Covid-19 response ignores patients with rare diseases
by Michael Cook | 27 Sep 2020 |
Another overlooked population in the Covid-19 pandemic is patients with rare diseases. In a BMJ blog two scientists, from the US and the UK, complain that many “patients with a rare disease [are] facing potentially serious health inequalities during the pandemic, in addition to the insufficient provision and care inadequacies they were already facing before covid-19”.
They point out that “75% of those affected by rare diseases are children who are medically fragile and suffer from complex medical challenges. Rare diseases are predominantly chronic in nature, arise from genetic causes, and are often life-threatening. Despite the fact that there are more than 7000 rare diseases affecting around 350 million people worldwide, and in the UK there are approximately 3 million people affected by rare illness, this population has not yet received the attention from society and the medical community that it requires, or deserves.”
During the pandemic, many patients felt isolated and in the dark, unsure about whether and how they should isolate.
They conclude: “To emerge from the covid-19 pandemic as a stronger society than we were before it, we urgently need to unite rare disease organisations’ resources with mainstream medical care so that we do not leave our most vulnerable patients behind.”
Michael Cook is editor of BioEdge
Judge Amy Coney Barrett gave a gracious acceptance speech after being nominated by President Trump to the US Supreme Court. “The flag of the United States is still flying at half staff in memory of Justice Ruth Bader Ginsburg to mark the end of a great American life,” she said. “She not only broke glass ceilings, but she smashed them. She was a woman of enormous talent and consequences and her life of public service serves as an example to us all.”
It was a moving tribute to RBG, but ACB is expected to help shift SCOTUS in a very different direction – more conservative, and above all, more sceptical of abortion. As I wrote before, bioethics is “at the very centre of this strange election”.
Michael Cook
Editor
It was a moving tribute to RBG, but ACB is expected to help shift SCOTUS in a very different direction – more conservative, and above all, more sceptical of abortion. As I wrote before, bioethics is “at the very centre of this strange election”.
Michael Cook
Editor
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