Dear British Heart Foundation


Dr David Diamond gave a presentation in California in February 2020. David quoted a statement made by the British Heart Foundation (BHF) about Familial Hypercholesterolemia (FH): “If you don’t have treatment, 1 in 2 men and nearly 1 in 3 women with FH will develop coronary heart disease by the age of 55.”

This reminded me that I had exchanged emails with the BHF about this statement back in February 2018. The statement is incorrect and yet has still not been corrected.

Dear British Heart Foundation,

It’s time that this was corrected…

The BHF Exchange
The following section reports the verbatim exchange between me and the BHF:

Subject: Query about something on the web site
Date: Sun, 4 Feb 2018 14:58:54
From: Zoe Harcombe
To: [email protected]rg.uk
Dear BHF
In your PDF on Familial Hypercholesterolemia you say “If you don’t have treatment, 1 in 2 men and nearly 1 in 3 women with FH will develop coronary heart disease by the age of 55.”
Please do you have the source of this statement?
Many thanks
Kind regards – Zoe


Subject: Familial hypercholesterolaemia stats
Date: Fri, 9 Feb 2018 11:55:40
From: [email protected]
To: Zoe Harcombe
Dear Zoe,
You can find the information regarding familial hypercholesterolaemia in the full guideline here: https://www.nice.org.uk/guidance/cg71/evidence/full-guideline-pdf-241917805 it can be found at the bottom of Page 28, under the section: Introduction.
Kind regards,
Heart Helpline


Subject: Re: Familial hypercholesterolaemia stats
Date: Sat, 10 Feb 2018 17:46:47
From: Zoe Harcombe
To: [email protected]
Dear Heart helpline
Many thanks for this. It confirmed my suspicion that the statement in your booklet is wrong.
The bottom of p28 says: “The elevated serum cholesterol concentrations that characterise heterozygous FH lead to a greater than 50% risk of coronary heart disease by the age of 50 years in men and at least 30% in women by the age of 60 years.”
In your PDF on Familial Hypercholesterolemia you say “If you don’t have treatment, 1 in 2 men and nearly 1 in 3 women with FH will develop coronary heart disease by the age of 55.”
1) you can’t average 50 for men and 60 for women to 55.
2) you can’t imply that with ‘treatment’ this won’t happen, unless you can provide a reference for that?
I look forward to hearing from you.
Kind regards – Zoe

[ZH note today – I should also have challenged how “greater risk” has become “will”]


Subject: FW: [EXTERNAL] Re: Familial hypercholesterolaemia stats
Date: Wed, 21 Feb 2018 16:47:48
From: ‘SP’ (Name protected), British Heart Foundation
To: Zoe Harcombe
CC: [email protected]
Hi Zoe,
Thanks for your feedback on our FH booklet. Can I ask what version of the booklet you are referring to as I can’t seem to find the statements you’ve referenced? If you could send me the PDF, or the short sequence on the back page under print code (e.g. M111F/0218).

These booklets are shortly up for medical review so we take your comments into consideration during this time.

Kind regards,
‘SP’


Subject: Re. FW: [EXTERNAL] Re: Familial hypercholesterolaemia stats
Date: Sat, 24 Feb 2018 09:36:27
From: Zoe Harcombe
To: ‘SP’
CC: [email protected]
Hi ‘SP’
It’s on p3 of this https://www.bhf.org.uk/publications/heart-conditions/familial-hypercholesterolaemia—your-quick-guide
In any revisions, it would surely be more accurate and less scaremongering to say that 70% of women with FH WON’T have heart disease by the age of 60? (And thus, logically, cholesterol is not the issue!)
Kind regards – Zoe


 

And that was the last I heard from the BHF.

This is long overdue being corrected BHF…

2 thoughts on “Dear British Heart Foundation

  • avatar
    March 5, 2020 at 2:07 pm
    Permalink

    I see two things wrong here. The first is that people with Familial Hypercholesterolemia are more likely to die due to heart disease but less likely to die of other diseases such as cancer or dementia. The high cholesterol levels seem to have a protective effect. The second is that there is a treatment for Familial Hypercholesterolemia which involves diet and certain micronutrients (taken as supplements) which lower the effects of plaque buildup and can keep the arteries completely clear. It is a struggle for people like myself who can manage only a lowering of carbohydrates as we can become very ill on an LCHF diet, something I found out to my cost, but we can get rid of all processed foods and reduce our carbs to about 100 g a day. Please keep up the good work Zoe. It would be nice if we could find the sweet spot as far as Total Cholesterol is concerned but, as long as we mix up lipoproteins and cholesterol I can’t see that happening.

    Reply
  • avatar
    February 24, 2020 at 9:19 pm
    Permalink

    Also, there is a baseline risk of CHD by age “55” in people without FH, so the increased risk with FH is not the same as the risk with FH.
    And the risk rate without treatment is the risk rate from the pre-statin era, when smoking rates were much higher, city air was lethal, workplace pollutants were not regulated, etc.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.