By Kathy Feist
Mike Lane is trying to get the word out to the Black community: If you are over the age of 60, feeling fatigue and tingling in your extremities, have been diagnosed with heart disease but not improving, you may have a deadly genetic disorder called amyloidosis.
While the disease can affect individuals of any ethnic background, cardiac amyloidosis was found to be higher among Blacks (4.6%) than whites (0.4%). Sadly, the disease is rarely diagnosed.
“It’s not on the doctors’ radars,” says Lane. “The average person sees four doctors before getting properly diagnosed.”
Black patients must become their own best advocate, says Lane. Which is why he is involved in a campaign to spread awareness.
“Awareness is the pathway,” says Lane, who, thanks to a new cure, is recovering from the debilitating disease.
Symptoms
Amyloidosis affects all populations, not just African American.
“There is an Irish variant, Portugal variant, different variants, but all lead to the same amyloidosis.” says Lane.
Those of West African descent carry a genetic mutation that makes them more susceptible to cardiac amyloidosis (ATTR). This form mimics congestive heart failure.
Symptoms may include heart rhythm problems, neuropathy, fatigue, swelling in the legs, carpal tunnel syndrome. If someone is not improving from treatment for heart disease, they should be tested for amyloidosis.
Amyloidosis occurs when protein from the liver is deposited and accumulated on an organ or tissue, changing its structure and functionality.
The disease can be detected with a nuclear imaging scan. But it can also be discovered with genetic testing kits often found at drug stores. The responsible gene for the disorder is a single mutation (V122i) found among those with West African ancestors.
A cure
Five years ago, there was no cure for amyloidosis.
In 2018 Lane was unknowingly becoming its victim. He experienced a ruptured bicep muscle after lifting weights. It looked like a “Popeye arm” (a result of accumulated protein deposits). He was also easily exerted.
His different symptoms lead to different specialists, including a cardiologist. But no one was seeing the whole picture and Lane was floundering.
Finally after being tested for Afib at Saint Luke’s Mid America Heart Institute, a nurse determined that his test results did not match up with that diagnosis. Aware of a new specialist who had just joined the hospital’s cardiology team, she requested his opinion. Dr. Brett Sperry, one of the few amyloidosis specialists in the country, diagnosed the symptoms.
Lane was given two years to live.
Having nothing to lose, Lane took part in an experimental drug trial for the disorder. Every three months he flew to Los Angeles to receive an infusion. The drug, Tafamidis, was found to eliminate 60 percent of the protein coming from the liver and was approved by the FDA in 2019.
Lane has been a healthy version of himself ever since and remains on medication.
“Treatment has come a long way,” says his doctor, Brett Sperry. “Ten years ago, there were no FDA-approved treatments, which resulted in physicians often recommending mostly over-the-counter supplements that did not have very good data showing benefit. But now, there are several FDA-approved treatments for ATTR amyloidosis with heart or nerve involvement and several others on the way.”
Costs
While an early diagnosis and quick treatment are key to recovery, one large obstacle is cost, approximately $250,000 a year.
“The hope is that with more patients diagnosed, this will no longer be considered a rare disease and prices will come down,” says Sperry. “More competition in the market should also help.”
St. Luke’s Mid America Heart Institute is currently recruiting patients for clinical trials for medications that may actually remove the amyloid proteins from the heart as opposed to slowing the disease, according to Sperry.
For now, Lane has found that the Medicare Insurance Plan D program helps pay for the treatment once a cap of $3400 has been reached.
Spreading awareness
If you wish to schedule Lane for a group presentation, contact him at 816-510-2641 or email mike@accbf.com.