Mackenzie has been denied PCSK9 inhibitors to treat her familial hypercholesterolemia (FH)
Mackenzie tells her story of trying to lower her cholesterol to avoid the heart disease that runs in her family. She shares how she cannot get approved by her insurance plan for a medicine her doctor prescribed to lower her LDL (“bad”) cholesterol. Mackenzie has a genetic disorder, familial hypercholesterolemia (FH), and is at great risk for early, aggressive heart disease. FH is a life-threatening, inherited, condition that causes high cholesterol from birth and can lead to early heart disease. #KnowFH
Mackenzie has been prescribed novel lipid-lowering therapy, a PCSK9 inhibitor, because the medicines she already takes are not able to lower her cholesterol enough. Evidence continues to demonstrate that lowering LDL (“bad) cholesterol reduces the risk for premature death and the specific burdens of heart disease.
Two years after these novel therapies were approved by the FDA for the treatment of FH, too many people with FH remain at risk for early heart disease because their cholesterol is still too high – like Mackenzie. They are not prescribed medication that can help them, they are denied access, are unable to get through the mountains of paperwork required for authorization, or their copay is too high.
The FH Foundation is leading an effort to educate and advocate for change and ask you to join us by sharing Mackenzie’s story.
True Story of a Heart Attack and FH Diagnosis
It took a heart attack for Joe Farrington to find out he had familial hypercholesterolemia (FH). Even though he discovered he had high cholesterol at 19 years old, doctors hadn’t explained that FH is different.
Joe’s advice to others is “Don’t be like this Joe.” Get your high cholesterol checked and if you have a family history of early heart disease, make sure it isn’t FH.
Individuals with FH have a high amount of low density lipoprotein (LDL, or “bad”) cholesterol in their blood from birth. Individuals with FH are unable to remove (or metabolize) excess LDL-C from their body so it builds up in the bloodstream.
Over time and left untreated, elevated blood cholesterol can lead to blockages in the heart and blood vessels, causing heart attacks, the need for coronary bypass surgery or stents, and even premature death. FH can be diagnosed and treated in both adults and children.
Dan’s Battle for An Accurate Diagnosis and Treatment for Familial Hypercholesterolemia
Dan is only 32 years old, but has already almost lost his life.
He never dreamed he was on the verge of a heart attack, but knew something was wrong given persistent chest pain and a cholesterol reading of 420 mg/dl Dan struggled to get an accurate diagnosis for his condition, familial hypercholesterolemia (FH), from initially just being sent home and given antacids to fighting for a stress test that revealed he needed heart bypass surgery.
He was finally diagnosed with FH. Like many others with FH, he was prescribed a maximum statin treatment to manage his FH, but was still unable to reduce his LDL cholesterol to safe levels. Although PCSK9 inhibitors have been shown to lower LDL cholesterol and reduce the risk of heart attacks, Dan’s insurance did not understand the severity of his FH diagnosis and refused to approve medication critical to saving his life.
#FHCantWait for diagnosis. It can’t wait to be treated.
Saving my family from the deadly consequences of familial hypercholesterolemia (FH)
Michelle had high cholesterol her entire life, but didn’t know it was familial hypercholesterolemia (FH) and passed down from her dad. Then, she had pain in her chest and ended up with two stents for two “totally occluded arteries.”
Thanks to the FH Foundation Michelle now knows that she FH. FH is the most common inherited condition that causes early heart disease. FH leads to very high cholesterol and left untreated, leaves individuals at a 20 times higher risk for heart disease.
FH is passed down through families. Every child of someone with FH has a 50% of inheriting the condition. Which is why Michelle is having her family screened for high cholesterol and FH.
Avery’s Fight for HoFH and Familial Hypercholesterolemia
Avery has a rare disorder known as Homozygous Familial Hypercholesterolemia – HoFH – that is causing early heart disease. Familial Hypercholesterolemia (FH) is a common genetic disorder that causes extremely high LDL Cholesterol from birth. A lifetime exposure to such high levels “bad” cholesterol can lead to early, aggressive heart disease.
For most with FH, there are effective treatments available to help prevent heart disease. Early diagnosis and treatment are key. But Avery has the rare form of FH – Homozygous FH – and unfortunately, her treatment options today are very limited.
Avery fights every day while her parents hope that a cure will come soon.
Access Health: Familial Hypercholesterolemia
Access Health goes into depth of the signs and symptoms of Familial Hypercholesterolemia.
2016 FH Global Summit Speakers
A summary of all the speakers at the 2016 FH Global Summit
The Future of Specialty Drugs Part 1
Katherine Wilemon panelist talk on the future of specialty drugs.
2015 FH Global Summit: FH at the Crossroads
An animation on FH.
Kathy’s Journey: Finding a Path
Kathy tells her story with FH.
A Story of Hope – The FH Foundation
18 year old Hope goes on an enlightening musical journey to explore FH (familial hypercholesterolemia) and discovers that by taking control and sticking to a few rules she can not only live a normal life but empower others to do the same.
Familial Hypercholesterolemia – The Doctors
Katherine Wilemon, Founder, President and CEO of The FH Foundation, on the television show The Doctors.
Living With HoFH – By Jonathan Karas
Jonathan Karas speaks about living with HoFH.
HoFH – Katherine Wilemon
HoFH is the most severe form of familial hypercholesterolemia (FH). Learn more about this genetic condition from FH Foundation founder, president, and CEO, Katherine Wilemon.
A Message About FH – Dr. Joshua Knowles, MD, PhD
Dr. Joshua Knowles, MD, PhD shares a message about Familial Hypercholesterolemia and how it affects families.
A Message About FH – Dr. Henry Ginsberg, MD
Dr. Ginsberg, MD shares his high hopes for families with Familial Hypercholesterolemia.
