Nearly 60 percent of the Virginians who've died from COVID-19 have come from the state's assisted living and nursing homes, but so far, state leaders have refused to identify which locations have outbreaks, citing privacy.
After hearing from many families struggling to get information from their loved ones' homes, the News4 I-Team launched a massive effort to compile that data through crowdsourcing.
For more than a month, the I-Team has asked viewers to assist in bringing transparency to the outbreaks in Virginia's long term care facilities — and the community responded.
Emails and calls flooded in from people who work in and around Virginia's nursing homes and assisted living facilities. Many families who are worried about their own loved ones living in facilities also contacted the I-Team wanting to help share information with others.
"Not providing the facts and transparency leads to a tremendous amount of anxiety for the families," said Jennifer Weiss, who contacted News4 after losing her mother to COVID-19 at a facility in Falls Church.
Elizabeth Brokamp's father contracted the virus at a facility in Springfield. She said she was notified when the first resident and a few staff got sick but then didn't hear anything else until her father was gravely ill. He died two days later.
"I think we really need to know more information so we have a full understanding of what our community is facing," Brokamp said. "At least you know what your loved one is facing, maybe you can help, or reach out one last time."
Both women told News4 they wished they were better informed about the outbreak at their parents’ homes.
Virginia is refusing to publicly release how many residents and staff have tested positive or died from COVID-19 in each of the 162 outbreak locations, citing their privacy. That leaves families with no way to verify if their loved one's home is telling them everything.
"I think there is no reason for any family member to be in the dark," said Melissa Andrews, president and CEO of LeadingAge Virginia, a not-for-profit association of older adult service providers around the commonwealth.
Andrews said she urged her 131 members to be transparent with residents and families, but she also understands why many facilities are reluctant to share numbers publicly.
"I do think there is a fear that they are going to be labeled a bad provider," Andrews said. “I think it's really easy for people to make nursing homes the enemy in this pandemic."
She said just because a facility has an outbreak does not mean someone was at fault.
"Nursing homes care for people who are really, really sick. They have multiple chronic conditions and a fairly high percentage of the people in our care have do not resuscitate orders," said Joe DeMattos, president of the Health Facilities Association of Maryland.
Maryland's governor decided weeks ago to reverse his state health department decision and release facility-specific numbers. Washington, D.C., leaders have also released facility-specific information.
The number of cases and deaths among residents and staff of Maryland and D.C. facilities has been posted on an NBC Washington map for weeks. Now, the I-Team has worked to include at least 113 facilities in Virginia.
Coronavirus Cases & Deaths in Long-Term Care Facilities
COVID-19 cases and deaths in long-term care facilities in D.C. and Maryland.
"We advocate for transparency and knowledge, but you also have to understand context," said DeMattos.
For example, some of the Virginia data now included on the News4 map has come from the facilities themselves, in an effort to be fully transparent. Some facilities that are not listed may be because they haven't publicly disclosed cases, not because they haven't had any.
The map uses grey dots to indicate the locations where a relative or worker contacted the I-Team about positive cases, but the facility declined to confirm or did not respond.
Some of the included outbreaks were only confirmed by the health department early on, since they were so severe. The state has since denied the I-Team’s repeated requests for location names, using an interpretation of Virginia law to consider a long-term care facility to be "a person" requiring privacy.
"On a daily basis they should have been informed," said Jessica Forbes, whose mother was a nurse at an Alexandria care facility and died of COVID-19.
"I know for a fact she was not getting that information on a daily basis," Forbes said. "She was so worried about getting this."
So was Jim Sanders, a resident of a facility in Burke.
"They wouldn't answer or tell you about the virus and what was going on," Sanders told News 4. "How many [cases] have we got here?"
Andrews said naming the facilities with outbreaks could help keep staff who work in multiple locations from spreading the virus. She said her organization has been pushing for the state to at least share the facility-specific data among the provider community.
"I wish we weren't having to have this conversation because I wish that all providers were just giving this information out," Andrews said.
Crowdsourced data is typically incomplete, and the numbers represent a snapshot, because they change daily. But the News4 map can now offer information for families looking to see which facilities have had positive cases and how much they are communicating with the public.
"I think it encourages all of us to ask those questions on the front end, and it'll be a part of people's decision-making when they're going to place a loved one in a nursing home or an assisted living facility," said Seema Verma, administrator of the Centers for Medicare and Medicaid Services.
CMS is the federal agency that regulates nursing homes and has advocated for transparency during this pandemic. Starting this weekend, nursing homes nationwide will be required to report their number of COVID-19 cases and deaths among residents and staff to the Centers for Disease Control and Prevention.
The CDC plans to analyze and share that information with CMS, which will then post it publicly. Verma told the I-Team that online information will only include nursing home data, since assisted living facilities are state-regulated. She expects it to be available by the end of May.
"We know that patients and their families really want this information," Verma said. "So we're committed to not only being transparent, but to do this as quickly as possible."
Reported by Jodie Fleischer, produced by Rick Yarborough, and shot and edited by Steve Jones.