Donna Barnett doesn’t know what is happening at Drake Terrace, a large San Rafael assisted living facility where her 90-year-old father lives, even after two weeks of frantic attempts to find out.
On March 27, she said, the facility emailed a letter to family members disclosing that a resident had tested positive for the new coronavirus.
“Learned first (hope last!”) coronavirus positive resident at Drake Terrace,” Barnett wrote in her journal that day. “Took it like a gut punch. I’m sad, scared.”
Over the next few days, the situation grew muddier. The facility, which cares for 115 residents and employs 110, told families that a staff member had tested positive but provided few details. And an official with Drake Terrace’s parent company, who also spoke to The Chronicle, told Barnett that the facility lacked coronavirus testing kits, she said.
“I don’t know if there’s some secrecy around this?” Barnett told The Chronicle. “I don’t understand. … I’m getting incomplete information.”
Since February, when the coronavirus raced through a senior-care facility in Washington state, killing 37 people, it has been clear that the virus poses a deadly threat to nursing-home residents and their caretakers.
Still, two months later as outbreaks infect hundreds and kill dozens at Bay Area nursing homes, senior living centers remain dangerously unprepared and poorly equipped. Many facilities are also leaving families and the public in the dark about the severity of the threat — and so are several Bay Area counties, which either didn’t respond to requests for data about the outbreaks or declined to share the information with The Chronicle.
The lack of transparency has confounded health care experts, legislators, nursing home staff and resident advocates, who say secrecy during a pandemic is harmful to public health and deprives people of crucial information — particularly families who might want to move their loved ones out of facilities that are experiencing outbreaks.
On Friday, with frustration boiling over, a group of UCSF medical professionals wrote to San Francisco Mayor London Breed, criticizing the city’s “lack of action” on the nursing-home problem and calling for broader testing of residents and more transparency to prevent “unnecessary suffering and deaths.”
“It’s not fair to hide this,” said Charlene Harrington, a professor emeritus in the UCSF School of Nursing, who signed the letter.
Gov. Gavin Newsom, under pressure to release more information about the spread of coronavirus, published the first statewide tallies of cases in long-term care facilities on Friday. The state has confirmed that 1,266 residents and staff members are infected with the virus at 191 different nursing homes across California.
A Chronicle analysis found more than 380 coronavirus cases and more than 15 deaths linked to nursing homes across the Bay Area, based on news reports and counts from some county officials. Many of those cases came to light over the past 10 days — often without details on how the outbreak started or even when the deaths occurred.
Of the six counties with reported cases in such facilities, only San Francisco, Contra Costa and Santa Clara counties have disclosed how many they have.
Santa Clara revealed Friday that 164 people at long-term care facilities in the county have tested positive for the coronavirus, including 50 employees. Dr. Sarah Rudman, a county health officer, said in a press conference that the county has supported nursing homes by deploying a special team to help with their needs and provide testing.
Alameda, Marin and San Mateo, however, have refused to share similar information.
“Cases have been reported to the media by the facilities themselves, but we are not confirming or commenting on them,” said Preston Merchant, a county health spokesman for San Mateo, where The Chronicle found at least 10 cases and three deaths in long-term care facilities.
Cases at long-term care facilities have ballooned in the last week, driven by large outbreaks at several nursing homes around the Bay Area. More than 100 cases, including nine deaths, have been linked to Alameda facilities, while at least 80 cases and two deaths have been reported in Contra Costa County.
Meanwhile, the federal government has not released tallies of cases within nursing homes. Relying on media reports and information from some state health departments, the Associated Press recently counted nearly 2,300 coronavirus infections and at least 450 deaths linked to the nation’s nursing homes and long-term care facilities.
These numbers, however, are likely vastly lower than the true count. Experts say no one really knows how widely the virus has infiltrated nursing homes due to a lack of transparency — and widespread testing.
Faced with a shortage of tests, the Centers for Disease Control and Prevention has issued evolving guidance to stop outbreaks that relies heavily on screening people for symptoms. The recommendations include restricting visitors, canceling group activities, having staff wear protective gear and, if there are already coronavirus cases in the facility, requiring everyone to wear masks.
