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Which Way From Here?

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Where do we go from here? While InformedDNA is encouraging genetic counselors and insurance companies to move backward, we are thinking and moving forward.  We have asked to speak with the CEO of Cigna Insurance.  We will let you know when and if an appointment is made.

As well, we should probably take a little jaunt up to Minnesota and try to see if the CEO of United Health Insurance will speak to us regarding the difficulties in getting individuals genetically tested through their company, in some areas of the country. We have had experience with him and know him to advocate for genetic testing.  We will have to see how receptive he will be.

A while back, we spoke to a representative with a health cooperative, in California, which was mandating some individuals drive over a hundred and fifty miles to visit a genetic counselor in order to obtain a lifesaving test, covered by their organization. They stated they wanted to do the testing themselves, however the insurance company was requiring it.

Of course, the individuals didn't go and they didn't get the test either.  Being required to take two days off work, without wages, and another day off to see the doctor who sent him to the genetic counselor, pay the high cost for gas and childcare, parking, fuel and bridge tolls, as well as the co-pays for the two visits and for the lab test, as well as the hotel rooms, the costs for the genetic test for the gene his family would have more than doubled, with him paying the price. At this point, they are considering if perhaps an attorney would be more beneficial in assisting them get a genetic test for Lynch syndrome .  We referred him to an outside doctor who will test him and they will appeal the insurance company's decision, with another attorney standing by.

Since 2009, LSI has been promoting public awareness and educating physicians about Lynch syndrome. It has been effective.  Every day, we hear from individuals who have been tested as a result of our public awareness or education efforts, mostly by physicians with whom our volunteers have met personally and shared information.

We were the first advocacy organization in the U.S. for Lynch syndrome and we have worked hard.  Unlike other nonprofit organization, the majority of  our funding came from our families, some of them emptying savings and retirement accounts to protect families and save lives.  None of it comes from governmental sources and very little from corporate sponsors.  

We are a true nonprofit organization.  Every person involved is a volunteer.  Most pay their own expenses for their local volunteer initiatives to educate medical professionals and create public awareness within the community. Our nationwide volunteers work in over 400 communities per year, educating physicians, sitting in hospital lobbies and working hard to get the word out.  They have opened their hearts and their lives, sharing intimate family deals of their health with the media, and well over a hundred thousand brochures to medical professionals and the general public, so others could live.

This shouldn’t be a patient responsibility, but we have no other choice if we wish for our families to live. It is an immense challenge we have undertaken and one we are passionate about. 

Experts have stated the biggest failure of medical professionals is with Lynch syndrome.  We take it a step is the biggest failure of some medical institutions, teaching institutions, some genetics professionals, genetic counselor organizations, medical schools and medical associations. Being in a position of trust, they have all let the Lynch syndrome community down.  After two decades of failing, we, the patients, working with others, have carried the torch and our volunteers have educated over 100,000 physicians.

We are sitting back pounding our heads on desks, watching as Cigna and InformedDNA try to take us back to a time when nobody was tested...and famiies died.  It didn't work then and won't work now.  A choice is imperative.

We have a lot of work to do, but the first is to make certain those with the Lynch syndrome have a choice in their medical care, they are not treated differently and disparately than others and the persons providing the care do so in a compassionate manner, with sincerity and competence. The Cigna plan doesn't propel us toward the future, it pushes us into the background and into the past.  It distances us from our relationship without medical teams and discourages genetic testing.  America is all about choices, freedom and being equal.  We deserve the same.

We believe our annual management programs should be determined and managed by medical professionals and not genetics professionals, most of whom do not have a cancer clinical background. We believe if we wish to consult with someone, it should be with our medical professionals or experts in cancer, not someone trained solely in risk assessment. A number of genetic counselors, even those working within major cancer centers. have little experience with those with the Lynch syndrome.  In fact, only one percent of those with Lynch syndrome are diagnosed through hospitals and institutions. Most are diagnosed within the community.  It is a dismal failure.

Some of the top research hospitals and HMOs in the United States diagnose an average of only ten to thirty patients a year with Lynch syndrome. With eight to fifteen genetic counselors in each of those institutions, even the most experienced are diagnosing less than five or ten persons a year, from a base of millions in their population centers.

In the meantime, we are seeing physicians, within the community, testing and diagnosing eight to fifteen people per year, with Lynch syndrome--more than diagnosed in your average cancer center.  Many of these physicians are actively looking for these families and taking family histories upon initial visits. Colorectal surgeons are conducting tumor testing to detect those with hereditary cancers. Some have over a dozen patients.  Today, the majority of diagnoses are not being completed by Accredited Genetic Counselors but by these physicians, nurses and physician assistants in the community. It is simply wrong and backward to create a distance between physicians and patients with hereditary concerns and push us back into the 1990s.

We have many challenges ahead, including keeping our physicians and medical teams involved in the detection of Lynch syndrome within our families and the management of our cancers.  If they are not involved in the actual testing process of Lynch syndrome, they will not be referring patients to the genetic counselors and nobody will be diagnosed.  We cannot go back to where we were in 2009 and the ever constant circle of members of our families dying, when only genetic counselors were involved in the process.  It didn’t work.



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