TY - JOUR

T1 - Rare cancers—Rarity as a cost and value argument

AU - Graf von der Schulenburg, J. Matthias

AU - Pauer, Frédéric

N1 - Publisher Copyright: © 2016 Elsevier Ltd Copyright: Copyright 2017 Elsevier B.V., All rights reserved.

PY - 2017/3

Y1 - 2017/3

N2 - Here is a paradox in medicine: rare diseases are unusual, but developing a rare disease is quite frequent. This is also true for rare forms of cancer. Almost every 20th person in the world suffers from a rare disease, and about one quarter of all new diagnosed cancers belong to rare cancers. The downside of rare diseases for patients is the difficulty to find the right institution for their treatment, for health care payers it is the costly treatments, and for medical professionals their limited knowledge if they are not specialized in the disease in question. On the other hand, the upside for clinical researchers is that rare diseases are beneficial for their scientific careers, as many clinical and scientific questions are still open. The advantages for the pharmaceutical industry are the premium prices, the special governmental programs to stimulate research, and achieving a dominant position in a small market. To sum up, rare cancers are important for all stakeholders in medical care and deserve more attention from public health research.

AB - Here is a paradox in medicine: rare diseases are unusual, but developing a rare disease is quite frequent. This is also true for rare forms of cancer. Almost every 20th person in the world suffers from a rare disease, and about one quarter of all new diagnosed cancers belong to rare cancers. The downside of rare diseases for patients is the difficulty to find the right institution for their treatment, for health care payers it is the costly treatments, and for medical professionals their limited knowledge if they are not specialized in the disease in question. On the other hand, the upside for clinical researchers is that rare diseases are beneficial for their scientific careers, as many clinical and scientific questions are still open. The advantages for the pharmaceutical industry are the premium prices, the special governmental programs to stimulate research, and achieving a dominant position in a small market. To sum up, rare cancers are important for all stakeholders in medical care and deserve more attention from public health research.

KW - Cancer

KW - Cost

KW - Health care systems

KW - Rare diseases

UR - http://www.scopus.com/inward/record.url?scp=85009152849&partnerID=8YFLogxK

U2 - 10.1016/j.jcpo.2016.09.004

DO - 10.1016/j.jcpo.2016.09.004

M3 - Article

AN - SCOPUS:85009152849

VL - 11

SP - 54

EP - 59

JO - Journal of Cancer Policy

JF - Journal of Cancer Policy

ER -