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Veterans with hATTR Amyloidosis Need Access to Critical Meds

This Veterans Day, the Veterans Health Administration has an opportunity to show their support for veterans who suffer from hereditary ATTR amyloidosis. It could dismantle the obstacle course of restrictions that keep veterans from accessing the most appropriate treatment to fight their rare, complex and still incurable disease.  

Slow Walking Access to the Treatment  

In a win for patients, the FDA has approved multiple drugs for the treatment of hATTR amyloidosis, a condition that causes abnormal protein build up in a person’s organs.   

However, despite the fact that these medications have separate indications – one medication is approved for amyloidosis-related cardiomyopathy, while three others are approved for amyloidosis-related neuropathy – the Veterans Health Administration has significantly limited coverage for neuropathy patients.  

Under current VHA policy, patients with a neurological presentation of amyloidosis must try and fail cardiac amyloidosis mediation – off-label – prior to accessing an on-label therapy, or be forced to file extensive paperwork in order to access the neuropathy medication. 

While both types of medications treat hATTR amyloidosis, that’s where the similarities stop. They are designed to address distinct symptoms caused by different presentations of the condition that is caused by a build-up of abnormal proteins in the body, with one targeted for neuropathy, while the other is focused on cardiomyopathy. 

Utilization Management Must Go  

These utilization management delays happen at the cost of patients’ health and well-being. The median survival rate for untreated hATTR amyloidosis neuropathy is just 2.5 years after diagnosis, which makes timely access to the most appropriate medication so important. Allowing the disease to progress unchecked can cause irreversible damage to the nervous system and worsen patients’ quality of life.   

And the “fail first” policies for accessing hATTR amyloidosis medications aren’t the only administrative barrier VA-insured veterans face when seeking treatment. Other amyloidosis treatment challenges include:  

  • Restrictive medication rules for cardiomyopathy patients, which permit access to only lower dosages of the cardiomyopathy medication than those recommended by the FDA. 
  • High copayments, which can make treatments unaffordable.  
  • Inconsistent policies from region to region, which has the effect of sending veterans shopping for a facility willing to provide the access they need.  

America must do better. Those who fought for the country deserve broad support in their fight against amyloidosis. At a minimum, they should have uncomplicated and affordable access to the most appropriate treatment for their type of the condition.