As a winter surge in respiratory virus among young children reveals the troubing truth about how healthcare systems in the U.S. treat children with rare diseases, the National Public Radio (NPR) presents an in-depth look into the nationwide epidemic.
For years, parents of children with rare diseases have had to fight for their access to proper health treatments. Despite the Affordable Care Act (ACA) referencing ‘rare diseases’ in its language, the lack of health coverage means that medical bills are ballooning. Unfortunately, since these are typically chronic illnesses, the costs are not easily manageable and many families are drowning in debt.
Part of the reason why these children struggle with access to healthcare, is the lack of available therapies. Only 5% of the 7,000 rare diseases discovered have some form of treatment and fewer get regular updates and innovative therapies. Many family’s may be unaware that they’re eligible for assistance and therefore never receive the medical help their child needs.
Additionally, since rare diseases are so rare, there’s a shortage of medical professionals trained to diagnose and treat them. A number of parents reported that their child was diagnosed with the wrong disease, due to the lack of expertise, leading to a delay in their treatment and forcing them to go to multiple doctors to receive a correct diagnosis.
The winter’s resurgence in respiratory viruses has shown us the hardships of those struggling with these rare diseases. With the winter season coming to an end, the hope is that families with rare-disease patients will get the much-needed assistance. [ad_1]
Following a surge of respiratory viruses early this winter season, lots of kid’s hospitals are lastly returning to standard. But up coming time they surge, beds for young patients could once more be challenging to arrive by.
Copyright © 2023 NPR. All legal rights reserved. Take a look at our web-site conditions of use and permissions internet pages at www.npr.org for even further details.
NPR transcripts are established on a hurry deadline by an NPR contractor. This text may possibly not be in its last form and may be updated or revised in the upcoming. Precision and availability may possibly change. The authoritative document of NPR’s programming is the audio record.