Advocates Ask that the Same Effort Used for COVID Drug Discovery Be Used for Rare Diseases

Dr. Christopher Austin, a National Institute of Health Director for Transitional Sciences, spoke at last year’s virtual conference honoring Rare Disease Day. According to an article in the NIH Record, Dr. Austin commented that COVID-19 has caused extreme difficulty for people with rare diseases. However, Dr. Austin acknowledged that there are aspects of COVID discovery that formed techniques and policies which could accelerate progress in rare disease research.

Rare Disease Statistics

Dr. Austin reported that collectively, rare diseases affect about thirty million people in the United States and roughly eight percent of the worldwide population. Yet less than five percent of rare diseases have treatments that have been approved by the FDA.

He emphasized that there should be no difference between COVID patients and patients with rare diseases. The lives of both are of equal value. If we moved with lightning speed to treat COVID patients, that same effort should be applied to patients with rare diseases.

COVID And Neurodegenerative Diseases

Proof of COVID’s devastation has been reported in thousands of studies over the past few years. However, there has been limited data about its impact on neurodegenerative diseases.

Looking back to March 2021, 224 countries and territories have been affected. At the time, the WHO reported over 118,000,000 cases resulting in 2,600,000 deaths worldwide.

The fatality rate is highest among the elderly population with thirty-six percent affected by neurodegenerative diseases. Therefore, the elderly are more at risk for COVID-19.

Looking Forward

 Dr. Austin said that researchers are attempting to find similarities in various diseases, hoping to develop interventions that will treat multiple diseases at the same time.

They are working on models to predict a patient’s reaction to treatment as well as designing clinical trials that call for fewer participants.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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