There exists a certain insurance company called Blue Cross Blue Shield of Illinois. Reading the parent company's mission statement should serve as a prophetic fore-warning; a lot of mumbo-jumbo about strengthening the company's brand and providing support for the the participatory companies. Not one word having to do with patients. Not one mention of "care," "compassion," or "well-being." Quite curious! Blue Cross Blue Shield of Illinois has recently undertaken a "project" which should go down in the annals of healthcare infamy and raise the ire of those across the spectrum of rare diseases and not-so-rare diseases alike.
BCBSI has notified CVID patients that it is ordering them to cease and desist IVIg Therapy, the infusion of life-saving antibodies, for a period of four months. This stoppage is meant to force the immune-system of each patient to deconstruct to the lowest possible levels of immunity, making said patients "ticking time-bombs" for which exposure to the most innocuous pathogens and microbes could result in life-threatening infections, prolonged hospitalization, or as is the case far-too often with CVID and PID patients: death! All this, so BCBSI can force the patients, in a twisted revisionist manner, to re-prove that they are indeed sick enough to be receiving treatment. It should be noted that each patient has already qualified and met diagnostic criteria for treatment.
Perhaps an analogy is in order. A woman is undergoing chemotherapy and radiation treatment for breast cancer. She is currently in the eight week of her 12-week program. Could you imagine her insurance company asking her and other women like her to stop treatment to re-prove that they do in fact have breast cancer?
A movement is afoot among certain immunologists to rewrite the diagnostic criteria for Common Variable Immunodeficiency. The body of "research" as a whole indicates a "tightening of the screws" of the diagnostic procedure, making it harder and harder for patients to qualify for life-saving Immunoglobulin Replacement Therapy. Granted, we are speaking about very expensive therapy which can cost upwards of $5,000 per month. One only need peruse one of the recent "research" articles Treatment of hypogammaglobulinemia in adults: A scoring system to guide decisions on immunoglobulin replacement to see that a virtual "laundry-list" has been proposed for diagnosticians. This article serves as a microcosm of how the individual "patient" is being removed from "patient-centered" medicine. Rather than allowing the PID professional, the immunologist, to exercise his or her common-sense in deciding what is best for the patient, thus giving a certain degree of expertise-based leverage, the ill patient, oftentimes hanging in the balance between life and death, has been reduced to a checklist and mathematical algorithm.
Pay particular attention to one paragraph of the article: "Of these 65 subjects, 10 had previously been started on intravenous immunoglobulin and were seen in consultation for a second opinion; preimmunoglobulin infusion data were collected. Each subject’s laboratory, clinical, and total cumulative (laboratory plus clinical) scores were tabulated. Subjects were divided into 2 groups for further analysis: those for whom immunoglobulin therapy was recommended and those for whom it was not." Yes, there it is, in black and white, they took ten previously diagnosed patients, re-diagnosed them according to the new criteria, and recommended taking those who didn't conform to the algorithm off of IVIG!
Think it can't happen to you and me? All it takes is a new formula, an immunologist who is pressured to be a conformist rather than a free-thinker, and we're off of our treatment! It's why BCBSI is doing what it's doing, and why other insurance companies are salivating at the prospect of trimming away patients like us. They know that in the current atmosphere a patient's previous diagnosis can be overturned without objection from the medical community, they see their opportunity, and like sharks, they smell blood in the water. The precedence is being set whereby any of us can now be ordered to stop IVIg for months and return for re-evaluation and/or re-diagnosis.
Many, too many, patients in need of life-sustaining and life-saving treatment, will quite simply be relegated to the graveyard. Many current CVID patients, diagnosed in previous years by competent professionals, will simply not meet the revisionist criteria. Approved in the past by doctors exercising sound judgement who realized that without diagnosis and treatment intervention, they would not survive, they will now potentially be facing the chopping-block. Envision a scenario in which patients on life-saving IVIg for the past 5, 10, 20 years or more are suddenly "undiagnosed" and sent on their merry way without treatment due to the decision of an algorithm. Sound far-fetched? It's on the verge of happening at BCBSI as, in a matter of months, we will see which past diagnosees have been rejected and denied further treatment.
One only need look at the various CVID Facebook groups to read the desperate plights of those so obviously in need of treatment, those who are being refused by immunologists, those who would previously have been put on IVIg, to see the extent of the dilemma. A CVID diagnosis and IVIg are being withheld for those with astronomically low levels of IgG antibodies who suffer ten, twelve, fifteen serious infections per-year, simply because the Godly algorithm says "No." Can you imagine those previously diagnosed patients joining their ranks?
Back to the statement that "Nothing happens in a vacuum." Revisionist CVID Diagnostics are providing ample incentive for one insurance company, BCBSI, to endanger the lives of patients whose interests it is sworn to protect - even if its mission statement says otherwise. The cycle is feeding into itself. Which insurance company or companies might join the fray tomorrow, putting bottom-line over the lives of invisible patients? It could be your company, it could be all of our companies.
As a Rare Disease advocate, I peruse no less than fifty research articles in a given day. From Rett's Syndrome to Batten's, from the Trisomy disorders to Proteus Syndrome, and all points in between. I have yet to see another Rare Disease which is being scrutinized in such a manner, a manner whose sole intent can only be to "trim" patient rosters and save money at the cost of lives. Trimmed as new patients by immunologists, trimmed as existing patients by insurance companies. The atmosphere and outlook have becoming frightening.
In a given year there are an average of eight to ten hard-research articles pertaining to CVID. I would suggest that researchers turn their efforts to improving the lives of those with this rare genetic disorder which shaves decades off of the average lifespan and away from making the lives of those with this unfortunate illness more and more difficult. The 2014 CIS Primary Immune Deficiency Diseases North American Conference is scheduled to take place from April 10th-13th in Baltimore, Maryland. I publicly appeal to the conference organizers to place this worrying and dangerous subject on your agenda.
I would additionally ask insurance companies such as BCBSI to turn your attention to the mandate of insuring and cease and desist from overstepping that which you have been tasked to do. And, pardon my language Blue Cross and Blue Shield: change your fucking mission statement in the process!
The above is happening to one Rare Disease. Let it serve as a warning to the approximately 7,000 others. If it can happen to one, it could happen to others. It can happen to yours! Be it CVID, Hirschsprung's Disease, Pallister W Syndrome, Camurati-Engelmann Disease, or whatever, it could be your phone that rings tomorrow. "We have new diagnostic criteria. Your diagnosis and treatments (or those of your child's) have been cancelled. Let's start the whole process again. I understand your little daughter might die without her medication Ma'am, take heed, however, it'll only take four months to decide."
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