Cost of treatment

In 2012, I had the unpleasant experience of receiving unexpected out-of-network medical bills for a hospitalization in Florida. There was nothing I could do about it. At the time, I wasn’t aware of any laws that might have protected me. But I now know that Florida is among the…

The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…

AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology company, to help lower out-of-pocket prescription costs for specialty pharmacy patients. Medications attained through specialty pharmacies are those used to treat rare and chronic conditions in the U.S., and are often extremely costly. For…

When someone in your family has an illness, it can cause physical wear and generate an emotional and financial burden. The person who gets sick often loses their income but must pay medical bills in addition to regular bills. Even after being discharged from the hospital, a patient will…

Almost half of U.S. patients with neuromyelitis optica spectrum disorder (NMOSD) experienced relapses over a period of two years, according to an analysis of a large healthcare claims database. Such relapses — which lasted on average nearly 13 days — were treated more often with outpatient rather than hospital…

Enspryng (satralizumab), a therapy for adolescents and adults with neuromyelitis optica spectrum disorder (NMOSD), has been recommended for reimbursement through Canada’s public drug plans, if certain conditions are met.  Among the conditions established by the Canadian Drug…

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…

Because there is little information available about certain diseases, many people may be misdiagnosed or undiagnosed. People with rare diseases are at a disadvantage compared with people with well-known medical conditions. Not only do people with rare diseases have limited information, but also their treatment is often not as…

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…