Supplementary: The FH Foundation

The FH Foundation

The FH Foundation echoes the call for using the scoring systems. While not failing to mention genetic testing, the infrastructure for genetic testing is not there, and so the scoring systems remain a cultural fait accompli. The charity informs us,“FH is commonly diagnosed based on clinical criteria; however, there is genetic testing available.”[1]  “However” …?  The selection bias is put front and center and suggested as if it were sufficient. It is not. Genetic testing is here presented as an afterthought … as if something peripheral.  Instead of two steps to a single procedure, these are presented as independent, equally sufficient identification procedures. 

FH foundation

The industry goes a step further and applies the scoring systems to largemedical databases … using an “Algorithm.” [2] But as an epistemological category, an “algorithm” for data-mining characteristicsis synonymous with a “scoring system” based on characteristics. The “algorithms” proposed are based on circumstantial evidence.  And as we saw in the preceding chapters, the swap is inherent in the math resulting from using circumstantial evidence where forensics is required: the pervasive variability of FH characteristics is the poisoned premise within any argument for an algorithm which is based on characteristics shared with other diseases. This is because there is no definitive characteristic for FH … no phenotype.

 “Consequently, the phenotype of FH individuals is highly variable, probably also due to environmental factors and other genetic polymorphisms influencing the clinical outcome of FH.” .… “We here present a large, descriptive study of 1038 Danish FH individuals, who display a wide variety of phenotype regardless of mutation status.” .… “Conclusions: No parameters could decipher mutation status a priori. All individuals fulfilling the FH criteria should therefore be referred in order to facilitate family tracing and genetic counseling.” [3]

find FH patients

The lack of a definitive phenotype for FH is fatal to any merely circumstantial scoring system. It is a truism: lacking a definable FH phenotype one cannot use phenotyping to identify FH. One cannot alter this epistemological type by changing its name from “DLCN” to “Algorithm.” It is still circumstantial. An “algorithm” in this case is just the same scoring system but with greater reach … and advertised to doctors … by a Pharma-funded “charity.” 

The FH Foundation, a charity heavily funded by Pharma, claims: “While every detail of our lifestyle is important – the food we eat, our physical activity, whether we smoke or not – FH always requires medical treatment in addition to that.”

It is not true that FH “always” requires medical treatment, but it is true that saying such will solicit more sales for Big Pharma.

And in the Frequently Asked Questions:

 (https://thefhfoundation.org)

FH foundation, FH treatment, Familial hypercholesterolemia

Actually, most FH mutations are milder than previously thought.[4]

2nd Danish Report, Familial hypercholesterolemia, FH prevalence, Dutch Lipid Clinic Network
Sponsors and their roles in June 2015 https://web.archive.org/web/20150611145304/http://thefhfoundation.org/about-us/sponsors/ 
Pharma sponsors of the FH Foundation

Sponsors as of March 2019

Pharma sponsors of the FH Foundation

Amgen sponsor the FH Foundation

[1] https://thefhfoundation.org/fh-diagnosis-management-and-family-screening

[2] The FH Foundation is promoting an algorithm to find FH. This is the circumstantial approach on a computerized, national scale:  https://thefhfoundation.org/find-fh

[3] “No certain predictors for mutation status in a Danish cohort with familial hypercholesterolemia: A descriptive study” Mads Nybo, Klaus Brusgaard, Annebirthe Bo Hansen; 2007 

[4] Click here and here.