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Seems they are, beginning with those who may be facing a ticking clock.


Welcome to the genetic testing wars…we saw it coming, we feared it would occur, we tossed our two cents worth into the ring, and now that its here, it looks as though its going to get worse before it gets better.


This week, CIGNA is enforcing its new policy of requiring individuals who are at high risk for cancers to not only see their physician for a referral to a genetic counselor in order to detect hereditary colorectal cancer conditions (and pay another co-pay, to boot) before getting a genetic test (which requires another co-pay), but is also requiring the patient have yet another mandatory appointment with a genetic counselor (yep, you got it, another co-pay) before being advised of the results of the test.


Just when it seems like it can’t get any worse, it does!  Especially if one is pending a cancer... and has to make a surgical decision based upon the results of a genetic test.  Can you imagine going to your surgeon and being told he cannot order the test for you so you can make determination as to what surgery you will have or what body organs should be removed, or even be able to order that surgery until you call your insurance company, who will refer you to their contracted, telephone genetic counselor, who will determine whether or not that physician should order that test for you? 


Can you imagine the horrible anxiety of waiting during that time?


Can you imagine not being able to get the information on what treatment you should have following the surgery, unless you see a genetic counselor who will explain to you the risks of having a genetic test?  (Like the risks are far more important than treating a cancer?)


CIGNA has publicly stated the weight of the genetic counselor would weigh heavily than that of  the physician, and all tests would be reviewed by one of CIGNA’S physicians to determine if, in fact, the physician's prescription will stand. This is deplorable as neither have the medical experience of the physicians.  It feeds into a deterioration of health care and is a disservice to those with hereditary cancers.  Making it even uglier, the counselor is paid by CIGNA, contracted by CIGNA and, receiving its bread and butter from CIGNA would have a conflict of interest in providing healthcare recommendations.


This isn’t about patients or patient care or what is best for the patient.  It’s about money. It’s about the greed of the telephonic, genetic counseling corporation contracted by CIGNA and the greed of the insurance company.  It is not about seeing people you trust, your local genetic counselor, or your physician within your doctor’s office.  It is not about relationships with those who have a history of keeping you and your family safe and healthy from a life threatening condition.  And it certainly isn’t about privacy, because everything given to CIGNA, is reported to the National Life Insurance Database…you see, they are a life insurance company too. 


You can bet not only will you will receive a bill for four times the amount charged the average person for life insurance premiums after having a health matter reimbursed by CIGNA health insurances, but members of your direct and extended family, may as well---especially after the insurance company's contracted genetic counselor takes that "extensive" family history and discusses the past cancers with those family members, as genetic counselors sometimes do, documenting it thoroughly, and giving a copy to the insurance companies.


Genetic testing is supposed to be about protecting families and saving lives. Genetic counseling, when mandated, creates stress and anxiety.  When sought and desired, it brings comfort.


CIGNA is right. Their policy does save costs—for CIGNA, while increasing health care costs for the patient. because when it is mandated, it is a barrier to testing.  Only 14% to 48% of patients, referred to genetic testing, comply with mandated counseling. You can bet your sweet bippy CIGNA knows that.  Their decision is not about the patient. They could care less what we think.  Nobody, but their "money man," in charge of keeping costs down, has spoken with us.


Dr. Finley, is adamant about his stance, stating, “Though you don’t know it yet, it will be good for you and good for patients.”  He certainly had no interest in hearing what WE feel.  There was no sense in speaking with him, he had his mind made up and disallowed us to escalate to the next level with our position, advising CIGNA has given him the authority to permit or deny individuals to escalate up the ladder.  You can again bet your sweet bippy we were NOT escalated and were left to debate this issue in a public forum.


We have a news flash for Dr. Finley and those "bosses" of his who don't have a stomach for personally speaking with patients, insureds and those with genetic conditions…all patients should have a choice and a say in the administration of their medical care, especially in America.  This isn’t 1939 Germany.  There is no room for paternalism in today’s medical society.  Seriously, how could any ethical individual even consider this, without asking patients whether or not it would be a benefit for them? Where is the voice of the patient within CIGNA's scheme?  CIGNA, pull you head out of the sand and step into the 21st Century, into a world where everyone is deemed equal and should be allowed a voice. 


This isn’t about patients. Its all about CIGNA wanting to save money and reduce costs by singling out three classes of individuals with genetic cancer conditions of 700,000 different genetic conditions for a different and a disparate treatment.  THIS, is genetic discrimination, at its ugliest, and it is how CIGNA intends to ration healthcare.


This is about InformedDNA, a commercial genetic testing company, which in June, issued a public statement that they believed legislation should be initiated requiring genetic testing of everyone who may have a hereditary cancer syndrome. It was about money, not concern for the patient. It was part of what motivated InformedDNA to strongly endorse dropping patents, despite the face, the pharmaceutical companies were the only persons educating medical physicians.  It has nothing to do with patients, and its actions seems to violate the ethics of the genetic counseling profession.


