Blood Clots and How to Stop Them

Blood clots kill about 100,000 Americans every year. Five years ago, I was almost one of them.

I've learned a lot since then. I now know that anyone at any age can be vulnerable to blood clots -- and that most doctors aren't properly trained to detect them. In fact, considering how common and dangerous they are, blood clots are shockingly underdiagnosed. We urgently need programs and policies to educate the public on the dangers of clots, incentivize doctors to look for them, and make sure effective treatment is available.

One day after work in 2018, I was on the way out of the drycleaners when I suddenly felt like I couldn't breathe. At first, I thought I was having a heart attack -- but then I noticed I wasn't experiencing any pain in my chest.

At the emergency room after an initial series of exams, doctors there told me I had fibroids, painful cell growths in the uterus. Good to know -- but that didn't explain my trouble breathing and elevated heart rate. After many hours, they scanned my lungs -- which, I later learned, they would have done right away, given my symptoms. The scan revealed multiple, life-threatening blood clots.

After everyone went quiet for a moment, the doctors took me straight to the ICU and saved my life. But it was an incredibly close call.

Given how common blood clots are, my story could have been anyone's. Sometimes, for a variety of reasons, blood coagulates into a gel-like or semi-solid mass in the bloodstream. If it forms in a deep vein in the arm, leg, or pelvis, it's called deep vein thrombosis, or DVT, which can cause swelling and pain. If a bit of that clot breaks off and travels to the lungs, causing a pulmonary embolism, it can lead to death.

According to the Centers for Disease Control, blood clots affect 900,000 Americans each year, and around 100,000 die from them. Anyone can be at risk for DVT or a pulmonary embolism. People who have undergone surgery, particularly orthopedic surgery, are at risk. Clots after surgery kill otherwise healthy young people all too often. Clots account for around 9% of all pregnancy-related mortality. Anyone who has cancer is also at higher risk. In fact, even sitting in one place for a long period of time, like on an airplane, can cause a blood clot.

Not enough people know they are at risk. That's why, after my ordeal, I began volunteering with the National Blood Clot Alliance to spread awareness. The group started as an advocacy campaign funded by the CDC. The campaign led to Florida Gov. Ron DeSantis signing a law in June establishing a working group to study how many Floridians are affected, consider guidelines for standards of care, and develop a system to monitor risk.  

Other states can and should replicate the Florida model. But the federal government has a role to play as well. We need a national surveillance and screening system for blood clots. And Congress can help make sure people at risk get the right treatments at affordable prices.

People at risk for blood clots often take blood thinners like Eliquis or Xarelto. But depending on patients' insurance plans, they might not get the drug that's best in their particular case. That's because of the influence of pharmacy benefit managers -- the middlemen in the drug supply chain. PBMs dictate which drugs end up in favorable positions on insurance formularies and which require patients and their doctors to jump through hoops like prior authorization. PBMs sometimes even push patients toward higher-priced drugs and higher out-of-pocket costs if it's better for their own bottom lines -- even if cheaper generics are available.

Congress could save many lives by passing the PBM reforms currently under consideration in Washington. Rather than playing favorites, PBMs and their insurer-partners need to offer all effective treatments to patients on reasonable terms. And their profit margins shouldn't be tethered to the list price of a medicine. Legislation that includes de-linking PBM compensation from the list price would go a long way toward improving access to treatments and protecting the doctor-patient relationship.

No one should have to go through an experience like mine, with hospital emergency personnel themselves insufficiently aware of the risks and symptoms of a potentially lethal blood clot condition. I'm proud to advocate for preventative programs. State and federal lawmakers need to step up starting now.

Leslie Lake is volunteer president of the National Blood Clot Alliance.