{"id":2223,"date":"2017-04-07T02:17:35","date_gmt":"2017-04-06T16:17:35","guid":{"rendered":"https:\/\/www.athero.org.au\/fh\/?page_id=2223"},"modified":"2017-05-01T00:48:31","modified_gmt":"2017-04-30T14:48:31","slug":"national-fh-registry-newsletter-may-2017","status":"publish","type":"page","link":"https:\/\/www.athero.org.au\/fh\/patients\/fh-registry\/national-fh-registry-newsletter-may-2017\/","title":{"rendered":"National FH Registry newsletter May 2017"},"content":{"rendered":"

May 2017
\n <\/strong>\"line\"<\/a>\"FH<\/a>\"line\"<\/a>\"Quote\"<\/a>\"line\"<\/a>\"Fourier<\/a>Exciting news particularly for people with familial\u00a0hypercholesterolaemia (FH) with the presentation in March 2017 of the much anticipated trial of the\u00a0PCSK9 inhibitor\u00a0evolocumab (Repatha).<\/strong><\/p>\n

The Past<\/strong><\/p>\n

It is likely to have been as important an event as the announcement of the first successful trial of a\u00a0statin (simvastatin) in 1994.<\/p>\n

Statins\u00a0have of course revolutionised the treatment of\u00a0FH which had previously been a serious cause of premature heart disease. However even today with the highest doses of\u00a0statins together with the drug\u00a0ezetimibe (Ezetrol) many patients with\u00a0FH cannot lower their\u00a0LDL cholesterol levels to the desired concentration in blood.<\/p>\n

We do know that the lower the\u00a0LDL level the lower the risk of heart attack and other forms of arterial disease. With each major trial since the 1994 report average\u00a0LDL levels have been reduced further guiding doctors to targets for\u00a0LDL which the clinical trials have indicated to be most beneficial.<\/p>\n

The Fourier Trial<\/strong><\/p>\n

Many lipid centres in major hospitals have been trialling the\u00a0PCSK9 inhibitors for the last 4 years with astonishing falls in\u00a0LDL levels. However it is essential to show that this translates into better outcomes that is significantly fewer heart attacks,\u00a0strokes and obstruction of coronary arteries. This was achieved in the FOURIER trial of the drug\u00a0evolocumab marketed in Australia as Repatha.<\/p>\n

In a large double-blind controlled study of 27,564 patients with established cardiovascular disease, all receiving optimal\u00a0statin therapy with half the group also treated with\u00a0evolocumab and the other half a placebo or inactive compound. <\/p>\n

The Trial Results<\/strong><\/p>\n

From an already low level of\u00a0LDL (2.4 mmol\/L due to\u00a0statin and\u00a0ezetimibe if needed) the\u00a0LDL was reduced to a record low of 0.78 mmol\/L on average (59% reduction beyond that achieved by statins) without any serious safety issues. The results were significant reductions in myocardial infarcts (heart attacks), strokes and the need for dealing with new blockages in arteries. Such trials have several different pre-determined statistical means for evaluating the result. These provided significant reductions of combinations of new events of between 15% and 25% over an average period of a little over 2 years. There was however no significant reduction in mortality from the heart attacks or stroke, possibly because the trial was not sufficiently long. Trials are often stopped when it becomes clear that the active treatment is significantly better than the placebo intervention. In this trial the difference between the active and placebo continued to separate over time suggesting bigger differences if the trial had been continued.<\/p>\n

The large fall in\u00a0LDL not seen with any previous medication was observed in the many earlier shorter-term studies that investigated the efficacy of the drug and its safety. In those studies there was a slight suspicion of cognitive impairment. However in a simultaneous trial to FOURIER (called EBBINGHAUS), cognitive function tests were carried out repeatedly in nearly 2000 patients in FOURIER with no significant deterioration in cognitive function (the small numbers in whom some impairment occurred were identical in the placebo and active arms). A concern with\u00a0statins that diabetes may be induced (although this appears to occur in those who were pre-diabetic) was not seen in the FOURIER trial.<\/p>\n

What is\u00a0PCSK9 and what are\u00a0PCSK9 Monoclonal Antibodies?<\/strong><\/p>\n

PCSK9\u00a0(short for a very lengthy name) is a protein that circulates in the blood and binds to the\u00a0LDL receptor which is responsible for removing\u00a0LDL from blood in an orderly fashion. As you the readers will know\u00a0FH is due to a genetic reduction in the number of properly functioning\u00a0LDL receptors resulting in less efficient removal of circulating\u00a0LDL predisposing to atherosclerosis in arteries. In 2006 American investigators reported families, mainly of African origin, who produced much lower amounts of\u00a0PCSK9 than normal. They had very low\u00a0LDL cholesterol levels and experienced nearly 90% fewer heart attacks than people with usual\u00a0PCSK9 levels. Presumably such people had more\u00a0LDL receptors because these were not being bound and destroyed rapidly. The more functioning receptors the lower the\u00a0LDL level. (Statins are effective because\u00a0LDL receptors are induced to function more efficiently).\u00a0PCSK9 inhibitors improve the survival of\u00a0LDL receptors.<\/p>\n

It now seems likely that nearly 10% of people with typical\u00a0FH produce too much\u00a0PCSK9 (the opposite of having too little as in the originally described families with low LDL). That of course means excessive amounts of\u00a0LDL and greater risk of heart attack.<\/p>\n