For InformedDNA, it's about cashing in on the “genetics game,” and making a hefty profit. Once strong advocates and high rolling contributors to the Gay Community calling for antidiscrimination laws and equal rights and the elimination of mandatory counseling, prior to HIV testing, it is amazing they were the first to advocate to treat those with hereditary cancers differently.


Requiring genetic counseling, prior to genetic testing, will only put Lynch syndrome back to year 2009, when 30,000 were diagnosed, at an average of ten to twenty per year in major cancer centers. This is deplorable, when when one in every 370-440 people have Lynch syndrome and less than 10% are diagnosed. It indicates genetic counseling to be a barrier to testing when mandated. But again, you can bet your sweet bippy (and have little chance of losing it) because that's what they are banking on. As stated, they are looking at saving money. Their's is a creative way of rationing healthcare.  If you make it difficult for the patient to get something by creating annoyances and multiple hurdles to leap, most will simply give up.  The problem is, when our family members give up, they die.


With panelized tests now entering the market offering testing for 15 to 36 different hereditary conditions with one test, there is no “wrong test.”  Not only are the odds good a diagnosis will be made, but the odds are great that other conditions may be ruled out---that is good medicine.


CIGNA knows this, as well. With new technology, there is no “difficult test.” There is simply a test which is the same cost of an MRI, which is given every day, of which physicians are capable of performing and treating, especially oncology experts. The insurance company doesn’t want to diagnose patients, they want to make it difficult enough for them, that the patients will NOT get diagnosed.


Why? Because private insured patients only last with an insurer for six years. It is the average turnover time. When these tests come out, they don’t want to pay for them. They have no long termed bond with the insured. They want to wait for individuals to get a colorectal cancer and use MSH-IHC test which takes much longer to diagnose, but is much less expensive. They want to take the risks of having one person in a family get a cancer and essentially become a sacrificial lamb, playing Russian Roulette with cancer survival, so others in that family can live.


There is no excuse for MSI-IHC testing for those with colorectal cancers, when a test, which is much quicker and can allow individuals to make surgical decisions is readily available.  These new tests result in more lives saved and more money saved in the future.


It is about those who don't desire testing jumping hurdles and racing through hoops, spending three days of their lives, engaged with individuals who will determine whether or not they should receive a genetic test for cancers, before they will be allowed to take the test. For the patient it is an expensive game and an incredible inconvenience which will increase anxiety. It is a form of discrimination, singling them out from others with hereditary cancers, and

insinuating they are not capable of making their own choices. It puts them into a different class…a lower class and singles them out as “being different.”


It is about CIGNA putting out the message that their physicians are incapable of caring for them, when any blithering idiot can count to three and determine if someone is at risk for Lynch syndrome.  The One, Two, Three Rule dictates the guidelines for germline testing for Lynch syndrome....Three persons in a family with a Lynch syndrome cancer, two of which are directly related to the third and one under the age of 50.  The criteria for germline testing is so easy, even a child could do it. It isn't tough, especially since most physicians, like genetic counselors,  have four fingers and one thumb on each hand.  Whatever is Finley thinking?  There are many excellent physicians who are capable of testing individuals for hereditary conditions.  They are the ones who have dramatically increased genetic testing and raised the red flags, which brought InformedDNA running to the profit trough.


CIGNA's policy removes any and all choice over the needs or desires of the patient. It forces them to discuss sensitive family issues with strangers, which will be documented on insurance databases. It requires information about family members which will be submitted to the insurance company.


The issue isn't about genetic counselors or the value of genetic counselors, its about the convenience of the patients. Genetic counseling is a wonderful resource.  For many, its invaluable to sit across from a genetic counselor, have eye to eye contact and feel the empathy and compassion.  The CIGNA plan doesn't offer that.  It offers their own contracted genetic counseling corporation, which is reliant on them for their livelihood and which is an incredible conflict of interest and probable violation of the Genetic Counselor Code of Ethics.


This is about a flipping phone service where a person has to reveal intimate details about their familyto a stranger so he/she and their family members can get a life saving test...and about a stranger who is documenting it all, to put into a National Life Insurance Database.


Finally, it interferes with the doctor-patient relationship. The physician needs to know about Lynch syndrome to make certain the patient is managed. The patient and the physician need that bond with one another.  Their relationship may be life long.  It may last the entire career of the physician or the entire life of the patient...far longer than that voice on the phone, which is likely an intern or a recently graduated student.


CIGNA shouldn’t be making the testing process uncomfortable and difficult on patients.  They should be making it as easy as possible for a population such as ours, and especially since we have a LOT of battles and challenges, not only with life threatening conditions with us, but also with our families.  They should care about their insureds, not harass them or take advantage of them.  The extremely low level of sensitivity is appalling. 


Bottom line is everyone, no matter who they are, should have a choice regarding their healthcare and should be able to see an independent genetic counselor, if they so desire.  They should not be required to expend four days involved with appointments, and lose over $500 in costs of lost wages, co-pays, daycare, etc., on top of their payments for insurance premiums, to simply to get a simple, blood or saliva test to determine if they have an altered mismatch repair gene.

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