Advocates for the elderly reacted tepidly to the new steps the Trump administration announced over the weekend to improve transparency about the mounting death toll the novel coronavirus is exacting on nursing homes, saying more needs to be done immediately to save lives and to get vital information to loved ones.
The administration "should have done this after the outbreak in Washington [when it took hold in March] and they need to step up and do more. There's more information that needs to be provided to families," said Carol Herman, president of the Foundation Aiding The Elderly.
Richard Mollot, who heads the Long Term Care Community Coalition, called the new federal mandates for nursing homes to report viral outbreaks and fatalities a “positive step” that remains “short on details.”
“It is open season on nursing home residents,” Mollot told ABC News in an email Sunday night. “I am, frankly, nauseated to think about what nursing home residents are, unnecessarily, experiencing as I write.”
Nursing homes have become a focal point for illness and death from the novel coronavirus outbreak, with more than 7,300 fatalities in 19 states occurring in elder care settings, according to data reported by those states and gathered by ABC News. Adding to the emotional strain, families have said they've had trouble getting basic information from some homes.
Late Sunday, in response to the growing crisis, the Trump administration announced new rules requiring nursing homes to alert the Centers for Disease Control and Prevention when residents test positive for coronavirus, as well as inform residents and their families. They're also mandated to report fatalities from the virus.
Seema Verma, administrator of the Centers for Medicare & Medicaid Services which regulates the nation's nursing and long-term care, said the agency wants to ensure those facilities are “providing transparent and timely information to residents and their families.”
“Nursing home reporting to the CDC is a critical component of the go-forward national COVID-19 surveillance system and to efforts to reopen America,” Verma said over the weekend.
On a call with reporters Monday, Verma said her agency wanted to get the information to patients and family "right away." The agency also plans to make the data publicly available, though there has been no indication when or how that would occur.
The scant information available about nursing home outbreaks had been a source of concern among lawmakers in recent days, because as clear as it was that the virus was taking a devastating toll, consistent data on the issue has been cloudy at best.
A number of states, including New York, New Jersey, Massachusetts and Pennsylvania have reported that a significant percentage of fatalities were occurring in nursing homes. In Massachusetts, for example, nursing home deaths are estimated to account for approximately half of the state's total coronavirus deaths. But other states have provided little or no information about the clusters forming in those settings.
“The lack of uniformity across states in COVID-19 data collection practices makes it difficult to get a true picture of the full impact of this crisis,” wrote Sen. Charles Grassley, an Iowa Republican, in a letter to Verma last week. “Given the lack of consistently reported data, I encourage you to exercise additional leadership in this area.”
Democratic Sen. Ron Wyden of Oregon made a similar plea, writing on Twitter Monday that “there’s a national tragedy unfolding in America’s nursing homes. The first step towards getting these deadly outbreaks under control is knowing where they‘re happening in real time.”
Verma said Monday the data could help broader communities identify outbreaks sooner, with nursing and long-term facilities as a potential "early predictor" of local outbreaks.
"It gives us the ability to do that contact tracing not only for whoever was impacted in the nursing homes, but also has an impact on mitigating the spread of the virus inside the community," she said.
Advocates for the elderly said that type of information, in addition to aiding response strategies, will be helpful for relatives to keep tabs on conditions in the facilities where their loved ones are living.
“If people are alerted as to what facilities have coronavirus patients, it would certainly help,” Herman said.
Robyn Grant, an advocate with the National Consumer Voice for Quality Long Term Care, said the new information can help alleviate worry or, alternatively, allow residents and family members to make informed decisions that are best for them, including whether to seek alternative placement, or even to try to bring a resident home from the facility.
But she said federal regulators need to also make sure the data being reported to CDC includes not only the number of COVID-related deaths, but additionally the total number of all deaths – so they can “identify facilities that need immediate state and federal intervention.”
“And [the agency] must also hold facilities accountable,” Grant said. “Failure to comply with these reporting requirements must result in enforcement actions, or we will not obtain the data needed to save residents lives.”
The American Health Care Association and National Center for Assisted Living, organizations that represent more than 14,000 nursing care facilities, said the organizations share the goal of containing the virus.
“This announcement reinforces much of what long term care providers are already doing and are currently required to do in their states,” said Mark Parkinson, president and CEO of the organizations. “Long term care facilities support transparency to our residents, families and other stakeholders because knowledge is pivotal during a pandemic and our public health officials need to know where to send urgently needed resources.”
Nursing home officials, like Mutty Scheinbaum, who owns the 500-bed facility in Andover, New Jersey where more than 60 residents have died, have described what they say are "heroic" unseen efforts going on inside the homes to try and prevent loss of life. The staff has "been working relentlessly to contain the virus and safeguard our residents and staff," Scheinbaum said in a statement.
"It's been really, really tough," said Dr. Jim Wright, the medical director at the Canterbury home near Richmond, where 49 residents died over three weeks. "Patients were crashing and dying."
Canterbury has been reporting case number updates regularly to the Virginia Department of Health through the county health department, the facility said. Canterbury administrator Jeremiah Davis said it would follow government requirements as they evolve. According to Davis, Canterbury’s medical director contacts families of residents who test positive for COVID-19 directly, and all Canterbury families receive daily email updates. The facility also has a dedicated phone line for families with questions.
In recent weeks, members of the National Guard have been assisting nursing home staff in several states by conducting test screenings for hundreds of facilities. As for the additional information, officials at the CDC said the new requirements should, first and foremost, bring in data that will enable them to respond more effectively to new clusters of the virus.
“This coordinated effort … will allow CDC to provide even more detailed information to state and local health departments about how COVID-19 is affecting nursing home residents in order to develop additional recommendations to keep them safe,” said CDC Director Dr. Robert Redfield.