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National cancer institute rounded min

Rare Diseases as Pre-Existing Conditions

Publication date: 11 Dec 2020

Most rare diseases are “pre-existing” conditions. Depending upon where you live and your financial circumstances, this may disqualify you from health insurance benefits and continuous medical treatment. At face value, this is an absurdity. Many diseases, not just rare ones, manifest themselves over years. This includes cancer, heart disease, diabetes, high blood pressure, allergies to name a few. Initiating treatment of such diseases at their most acute symptomatic phase is often too late and ignores the fact that preventative measures could have been taken.  


Rare diseases of genetic origin are present at birth, although they may not become apparent until years later. Some manifest themselves in early childhood. Some, such as Huntington’s Disease, may take 40 years to develop. For rare disorders, diagnosis often may come later in the disease process. For many, obtaining an accurate diagnosis for a recognized disease is an elusive goal. For others, this is unattainable given the current state of medical knowledge.  Further, even for those with a diagnosis, understanding where they may stand in the spectrum of disease symptoms and severity can be difficult. One size doesn’t fit all.  


Good healthcare requires a long term perspective and must acknowledge the patient’s changes over time. Many people are born with pre-existing conditions, and many have chronic conditions that persist indefinitely. As everyone ages, healthcare needs shift and access to preventative care gains in importance. Fluctuating, short term healthcare coverage cannot always accommodate this long term need.


Why is it even debatable that pre-existing conditions should be part of any health coverage plan? Insurers, as businesses, ultimately need to manage their financial liability to stay viable.  For those familiar with annual open enrollments for health care coverage, it makes sense for private insurers to have fewer patients for which there may be large health care payouts during each fiscal year. Hence, excluding people who are likely to incur such expenditures may lower their financial risk. Health insurance, whether from private or government sources, depends on the concept of a shared buden spread over a large population. It is an unwritten social contract, where the healthy help pay for the sick, and the young help pay for the old. Inevitably, someday, others will pay for you. It is not free.  


To insure pre-existing conditions, it may make sense to move away from year-by-year health coverage to some form of long term continuous coverage to remove incentives for short term risk management.  Legal mandates to require covering pre-existing conditions may be an interim solution.  Even then, without a provision for universal coverage, most likely from government support, health insurance may be available only to those who can afford it.


While some of these approaches are already being practiced in many countries, particularly those with government sponsored healthcare systems, the U.S. is still trying to find its way.  Ostensibly, there is bipartisan support for the idea of covering pre-existing conditions. The ways and means for achieving this goal, however, remains contentious. With the upcoming change in administrations, it is likely that the Affordable Care Act will remain and probably be strengthened to codify coverage for pre-existing conditions. Yet, with a closely divided Congress, aspects of the status quo, where many remain uninsured with no coverage will still likely exist. Further, amidst a COVID-19 pandemic, many broader healthcare problems will likely be ranked as lower priorities until the crisis is over. Until there is a broader consensus to cover everybody, some with pre-existing conditions from rare diseases will undoubtedly be left behind.