent medical record detailing our conversation and recording their name and title and the fact that they were the one that denied this "standard of care" therapy so when the patient dies of an overwhelming infection, they can bear the liability and not me.  

>> 

>> They almost always reconsider their decision.  If they don't, I write the note.

>> 

>> Best,

>> T

>> 

>> Troy R. Torgerson, MD PhD

>> Assistant Professor, Pediatric Immunology/Rheumatology

>> Director, Immunology Diagnostic Laboratory (IDL)

>> University of Washington

>> Seattle Children's Research Institute

>> 1900 9th Ave., C9S-7

>> Seattle, WA  98101-1304

>> 

>> Tel:  (206) 987-7317

>> Fax:  (206) 987-7310

>> Email:  troy.torgerson at seattlechildrens.org

>> 

>> Sent from my iPhone

>> 

>> On Oct 30, 2013, at 7:51 AM, "Riedl, Marc" <mriedl at ucsd.edu> wrote:

>> 

>>> Soheil,

>>> 

>>> As mentioned by others, I do everything I can to get the Medical Director on the phone.  This "peer-to-peer" conversation is typically within your right to arrange (though they will try to delay and dodge it), but in my experience this is almost always successful in securing the proper treatment.  As you suggested, these Medical Directors typically have zero experience or expertise in PID and when pushed directly on the phone will admit this and capitulate.  I also use stronger language:  this is standard-of-care for the condition and the patient is at risk for fatal sepsis (I use the word death) for which the insurance company will be liable given that you are providing the appropriate medical recommendations.

>>> 

>>> Best,

>>> 

>>> Marc

>>> 

>>> Marc Riedl, MD, MS

>>> Associate Professor of Medicine

>>> Division of Rheumatology, Allergy & Immunology

>>> University of California, San Diego

>>> 9500 Gilman Dr, Mail Code 0732

>>> La Jolla, CA  92093

>>> Tel 858.822.6766  Fax 858.642.3791

>>> 

>>> From: Soheil Chegini <schegini at yahoo.com>

>>> Reply-To: CIS-PIDD <cis-pidd at lists.clinimmsoc.org>

>>> Date: Wednesday, October 30, 2013 7:20 AM

>>> To: CIS-PIDD <cis-pidd at lists.clinimmsoc.org>

>>> Subject: Re: [cis-pidd] Profound panhypogammaglobulinemia - To treat or not to treat and how?

>>> 

>>> Thank you all for your comments and suggestions. I am still struggling to provide my patient with what I believe to be appropriate care and want to ask you again for your input.

>>> 

>>> Unfortunately, Independence Blue Cross sees no urgency to act on this case and my appeal has fallen on deaf ears. I have no way of knowing whether the insurance physician, Dr. Karen White, who deemed this patient is not eligible for IgG supplementation is even qualified to make that determination. The clinical appeals coordinator is a nurse without any immunology background and I have already done what I could to convince her of the necessity. I would like to ask whether I can refer this patient to any entity such as IDF or Jeffrey Modell Foundation that could offer him legal counseling and advice or represent him by flexing its legal muscle to help him get IgG approved. Thank you again for your help and advice.

>>> 

>>> Here is an update on the results of his follow-up lab results:

>>> IgG 136

>>> IgA <4

>>> IgM 2

>>> ABO group: A; reverse type failed to show anti-B

>>> Isohemagglutinins (A1, A2 and B) <1:2

>>> Lymphocyte mitogen and Ag stimulation was normal to PHA, ConA and PWM as well as candida and tetanus.

>>> 

>>> Here is the note I sent to IBC:

>>> 

>>> Kelli Kobb, RN

>>> Clinical Appeals Coordinator

>>> Independence Blue Cross

>>> P.O Box 41820

>>> Philadelphia, PA 19101-1820

>>> Fax: 888-671-5274

>>>  

>>>  

>>> Dear Ms. Kobb,

>>>  

>>> I am writing to appeal your denial of appropriate care to one of my patients, Mr.  , who has profound panhypogammaglobulinemia and requires prophylactic immunoglobulin replacement.

>>>  

>>> I am very concerned about his risk of a catastrophic infection and for that reason applied for authorization to start appropriate treatment with subcutaneous prophylactic immunoglobulin replacement. Unfortunately, this was denied IBC because he has not had a significant infectious history. I have appealed IBC’s initial denial, but I have not received a final decision about my appeal yet. I wonder whether you would have this patient obtain a second opinion by a specialist treating immunodeficiency conditions or provide any ideas about how to proceed in the care if this patient to avert a potentially disastrous outcome that would undoubtedly result in a costly litigation.

>>>  

>>>  

>>> Thank you very much in advance for helping my patient and allowing him to receive state of the art care for this kind of humoral immunodeficiency.

>>>  

>>>  

>>> Sincerely,

>>>  

>>> 

>>> Soheil Chegini, M.D.

>>> 

>>> 

>>> On Monday, October 14, 2013 2:11 AM, Carla Gianelli <gianellicarla at gmail.com> wrote:

>>> Dear Soheil,

>>>  I agree with Mikko that this case looks like IDVC.

>>> Did you rule out Celiac Disease? The serologic test could be negative with IgA isotope so take in count to do it with IgG (anti-tissue transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA). Or if it it still suspect biopsy of the small intestine could be performed to confirm the diagnosis. 

>>> Kind regards,

>>> Carla Gianelli

>>> Clinical Immunology

>>> Hospital Ramón y Cajal.

>>> Madrid. Spain.

>>> 

>>> 

>>> 2013/10/14 Seppänen Mikko <Mikko.Seppanen at hus.fi>

>>> Dear Soheil,

>>>  

>>> I of course agree with all previous comments, and to me Your case looks in all ways like a very typical CVID (or Good's, like said), even by looking at tetanus and diphteria (latter is low) responses.

>>>  

>>> I would as well order (if not yet done, in my opinion should be part of initial workup even before vaccine responses checked): electrophoresis of urine and serum, B12-TC2, (S-MetMal), fS-A-vit, TSH, T4.

>>>  

>>> There is some data on infection risk with this low Igs, check Quinti I et al (the Italian cohort) as well as Oxford cohort (Chapel H and Misbah S among authors), both of which found that IgG around 400-500 is the threshold after which the risk of infection skyrockets...I have, after 17 years of practice, yet to see the patient who - with that low levels - woud not develop a life-threatening infection or die w/o treatment, given a reasonable follow up period. Not all agree with therapy so one "gets" to follow up what happens... I guess most of us share this opinion?

>>>  

>>> And about valproic acid: it could be one of the factors leading to this, but since the patient has already a full-blown CVID phenotype, I am not aware of any reports describing a recovered Ig-production after it has been stopped? is anyone else? IgAD+IgG2D

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