A close friend recently asked where she fits in the COVID-19 vaccination plan. She is the primary caregiver for her mother, providing round-the-clock care and emotional support—but is she a health care worker? To qualify for priority vaccination, she would need official documentation. But could she get it? Even if she could, my friend expressed ethical concerns about “jumping the line.”

She's not alone. About 53 million family members and friends provide care to loved ones in the United States, representing a critical element of the long-term care system. They not only help to feed, bathe, and dress their loved ones, they also routinely perform health care tasks like administering medicine, coordinating care, and monitoring the physical, social, and mental wellbeing of patients. In a recent survey (PDF), about half of family caregivers said that they perform at least one type of medical or nursing task. Despite this, they are often overlooked members of the health care community.

In its vaccination priority guidelines, the National Academies of Sciences recommended taking an expansive definition of health care workers that includes unpaid family caregivers. Yet only three states explicitly mentioned family caregivers in their initial vaccination plans. To some extent, this is being remedied. In early February, at least eight other states offered additional guidance or clarification on where family caregivers fall within their vaccination plan. Still, the information can be vague, inconsistent or difficult to find. This has left people like my friend wading through myriad websites and documents trying to figure out where they stand.

But the situation also highlights a more fundamental gap in the health care system. Family caregivers are not integrated as part of a patient's health care team. Just as they are being left out of the vaccination conversation, they will be left out of other policy decisions until this critical role is formally recognized.

Read the full article about family caregivers by Esther Friedman at RAND Corporation.