Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist

Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist

Publication date: Mar 12, 2019

But rare diseases and the expensive therapies needed to treat them – particularly in an age of scarce economic resources – almost always entail -tragic choices,” warned Avraham Steinberg, MD, an Israeli pediatric neurologist and Talmudic scholar at Jerusalem’s Shaare Zedek Medical Center. Steinberg argued that modern medicine has brought about an enormous increase in life expectancy, and that people with serious chronic diseases, as well as disabled newborns, now can make it into adulthood with the help of very expensive therapies and medicines. Other problems arise, for instance, when a patient is diagnosed with a serious illness but refuses treatment, or another one has a terminal disease and wants to -die with dignity,” but his family opposes the decision. That, Steinberg said, means how to distribute healthcare when drugs for rare genetic illnesses, such as spinal muscular atrophy or Batten disease, can cost $700,000 a year. It’s the fundamental right of every citizen to receive every medical treatment that he deserves, according to his individual condition,” Steinberg said. If two treatments are equally effective, but one is cheap and the other expensive, -everyone understands that you should go for the cheap,” said Steinberg, though he emphasized that the lives of rare disease patients are just as important as people with diabetes or hypertension. The post Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist appeared first on Huntington’s Disease News. The post Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist appeared first on BioNewsFeeds.

Concepts Keywords
Abortion Dialysis
Antibiotics Medicine
Ashkenazi Rare disease
Austria Avraham Steinberg
Bioethicist Applied genetics
Bioethics Medical ethics
Chronic Diseases Bioethics
Congress Epidemiology
Diabetes Academic disciplines
Dialysis Machines Social philosophy
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Fertility Dialysis
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Huntington Healthcare drugs
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Semantics

Type Source Name
disease MESH fetus
disease DOID Tay-Sachs disease
disease MESH Tay-Sachs disease
gene UNIPROT FBXW7
disease MESH chronic diseases
gene UNIPROT TNFSF14
gene UNIPROT ERAL1
disease MESH genetic diseases
gene UNIPROT ESR1
disease MESH infectious diseases
gene UNIPROT ARID1A
gene UNIPROT CEP55
drug DRUGBANK Water
gene UNIPROT SLC35G1
disease MESH Rare Diseases
gene UNIPROT CNTN2
gene UNIPROT LARGE1
gene UNIPROT SSRP1
disease DOID hypertension
disease MESH hypertension
disease DOID Batten disease
disease DOID spinal muscular atrophy
disease MESH spinal muscular atrophy
gene UNIPROT YES1

Original Article

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