I have spent years advocating for patients living with amyloidosis, and one thing has become clear: for many patients, the hardest part is not always the disease itself, but rather the fight to access treatment after finally receiving a diagnosis.
I have spoken with patients who spent years searching for answers while their symptoms worsened. Some were told their fatigue was simply aging. Others were misdiagnosed with heart disease, neuropathy, or unrelated conditions before finally learning they had amyloidosis — a rare and progressive disease caused by misfolded proteins building up in the body. Amyloidosis can take several forms and affects the heart, nerves, kidneys and other vital organs. Diagnosis is often complicated by both the disease’s multi-organ nature and variations in how patients respond to treatment. By the time many patients receive a diagnosis, they have often faced significant health and financial challenges.
Instead of quickly accessing the therapy their clinician recommends, many patients are forced into lengthy insurance battles. Prior authorization and step therapy are utilization management practices that can delay the care that patients need and introduce complications to their health. Some are required to try and “fail” on multiple medications before accessing the treatment their clinician originally prescribed. For patients with amyloidosis, delays in accessing treatment can have significant consequences, including disease progression.
As an advocate, I understand the importance of managing health care costs. However, cost-containment strategies should never come at the expense of medically appropriate care for patients with progressive illnesses. For those living with cardiovascular disease as a result of their amyloidosis, gene silencing treatments exist. However, in Michigan, individuals with amyloidosis with commercial insurance are facing significant access barriers. Both Priority Health and Blue Cross Blue Shield of Michigan currently have step therapy requirements in place before patients can access clinically appropriate treatments.
Patients living with amyloidosis deserve better. They deserve timely access to the treatments their clinicians believe are best for them. They deserve a health care system that values patient outcomes over paperwork requirements. And most importantly, they deserve the chance to focus on living their lives — not fighting their insurance company for the care they need.
