Insurers Could Deny Coverage to People With Alzheimer’s Risk Genes

Scientists are looking for ways to detect cognitive decline and Alzheimer’s faster, so that they could treat the disease sooner. The holy grail of this research involves discovering accurate biomarkers — like a protein, gene, or the results of a digital cognitive test — that predict the risk of cognitive decline or Alzheimer’s. 

With 23andMe genetic tests and new blood tests on the market which can detect new biomarkers, should you get tested? Consider this: An insurance company could raise your premiums or even deny coverage for long-term care insurance because of your test results — results that experts say might not even be accurate or actionable. 

This sounds illegal, but according to Claire Erickson, PhD, who researches medical ethics and health policy at the University of Pennsylvania, technically, it isn’t. There are no laws that protect people who carry biomarkers of Alzheimer’s — genes like APOE4 or proteins like pTau-217 and pTau-181 — from many types of insurance discrimination. 

As blood tests for Alzheimer’s become easier to access, even without a doctor’s prescription, Erickson worries that it could allow insurance companies to discriminate against patients.

“As it stands today, there are no protections for biomarker information [detected from] direct-to-consumer tests,” she told Being Patient. “It’s going to open a can of worms that I don’t think that we’re prepared for.”

Why genetic discrimination still matters for Alzheimer’s disease

Patients in the early stages of Alzheimer’s who want to take the anti-amyloid drug Leqembi might need to get tested for the APOE4 genetic variant to make sure they aren’t at risk of developing side effects like brain bleeds or brain swelling.  

While there are U.S. laws aimed at stopping genetic discrimination, they aren’t broad enough according to Hank Greely, a Stanford law professor who studies the ethics behind new technologies related to neuroscience and genetics. 

In a Being Patient live talk, Greely explained that the US Genetic Information Non-Discrimination Act (GINA) of 2008 which was intended to provide protections fails in important ways: “The act only deals with employment and health insurance, but it doesn’t deal with life insurance and probably most significantly for the Alzheimer’s community, it doesn’t deal with disability insurance or long-term care insurance.”

Neurologists Dr. Madhav Thambissetty and Dr. Robert Howard, raised similar concerns in a joint op-ed published in the journal JAMA Neurology. “APOE4 carriers are more than twice as likely to change their long-term insurance coverage than non-carriers,” they wrote. But if the company they want to switch to discovers that they carry these genes, they could face steeper premiums or be denied insurance even though there is a chance they may never develop Alzheimer’s disease.

In theory, the insurers could use the information about APOE4 status to determine whether or not they will provide long-term care coverage for a healthy individual in the future, they said. 

And the effects might not stop with the person who took the test: APOE testing also inadvertently discloses the status of children and other family members, who could also be affected by insurance decisions later on in life. 

Greely added that GINA only protects against genetic discrimination, adding that it doesn’t protect against “blood-based biomarkers, cerebral spinal fluid biomarkers, neuroimaging or anything else.”

What You Need to Know About Long-Term Care Insurance in the U.S.

Discrimination against protein biomarkers of Alzheimer’s

New blood tests might make it easier for doctors to screen for Alzheimer’s disease and, in conjunction with neurological testing, amyloid PET, and lumbar punctures, help diagnose Alzheimer’s disease. 

But people can also take some of these blood tests even if doctors don’t suspect they’re at risk of Alzheimer’s. Quest Diagnostics makes these tests available to anyone over the age of 18 and has a few hundred dollars lying around. Currently, there aren’t any laws on the books in the US that prevent discrimination based on the levels of Alzheimer’s biomarkers in the blood. 

According to Erickson, this information isn’t protected by health privacy laws either since Quest’s blood test is direct-to-consumer. That means the data could be shared with insurance companies that could use it to determine whether or not to provide certain kinds of coverage. 

“Basically, your protections are whatever protections are included in the agreement with the company,” Greely explained. “Most of them want to be able to use your data for their own purposes.” This might involve sharing and selling the data. 

Blood tests that are initiated by a doctor however, may be protected at least by health privacy laws. While insurance companies aren’t currently asking people to disclose their biomarker status, Erickson speculates that within five to 10 years, most insurers would want to know this type of information, especially as accessibility to biomarker testing continues to expand. 

“A long-term care insurance company has a vested interest in knowing if you are at increased risk of developing Alzheimer’s or some other cause of dementia,” she said. 

Erickson and other researchers are cognizant that there are now new ways to screen for and diagnose diseases, but legal protections usually lag behind. Only two countries in the world — Albania and Switzerland — had laws on the books that would at least prevent some biomarker based discrimination.

A 2023 research article authored by Erickson and her colleagues, on which Erickson was lead author, notes that  “a GINA-like law for biomarkers would prohibit health insurers from discriminating on the basis of biomarker information.” However, searching online in January 2024, there doesn’t seem to be any ongoing legislative debates or proposals for such legislation. 

“Scientific advancements typically far outpace the policy world,” she said. “We’re trying to stay forward thinking and get the ball rolling on getting these protections.”