Posts Tagged ‘insurance’

Redefining Success in Transplantation

June 27th, 2010

Sixteen years ago this September, I was blessed to receive a liver transplant. Having been diagnosed with two auto-immune conditions as a teen, I was more than receptive to discussions with my transplant team of surgeons, physicians, and nurses on how to suppress my immune system so that I would not reject the organ.  Only recently have I realized that something was missing from that discussion.

With the five year patient survival rates for liver transplants at approximately 70%, depending on initial diagnosis, most recipients can expect to recover and return to work, school families – LIFE.  However, the longterm consequences of overimmunosuppression are seldom discussed, except for increased susceptibility to infections and increased risk of cancer.  After talks with my orthopedist about my diagnosis of osteoporosis, my primary care physician about a rise in my creatinine, and alerts about implications of immunosuppression on hypertension and cardiovascular risk, I have come to better appreciate that harmonizing the immune system rather than knocking it out should be the goal of post-transplant management.

Although approaches and protocols certainly differ by transplant center and even by transplant team, my sense is that the prevailing philosophy is still to prescribe as much immunosuppression as the individual will bear to preserve the organ.  I would like to argue that the goal of transplantation today should be to balance and optimize the individual’s immune system for graft survival and long term optimal health.

The tools most transplant centers use to monitor and manage immunosuppression are, for the most part, blunt instruments that measure levels of immunosuppressive medication in the blood or damage to organs.  I have recently been tested using an immune system function assay called ImmuKnow made by Cylex  ( and found that despite therapeutic levels of immunosuppressive medication (I take Prograf and Imuran) my immune system is still highly active.  This empowered me to push back on my transplant hepatologist’s recommendation to reduce my immunosuppression further. We were able to have a discussion based on my personal immune system response and look for other ways to ameliorate some of my symptoms in a way that does not expose me to increased risk of rejection.

I’ve been surprised to find out that although there is this FDA-cleared test that gives such useful information to guide therapy, supported by more than 120 studies and 200 publications, most transplant centers haven’t yet adopted it and few other patients know about it.  Although my insurance covers the test (why not, compared to the cost of my medication or unthinkable, another transplant) some insurance companies, have denied coverage or are in the process of making that decision.  If you’ve used ImmuKnow or would like to have access to it in the future consider contacting the following fine insurance executives:

BCBS Patients in PA should send comments to:

Virginia Calega, MD

Highmark Blue Shield

Medical Management and Policy

125th Ave Suite P4105

Pittsburgh, PA 15222

Phone: (412) 544-7000

Assistant: Marcine Benton

Ext: 42640

Subject: Cellular Function Assay

Policy Number: Z-24 Miscellaneous Services

Effective 2/15/10 – Highmark BCBS , general policy bulletin – lists 86352 (and a number of codes) as Investigational (no documentation of review of specific medical literature, clinical utility or patient impacted has been noted in the policy bulletin)

BCBS Patients in Texas should send comments to:

Allan Chernov, MD

Blue Cross Blue Shield of Texas

Medical Director

1001 East Lookout Dr

Suite B – 10.408

Richardson, TX 75082


Phone: (972) 766-1149

Assistant :

Holly Rock: 972-766-2011

Subject: Immune Cell Function Assay in Solid Organ Transplantation

Policy #:  MED207.147

Effective: 1/1/10 – BCBS Texas is considered experimental, investigational and unproven  (need to hear from patients about real world experience and how this is important to their quality of life , care and treatment)

BCBS Patients in Illinois should send comments to:

Kim Reed, MD

Blue Cross and Blue Shield of Illinois

Medical Director

300 East Randolph Street

Chicago, Illinois  60601


Phone: (312) 653-5487

Subject: Immune Cell Function Assay in Solid Organ Transplantation

Policy #:  MED207.147

Effective: 1/1/10 – BCBS Illinois is considered experimental, investigational and unproven  (need to hear from patients about real world experience and how this is important to their quality of life , care and treatment)

Profiles in Courage 2010 Edition

March 23rd, 2010

I remember reading President John F. Kennedy’s Profiles in Courage when I was a girl and being inspired by the recounting of Senators standing up to colleagues and constituents alike to speak out and vote on principle for what they thought was in the highest interest of the nation. Courage was the word that has most frequently come to mind with the passage of the Patient Protection and Affordable Care Act, better known and the Health Reform Bill, Sunday night in the House of Representatives. Despite levels of vitriol not seen since the Civil Rights Movement of the 1960s, complete with shouting, spitting, and name-calling outside and inside the Chamber, Democratic members of Congress came together to lead. With this bill the administration made a statement about who we are as a nation, as a people, a nation that cares and supports all its citizens, a nation that understands that a foundation of health is necessary for enjoyment of all our constitutional rights and the many privileges of living and working in this great country, a nation that can find money for peace as well as war.

Some say that this is a government take-over of healthcare. It is not. Insurance companies, drug manufacturers, and hospitals are still standing and benefit from more insured. Small businesses are key beneficiaries and there will greater opportunities for job mobility without fear of losing and never regaining insurance coverage one can afford. Patients benefit. Almost all of us will have a “pre-existing condition” if we live long enough.

Some say it costs too much. How much is too much for health? Ralph Waldo Emerson once said that “The first wealth is health”. We would do well to remember that. Do we need to do more to reduce (not just shift) costs of healthcare while maintaining/improving quality? Yes. However, one bill is not required to do all things.
If the purpose of government in a capitalistic, constitutional democracy is to do collectively what we cannot do individually to ensure a strong, stable and prosperous country then this Democratic Congress has done its job. They have my vote not only in the next election, but for the next edition of Profiles in Courage.

A Patient’s Principles for Healthcare Reform

September 7th, 2009

If we truly wanted to create a patient-centric healthcare system – not insurer-centric, employer-centric, or even physician-centric – I believe that we need to do the following:
1. Redefine healthcare to include a holistic, 360 degree view of health from wellness, to prevention, diagnosis, treatment, rehabilitation, and hopefully back to wellness.
2. Align a payment system, not necessarily, but possibly an insurance system, to support those elements along this 360 degree paradigm that provide actual value, i.e. improve patient outcomes.
3. Provide transparency in pricing. Costs, potential cost-savings, and how those costs were calculated should all be included. Cost and price can be two different things. The government declaring that they need to cut physician payments in Medicare, for example, does not lower the costs of physicians delivering care.
4. Widely disseminate consumer education and patient decision support tools to facilitate informed evaluation of health and medical options.
5. Universal mandatory participation in some type of health insurance or financing mechanism coupled with guaranteed issue. The system should put individual coverage on an even playing field with employer coverage and drop barriers to multi-state or other groupings.
I believe in a system that is consumer-directed, where patients are able to accurately estimate the amount of financial risk they can tolerate for health expenses and can buy reasonably priced coverage for services above that personal level of risk. I believe that patients should have their choice of physicians and be supported and empowered to engage in appropriate self-management by members of their healthcare team. I believe that the most important decisions we make in healthcare involve what we eat, how much we move, choosing not to smoke, and other lifestyle choices, but when our genes, fate, or attempt to stay forever young fail us, the availability of quality medical care that does not bankrupt us in the best interest of all.