A Rare Disease Captures the World’s Attention

October 26, 2021

A rare but devastating disease is finally getting its due. With the designation of a World Amyloidosis Day, the advocacy community makes an important move toward greater awareness.

Raising awareness of amyloidosis is a vital first step to getting patients diagnosed sooner. Early diagnosis, in turn, gives patients the best chance at proper treatment, which can slow the incurable disease’s progression and provide relief from its symptoms.

There are multiple forms of amyloidosis, which is caused by a buildup of abnormal proteins. Symptoms like fatigue and shortness of breath may mimic other conditions. Additionally, its inconsistent presentation can make the disease difficult to diagnose, which can lead to misdiagnosis. Collectively, these challenges can cause patients to go several years before being accurately diagnosed. The progressive disease, meanwhile, continues attacking vital organs like the brain, kidneys and heart.

Treatment Access Challenges Mirror Diagnostic Challenges

Despite the existence of several available treatments, accessing them can be difficult.

Both public and private health plans are known to have inadequate coverage, which can leave patients with unaffordable out-of-pocket costs. Patients covered by Medicare, for example, are often required to pay their entire annual deductible at one time because their monthly out-of-pocket cost for medication exceeds that amount.

Insurers, including the Veterans Heath Administration, are also known for enacting onerous coverage restrictions and step therapy protocols that delay patients’ access to the treatment their doctor prescribed. Inconsistent VA policies can also make it hard for some patients to get the right medication for treating their presentation of the disease.

The Debut of World Amyloidosis Day

The inaugural observance, led by the Amyloidosis Alliance, will be recognized by patient advocacy organizations, including the Alliance for Patient Access, in 18 countries. They will mark the occasion by sponsoring activities aimed at boosting awareness of amyloidosis and advocating for timely access to treatment.

Recognizing World Amyloidosis Day is an important step toward bringing a longer and better quality of life within reach for patients of the rare, debilitating disease.

Tags:

Categorized in: