Katherine Wilemon, founder and CEO of the FH Foundation, recently authored a paper with researchers from Stanford University that highlighted key differences in care for women with familial hypercholesterolemia (FH). The paper published in Current Atherosclerosis Reports highlights the unique needs for the diagnosis and care of women with FH.
In general, women are under-treated for heart disease. Many biases exist in the healthcare system including the mistaken belief that women are more protected from heart disease due to estrogen levels. In addition, FH is commonly misunderstood as well, and standard risk calculators do not take into consideration the increased risk of FH due to lifelong high cholesterol. If untreated, FH can increase the risk of heart disease by up 20 times. The paper begins with the story of Katherine's own diagnosis and struggle to be taken seriously for her own heart attack symptoms. A story the FH Foundation hears all too often.
This is one of the key reasons the FH Foundation works to educate and advocate for better understanding of FH, as well as leads and contributes to FH research. Specifically, this paper includes data from the FH Foundation's CASCADE FH Registry that highlights:
- women are less likely to be on guideline-recommended FH therapy: high intensity statins
- women are more likely to discontinue statin therapy within one year
- women are less likely to be offered more intensive treatment regimens, such as PCSK9 inhibitors
Lifetime care for women with FH
In addition, over the course of a life treatment decisions for women can vary. Special considerations need to be made in the teenage years, again surrounding family planning in the adult years, as well as pre- and post-menopause. Altering treatment during pregnancy and breastfeeding are also highlighted in this article. The FH Foundation has also developed several resources including this FH and pregnancy web page and webinar.
Below you will find key tables and figures from "Women Living with Familial Hypercholesterolemia: Challenges and Considerations Surrounding Their Care." If you are interested in reading the full article, send us a note at firstname.lastname@example.org and we would be happy to share it.
Differences in Care for women in men - data from the CASCADE FH Registry
This figure highlights the disparity outcomes in the CASCADE-FH registry. a Differences in the reduction of LDL-C between men and women. Treated LDL-C levels are higher in women than men (< 0.001). b Statin intolerance between men and women. Women had a higher prevalence of statin intolerance (< 0.001). CASCADE-FH categorized. individuals citing intolerance or allergy as a reason for not being on statins as statin intolerant. c Percentage of patients on lipid-lowering therapy by drug and gender. Women were less likely to be on statin therapy than men (< 0.001). d Achievement of LDL-C levels less than 100 mg/dL or reduction by 50% LDL-C in men versus women. Women were less likely to achieve LDL-C < 100 mg/dL (odds ratio (OR) 0.68, 95% CI, 0.57–0.82) or reduction of 50% LDL-C (OR, 0.79, 95% CI, 0.65–0.96). Adapted from CASCADE-FH registry data
Treatment Considerations Women with FH
Improving Disparities in Care for Familial Hypercholesterolemia
This research builds on additional work of the FH Foundation and our dedicated network of 35 CASCADE FH Registry sites to improve disparities in care for familial hypercholesterolemia. More information can be found in our 2017 publication in Journal of Atherosclerosis as well as this FH Global Summit Session.