Accessing proper health care can be a tough fight for America’s veterans. Those living with a rare disease called amyloidosis provide a telling example.
Hereditary transthyretin amyloidosis can be cardiac, causing symptoms like shortness of breath and fatigue. The disease can also be neurologic, causing tingling, numbness and loss of movement control. Because amyloidosis is rare and has a range of symptoms, it can take time to diagnose. When veterans and their health care providers finally identify amyloidosis, they are eager to begin treatment.
VA coverage policies, however, can hamper those plans.
While different FDA-approved medications exist for the different types of the disease, the VA directs all hereditary transthyretin amyloidosis patients to a single drug. That’s the oral medication designed for people with a cardiac presentation of the disease.
For those who have cardiac amyloidosis, this may be fine – at least in theory. But certain VA centers offer the medication only in the lowest dosage. For some patients, that’s not enough.
Meanwhile, the cardiac medication is probably not the best treatment for veterans with neurologic amyloidosis. Nevertheless, the VA’s policy requires patients to try it for nine months unsuccessfully before they can access an infused medication that’s designed for their neurologic symptoms.
This requirement, called “fail first,” is frustrating for patients and providers. And, because the disease is progressive, delays in effective treatment can cause irreversible harm to patients.
People with neurologic amyloidosis have another treatment option – an injected medication. But the VA does not have the treatment on its formulary of approved medications. To provide the medication to a patient, a health care provider must collaborate with the VA site pharmacist to complete what’s known as a non-formulary request.
It’s yet another time-consuming process that delays treatment for veterans.
The VA system has been plagued by reports of long wait times and complaints of needed services being unavailable at convenient locations. In response, the VA launched a new program in 2019 to broaden veterans’ access to providers. The reforms did not address access to treatments, though. Improved medication access through the VA, along with recently updated diagnostic guidelines for the disease, could help shorten the path to treatment for veterans with hereditary transthyretin amyloidosis.
Veterans, like all patients, deserve the medication that fits their specific disease and symptoms. As America pauses to honor veterans this year, policymakers might reflect on how better access to health care is a fitting – and well deserved – gesture of gratitude.
