Millions suffer from a type of cholesterol that is deadly and cannot be treated. Very few know that they are at risk

Millions of Americans are born genetically predisposed to have extremely high levels of a type of cholesterol that causes fatal heart attacks and strokes in middle age, although these people are almost always unaware of their risk.

Cholesterol is called lipoprotein(a), or Lp(a). Like low-density lipoprotein (LDL or “bad” cholesterol), it causes plaque buildup in the arteries. But Lp(a) has a second effect that makes it even more dangerous: it causes blood clots. And unlike LDL, it is entirely genetic, meaning diet and exercise have no effect on Lp(a) levels.

The result is a high probability of suffering from life-threatening heart diseases that run in families, claiming the lives of parents, uncles and brothers between 40 and 50 years old.

“Every member of the family has had a heart attack, a stroke, a bypass or a mesh (inserted into an artery) at age 40,” explained Dr. Steven Nissen, academic director of the Cleveland Clinic Heart, Vascular and Thoracic Institute, of his patients with elevated Lp(a). “They are scared to death.”

Until 64 million Americans have elevated Lp(a) levels. Anyone can have it, although it is more common among people of African and Southeast Asian descent.

Lori Welsh (R) says her mother, Pam Carr, lived decades longer than her ancestors because she knew she was at very high risk for heart attacks and strokes. Courtesy Lori Welsh

Routine blood cholesterol tests could detect Lp(a), but they don’t, largely because there is no effective treatment. As with other forms of high cholesterol, high Lp(a) has no symptoms.

However, with several promising drugs in clinical trials, doctors say the public must be aware of the risk they run.

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Dr. Erin Michos said Lp(a) screening is part of her preventive patient care.

“For me, It doesn’t make any sense that I’m not going to measure it just because I can’t download it.said Michos, associate professor of medicine and director of Women’s Cardiovascular Health Research at Johns Hopkins University School of Medicine in Baltimore. “I measure it in all my patients at least once just to know who has it high because we can do things to reduce their risk.”

Cardiologist Dr. Sahil Parikh believes Lp(a) screening should be expanded.

“The challenge has been: If we look at something and we don’t have a treatment for it, are we doing the patient a favor?” said Parikh, director of endovascular services at Columbia University Irving Medical Center in New York. “Before he didn’t do tests for things he couldn’t treat. But now I do it, because I know that on the horizon we will have effective treatments. “That gives hope to patients.”

One of those experimental drugs is called pelacarsen, from the pharmaceutical company Novartis. Previous studies showed that it significantly reduced Lp(a) levels in 98% of people taking it. The question researchers now ask is whether lower Lp(a) actually reduces early life-threatening heart attacks and strokes. It has already been shown that medications such as statins may protect against heart disease by reducing LDL.

Lori Welsh, 51, living in Dublin, Ohio, is betting that the danger will work. High levels of Lp(a) have been present in her family for years, with devastating effects.

“If you go back five generations in my mother’s family, everyone died of a heart attack or stroke. Nobody was over 54 years old,” Welsh said.

Welsh was only 47 years old when he suffered a heart attack.

“I was driving on a six-lane highway in Columbus, Ohio, and I felt pressure in my chest. “My hands went numb.”

He had a 90% blockage in the heart’s largest artery: the inferior anterior descending artery. The condition is known as widow-maker (the widow maker).

“You go from being a perfectly healthy person on Monday, having a heart attack on Tuesday, and on Wednesday you have a heart history that you didn’t have before,” Welsh explained. “Then you discover there is no easy solution to this.”

Welsh participates in a pelacarsen clinical trial at Ohio University Wexner Medical Center, one of hundreds of research centers across the country. Neither she nor her doctors know if she is receiving the real drug or a placebo. She has not noticed any side effects since she enrolled in the trial.

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Four other drugs against Lp(a) are in different phases of research. Early results for Eli Lilly’s drug lepodisiran show it can reduce Lp(a) by more than 94%. According to Amgen, its drug olpasiran has achieved similar results. And Silence Therapeutics is studying a medicine called zerlasiran. All of these products, including pelacarsen, are administered by injection. Eli Lilly is also testing an oral drug called muvalaplin.

The first results of pelacarsen in the world are expected to be ready next year.

Until the drugs are proven to work, doctors can only treat patients’ other risk factors for heart disease, such as blood pressure control and statins, to lower other forms of cholesterol.

Dr. Wesley Milks, a cardiologist and associate clinical professor of internal medicine at The Ohio State University College of Medicine, said he sees patients “who are aware of their family history and are really trying to prevent a first heart attack.” or a stroke.”

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He said that in those cases, doctors could give patients “statins.” earlier in their lives”.

“The hope is that we can keep them safe until we can get one of these drugs to market,” said Nissen, who is a lepodisiran clinical trial investigator. Both he and other cardiologists call for Lp(a) screening to be generalized.

The test only has to be done once in a lifetime because the level never changes.

“Why wait for the new drugs?” said Michos, of Johns Hopkins. Measuring Lp(a) now allows “identifying a high-risk patient. We can be proactive in prevention. We can take action.”

In other words, maintaining a normal weight, exercising regularly, quitting smoking, and eating a diet rich in fruits, vegetables, and whole grains are effective ways to control overall heart risks, even for people with elevated Lp(a). , Michos stressed.

Lori Welsh is convinced that knowing your Lp(a) level can save lives, although there are still no drugs to treat it. Welsh’s mother suffered the first of her three heart attacks as she approached 50 years old. The doctors analyzed her Lp(a) levels and explained that they greatly increased her heart risk.

“I saw her be more careful with her diet and exercise,” Welsh recalled, adding that from then on her mother paid close attention to any cardiac symptoms. In the end she lived well into her 70s, decades longer than her ancestors.

“The only difference between her and the previous five generations was know that I had lipoprotein (a)”Welsh stated. “That made the difference.”