Between 25 and 30 million Americans have a rare disease, many of whom are disproportionately at risk of getting sick from COVID-19. According to the Centers for Disease Control and Prevention, in addition to older adults, people of any age who have serious underlying medical conditions like chronic lung disease or asthma, serious heart conditions, diabetes, cancer, or weakened immune systems might be at great risk for COVID-19.
Consequently, it is the rare disease population that might need aggressive and direct intervention to survive COVID-19. However, in some areas of the country, despite social distancing, hospital systems are becoming overwhelmed. States and hospitals are considering worst-case scenario planning to guide health care providers, in the event that they are forced to make decisions about how to allocate scarce resources and medical equipment decisions that no providers would ever want to have to make. The National Organization for Rare Disorders (NORD) has learned that, in developing this guidance, some states and hospitals are considering crisis standards of care or triage plans that could discriminate against people with underlying medical conditions.
There is no “one size fits all” when living with or treating rare diseases. Many rare diseases are heterogeneous, with the severity of the disease manifestation often depending on genetic mutations and other factors. Moreover, there is often limited research, information, and expertise on these diseases. Because of this, misunderstandings and biased assumptions about morbidity, mortality, and quality of life associated with rare diseases could lead to discriminatory practices in a triage situation.
However, rare disease patients have laws that protect them. Under the Americans with Disabilities Act (ADA), civil rights protections are extended to the vast majority of those with rare diseases, who may have visible or invisible disabilities. ADA defines a disability as “an impairment limiting an individual’s major life activities, and major life activities include the operation of major bodily functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, reproductive functions, and possibly others.” Moreover, the ADA provides this anti-discrimination protection of an actual or perceived impairment regardless of whether the impairment limits or is perceived to limit a major life activity. In other words, for most people living with a rare disease, it doesn’t matter how sick or healthy you are, the law is intended to protect you from discrimination.
NORD joined over 400 patient and advocacy groups representing millions of Americans living with serious, acute, chronic, and rare diseases to call on the Department of Health and Human Services (HHS) to ensure patients’ rights to access health care resources and treatment for COVID-19 and underlying health conditions are preserved and protected, even amidst health care rationing. Although HHS’s Office of Civil Rights issued some initial guidance, the letter urges that office to go further to issue additional guidance to states and health care providers to ensure that COVID-19 triage plans comply with federal nondiscrimination laws, including the ADA – meaning triage plans cannot discriminate based on disability or age.
At the state level, NORD has been monitoring this issue as states are in the process of developing guidelines for entities within their jurisdiction. For instance, NORD joined patient and advocacy groups in a letter to the Governor of Kansas to express concerns over a “Toolkit for COVID-19” issued by the Kansas Department of Health and Environment that could have discriminated against people with rare diseases.
NORD believes it is critical to ensure that the voice of the rare disease community is heard on this important issue. You can count on us to continue to monitor activities at the federal and state levels to protect the rights of the rare disease community.