The drug such as\u00a0evolocumab is an antibody that is specifically developed to bind and inactivate\u00a0PCSK9 in the circulation allowing\u00a0LDL receptors to survive longer. It has to be injected subcutaneously under the skin with a device that makes injecting simple and almost painless.<\/p>\n

The Future<\/strong><\/p>\n

Producing antibodies that target one specific protein is expensive so the cost of\u00a0Repatha is high as well as that of another drug\u00a0alirocumab or\u00a0Praluent with similar efficacy and safety (but not yet tested in a large trial such as FOURIER).<\/p>\n

However, recently\u00a0Repatha was approved to be subsidised under\u00a0PBS (Pharmaceutical Benefits Scheme) for severe genetic homozygous\u00a0hypecholesterolaemia where the individual receives abnormal genes from both parents. It is available under\u00a0PBS for people who qualify on the basis of what is known as the Dutch Lipid Score that takes into account the level of LDL, the presence of premature cardiovascular disease in the patient and\/or first-degree relatives, a history of familial hyperecholcesterolaemia, and the presence of cholesterol deposits as an arc over the cornea or in tendons such as the Achilles tendon.<\/p>\n

Hopefully\u00a0PBS approval will be granted to other categories such as patients with premature cardiovascular disease whose\u00a0LDL levels are inadequately lowered with\u00a0statin and for those who are clearly unable to tolerate statins. It will stimulate both medical practitioners to diagnose\u00a0FH and for subjects with\u00a0FH to seek out relatives to be screened for their cholesterol level.<\/p>\n

We have entered a further exciting episode in countering cardiovascular disease.<\/p>\n

\"\"<\/a>\"button\"<\/a>\"line\"<\/a>\"\"<\/a>Community and Patient Preference Research<\/strong> (CaPPRe) are conducting\u00a0research on behalf of a pharmaceutical company with people who have high cholesterol.<\/p>\n

CaPPRe are specialists in conducting research to determine people\u2019s preferences, in this case what people value, need and expect in the treatment of high cholesterol.<\/p>\n

CaPPRe\u00a0invite you to participate in the\u00a0research which will involve a 15 – 20 minute online survey.<\/p>\n

Your participation will be valuable in improving the understanding of what is important to you in the care of your high cholesterol and helping make better treatments available in Australia for high cholesterol patients. The results will be published so others can also\u00a0learn from them.<\/p>\n

If you are interested in participating in the\u00a0survey or would like to know more about the research,\u00a0please click on the link http:\/\/bit.ly\/2o234wB<\/a>.<\/span><\/p>\n

If you know someone else with a history of high cholesterol who may be interested in this research, maybe a relative or friend, please feel free to forward the link to them.<\/p>\n

CaPPRe respects your privacy. Your details will not be forwarded to any other parties; nor will you be contacted by CaPPRe for anything other than this research project unless you choose to be. All responses are treated with the strictest confidentiality. The report of the research findings will be presented in aggregate form, with no individual person identified. CaPPRe complies with the Privacy Act 1988 (Cth) and the Australian Privacy Principles in relation to the collection and disclosure of information.<\/span><\/p>\n

If you have any questions or require any additional information please contact CaPPRe on (02) 9152 8603 or email info@cappre.com.au.<\/span><\/a>\"line\"<\/a><\/p>\n\n\n\n
\u00a0<\/td>\n\"Website<\/a><\/td>\n\u00a0<\/td>\n\"Facebook<\/a><\/td>\n\u00a0<\/td>\n\"Twitter<\/a><\/td>\n\u00a0<\/td>\n\"Email<\/a><\/td>\n\u00a0<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

\"line\"<\/a>\"FHAN<\/p>\n

Copyright \u00a9\u00a02017 FH Australasia Network. All rights reserved.<\/em><\/p>\n

Our mailing address is:<\/strong>
\n FHWA
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\n Rear 50 Murray Street
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Why did you receive this email?<\/strong>
\n When you signed up for the National\u00a0FH Registry you ticked the box for information.<\/p>\n

Don’t want to receive\u00a0emails in the future?<\/strong>
\n You can\u00a0unsubscribe\u00a0by emailing\u00a0FHWA@health.wa.gov.au<\/a><\/span> with UNSUBSCRIBE in the subject line.\"line\"<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

May 2017 Exciting news particularly for people with familial\u00a0hypercholesterolaemia (FH) with the presentation in March 2017 of the much anticipated trial of the\u00a0PCSK9 inhibitor\u00a0evolocumab (Repatha). The Past It is likely to have been as important an event as the announcement of the first successful trial of a\u00a0statin (simvastatin) in 1994. Statins\u00a0have of course revolutionised the … Continue reading National FH Registry newsletter May 2017<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"parent":838,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_links_to":"","_links_to_target":""},"acf":[],"yoast_head":"\nNational FH Registry newsletter May 2017 - FH Australasia Network<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.athero.org.au\/fh\/patients\/fh-registry\/national-fh-registry-newsletter-may-2017\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"National FH Registry newsletter May 2017 - FH Australasia Network\" \/>\n<meta property=\"og:description\" content=\"May 2017 Exciting news particularly for people with familial\u00a0hypercholesterolaemia (FH) with the presentation in March 2017 of the much anticipated trial of the\u00a0PCSK9 inhibitor\u00a0evolocumab (Repatha). The Past It is likely to have been as important an event as the announcement of the first successful trial of a\u00a0statin (simvastatin) in 1994. 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