WVU Health Report- CASCADE Cholesterol
More than 34 million Americans suffer from high cholesterol. Familial Hypercholesterolemia is an under diagnosed form of the disease marked by extremely high cholesterol and high risk of an early heart attack. Katherine Wilemon was told she had high cholesterol at age fifteen. After suffering a heart attack at 38, doctors diagnosed her with Familial Hypercholesterolemia.
Genetics of FH Webinar – Amy Sturm, LGC
Webinar with Amy Sturm discussing the genetics of FH.
FH Global Summit 2014 – Daniel Hommes, MD, PhD
Models of success in other chronic diseases.
FH Global Summit 2014 – Kyra Bobinet, MD, MPH
Changing Patient Engagement: Increasing Adherence and Patient Engagement as Part of Lifelong Management.
FH Global Summit 2014 – Seth J. Baum, MD
Strategy of Cascade Screening in the U.S. With/Without Genotyping (Presenting proposal on behalf of The FH Foundation).
FH Global Summit 2014 – Albert Wiegman, MD, PhD
Reverse Cascade Screening/Cascade Screening
FH Global Summit 2014 – Nadeem Qureshi, DM
Electronic Medical Record (EMR) Screening in Primary Care Practice in England
FH Global Summit 2014 – James Underberg, MD
Education, Education, Education: Differentiating Between Lifestyle – Induced High Cholesterol and Autosomal Dominant Genetic Lipid Disorders.
James Underberg, MD Speaks On Medical Community (U.S.)
Comprehensive Overview of Familial Hypercholesterolemia by Dr. Seth J. Baum, FH Foundation Board of Directors Member
This lecture gives a detailed scientific explanation of this genetic disorder, it’s diagnosis, and available treatments. It has been presented to healthcare practitioners and will be helpful for medical professionals wanting to review or learn more about FH. It also offers patients a perspective that is not usually accessible to them. It’s a must-see for anyone interested in the diagnosis and treatment of familial hypercholesterolemia (FH).
2014 ICD-10 Coordination and Maintenance Committee Meeting of familial hypercholesterolemia
The FH Foundation applies and presents the case for distinct diagnostic reimbursement code of familial hypercholesterolemia.
Joshua Knowles MD – CMO of The FH Foundation
Joshua Knowles MD is a dedicated Board member of The FH Foundation, as well as our Chief Medical Officer. In this video shot at the Stanford University Medical Center, Dr. Knowles explains the nature of FH and what implications it has for those affected.
FDA Patient Network: Bringing Your Voice to Drug and Device Approval and Safety
Homozygous Familial Hypercholesterolemia
On the Balancing Act, FH Foundation President & CEO discusses the mystery behind Homozygous Familial Hypercholesterolemia (HoFH) – the rarest, yet most severe form of FH.
Faces of FH: Brenda Gundell
Brenda Gundell found out she had FH and the journey has not been easy. Luckily, she is now treated by Mary Ann Champagne at Stanford Hospital and feels great! Hear her tell her FH story and the effort it took to get where she is now, while clinical nurse specialist Mary Ann Champagne and geneticist Joshua Knowles explain the medical side of FH.
Familial Hypercholesterolaemia (FH) – Suzanne’s story
Suzanne talks about how she found out she has familial hypercholesterolaemia (FH). She also tells us how it has affected her and her family, and what she does to reduce her blood cholesterol levels.
CDC’s Expert Commentary on Familial Hypercholesterolemia
On September 20th, 2010, CDC’s Office of Public Health Genomics (OPHG) released a new podcast about the benefits of cascade screening to identify familial hypercholesterolemia, a common genetic disorder that causes high levels of low-density lipoprotein (or LDL) cholesterol that are present from birth. Presented by Rene´e M. Ned, PhD, MMSc, health scientist from OPHG.
Familial Hypercholesterolemia – English
Discover how the common genetic disorder familial hyper- cholesterolemia (FH) increases the level of LDL (bad) choles- terol in the blood. Learn about the genetic mutations that cause FH, and see how FH leads to an accelerated rate of atherosclerosis or cholesterol buildup in the blood vessels.
Hipercolesterolemia Familiar – Spanish
Descubra como el desorden gene´tico comu´n denominado hipercolesterolemia familiar (HF) aumenta el nivel de LDL colesterol (colesterol malo) en la sangre. Aprenda sobre las mutaciones gene´ticas que causan HF y vea como la HF conduce a un proceso acelerado de aterosclerosis o acumu- lacio´n de colesterol en los vasos sangui´neos.
Understanding Cholesterol (Heart Basics #5)
Cholesterol. You hear the word a lot. But what exactly is Cholesterol, and why should you be concerned about it? Watch More Health Videos at Health
Christian – Individual Living with FH
Homozygous Familial Hypercholesterolemia is a rare and severe form of FH, which affects 1 in a million people. Christian is one of them. Watch the video or read his story here.
Wenter – Individual Living with FH
Familial Hypercholesterolemia affects about 1 in 500 individuals but only about 20% have been diagnosed. In this video you will meet a woman named Wenter who is living with FH. Wenter shares the story of her journey to a diagnosis and how her FH diagnosis has changed the life of her entire family. You will also meet one of Wenter’s partners in her care, Dr. Amit Khera. Dr Khera is part of a growing group of physicians known as Lipid Specialists. Dr. Khera shares what signs you need to be aware of and steps you need to take if you think FH may be present in your family.
- What is Familial Hypercholesterolemia
- Homozygous Familial Hypercholesterolemia
- Do I have FH?
- What are the risks with FH?
- Women with FH & Pregnancy
- Children with FH
- Men with FH
- Tools and Resources