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Just Where Does The Disparity Between BRCA1/2 And Lynch Syndrome Exist? You Would Be Surprised

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Long addressed has been the existing disparity between the funding, resources and commitment afforded Americans sustaining BRCA 1/2 gene mutations and those with Lynch syndrome.  What we haven't known is from where the dispartity stems.  This is part of a series of articles by LSI, searching into the roots of disparity and bias in the arena of genetics.  Where are its roots?

We have seen it existing in media awareness, federal funding, congressional legislation, insurance coverage, education of physicians by medical associations and care and treatment within major cancer hospitals.  LSI is studying where this disparity exists the most, so it can be resolved and our families can live.  

 

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To determine the extent of the disparity in media awareness between the hereditary cancer conditions involving BRCA1/2 mutated genes which affect primarily women and the Lynch syndrome hereditary cancer mutated gene condition, LSI conducted a web search.  This search began with studying the documented internet media items of the major cancer institutions and two very large organizations, a national organization which strictly addresses cancer and the other which strictly addresses a professional organization responsible for education, awareness and diagnosis of those with genetic conditions.  This search involved using the Google search engine and entering the name of the institution or organization and the search term BRCA 1/2 or the search term Lynch syndrome.  No specific dates were entered, therefore the dates of dissemination would historically go back as far as all other items warehoused upon the internet.  Some information was reflected several times by several sources,(in example, information about a specific clinical study results) indicating strong PR efforts by the institution.

A clear bias toward enhanced education, public awareness, research and care for those with hereditary breast cancer was discovered in all major cancer centers and with both major organizations.  This institutional priority of genetic public awareness most likely affects the level of genetic testing and the specific conditions for that genetic testing, as well as sends a message to the staff members and the public of the priorities of the conditions ideal to be genetically tested. 

Further, it is believed it strongly affects physician education and sends a message the institution does not consider Lynch syndrome diagnosis a priority.  Therefore, it contributes toward not providing those with hereditary gastroenterological and gynecological conditions the necessary testing and care to sustain good health for themselves and their families.

It is our belief this may be a root cause of the belief of medical and public health professionals that Lynch syndrome is a rare condition.  (One of every 440 persons are thought to be affected by Lynch syndrome, making it anything but rare.)  It is most likely this creates a contribution in Lynch syndrome being so very seriously underdiagnosed.

The articles reflect the public awareness of each syndrome (BRCA 1/2 or Lynch Syndrome) and the media efforts to educate or create public awareness.  The figures presented indicate a clear bias toward the dissemination of information for BRCA1/2, opposed to that of the Lynch syndrome, though both are almost equal in numbers of affected persons.

Interesting to note, these figures appear to be reflective of  the levels of diagnoses of the two syndromes. This may provide a good explanation of why Lynch syndrome is so underdiagnosed, while so many with BRCA 1/2 have been diagnosed. It may be a strong clue as to why physicians know little about Lynch syndrome, why it is not a priority to most organizations and why our families are being left vulnerable to the threat of cancer.

Studies are needed to determine why such a large disparity would exist. We need to understand why they exist even to the levels of professional organizations of medical professionals, genetics professionals (who are charged with the responsibility of education) and major cancer organizations.

We will be looking further into the funding of clinical studies for hereditary breast cancer and those for Lynch syndrome, as well as delve into the political aspects of legislation, what legislative measures has been effected and whether any disparities which may have improved quality of life for those with hereditary breast cancer and/or Lynch syndrome exist.

Finally, we will look at whether or not there is a strong influence, at a national level for funding for one condition, without taking into consideration, the other, and the effect it may have upon lives of those with the inherited conditions. 

The big question for those affected by Lynch syndrome is why they are not considered every bit as important as those with hereditary breast cancers by medical providers, even at the level of our major cancer institutions?

Make a call...not to your doctor, but to the heads of these institutions.  Give them the statistics and ask  the tough question---why don't you care for us, as equally as you care for those with hereditary breast cancer?  Why don't you help us live?

 

INSTITUTION/ASSOCIATION

BRCA 1 AND 2

LYNCH SYNDROME

 

 

 

James Cancer Center

11,800,000

206,000

Cleveland Clinic

320,000

8,130

Moffitt

212,000

113,000

City of Hope

250,000

14,100

Sloan Kettering

31,500

9,000

Huntsman

12,500,000

98,300

Fred Hutchinson

240,000

21,500

Baylor

20,900,000

115,000

Duke University

441,000

108,000

Vanderbilt University

18,500,000

45,300

UCLA

18,000,000

122,000

UCSF

9,550,000

23,010

Dana Farber

421,000

46,800

MD Anderson

75,200

18,300

Mayo Clinic

1,110,000

24,800

University of Texas SW

319,000

28,600

Johns Hopkins

200,000,000

161,000

Yale

25,700,000

155,000

National Society of Genetic Counselors

67,000

8,380

American Cancer Society

166,000

41,000

                                                       

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