But the continued wave of outbreaks suggest that these measures were either implemented too late, or weren’t comprehensive enough to keep the virus from spreading. Visitors to the facilities may have introduced the virus before access was restricted, or infected employees may have brought the virus inside without knowing they were infected.
Health experts, nursing home staff and advocates for residents also told The Chronicle that not all nursing homes have been following the CDC guidance, which has been impractical for some facilities that lack protective gear and other resources needed to fully isolate residents.
Staff members at some facilities have been sounding the alarm for weeks. At Laguna Honda, San Francisco’s huge city-run nursing home with 750 residents, employees noticed in February and March that there weren’t enough N95 respirators, surgical masks, disposable shoe covers and basic cleaning supplies, staff told The Chronicle. The San Francisco health department has said Laguna Honda staff have the protective gear they need. There are now 17 confirmed COVID-19 cases at Laguna Honda.
The CDC’s recommendations have also lagged behind the latest research, which shows that infected people who don’t have symptoms are a probable source of transmission within nursing homes and that the safest approach likely involves testing everyone.
“To protect staff and to protect residents, having the availability of widespread testing is absolutely vital,” said Dr. Alison Roxby, an infectious disease expert at the University of Washington who investigated an outbreak at a Seattle-area retirement community and discovered that residents without symptoms were infected.
“Everyone recognizes that we are not going to get a handle on this epidemic until we can get a handle on these facilities, which comes down to testing,” she added.
Some counties are now moving toward widespread testing at nursing homes — an acknowledgment that the lack of testing has left them blind. On Thursday, Los Angeles announced that a new rapid mobile testing team would be deployed to nursing homes. Officials with King County, Wash., announced that more than 20,000 test kits would be distributed to local health care workers and people who live and work in group settings like nursing homes.
Rep. Jared Huffman, who represents Marin County and five others in Congress, said the testing shortfall has frustrated lawmakers and forced nursing homes and health departments to ration their limited tests.
“If you had enough tests, you’d obviously be testing every staffer and every resident in a nursing home,” Huffman said. “But we’ve also got health care workers, we’ve got people in hospitals. How can you say they shouldn’t also get tests?”
Jaime Patiño, a Union City councilman, said his 84-year-old grandmother lives in Gateway, Care & Rehabilitation Center in Hayward where at least 66 people have been infected and nine people have died. He said he had been given scant information, and only found out about the severity of the outbreak from the news.
“The families need to know because that’s their loved one in there and they need to be reassured,” said Patiño, who has only been able to visit his grandmother through the facility’s window for the past few weeks.
The virus moves quickly, and without testing, the results can be disastrous. On March 25, Larry Kass got a call from Gateway, his father’s assisted living facility. The staffer said a resident had been sent to a local hospital with COVID-19 symptoms but everyone else seemed fine. The staffer “said they had checked all the residents, including my father, for symptoms, and my father had come up clear,” Kass recalled.
Gateway wasn’t administering coronavirus tests. The next day, Kass spoke to his father, Alby, on the phone; Kass noticed that Alby was coughing a little. The day after, Alby’s condition worsened. He was taken to a San Leandro emergency room. On March 31, Alby Kass died of COVID-19.
Many of the facilities confronting deadly outbreaks also have struggled in the past to provide quality care, racking up violations from state regulators for flouting rules intended to stop the spread of infection. Advocates for nursing home residents say these violations, which come with minimal fines, amount to little more than a slap on the wrist.
Poor oversight by regulators has “taught the nursing home industry to not take infection control seriously, and now our parents and grandparents are paying the price,” said Mike Dark, an attorney with California Advocates for Nursing Home Reform. “Nobody should be surprised that, even if the rest of the state is flattening the curve, nursing homes have become viral bomb sites.”
Donna Barnett said she is grateful for the “phenomenal care” her father has received over the last six years at Drake Terrace in San Rafael, where he lives in an apartment with his wife. He suffers from Parkinson’s disease; a former administrative law judge for the California Public Utilities Commission, he worked until he was 84.
When Barnett talked to staff about the virus, she got the sense they were doing their best in a difficult and fluid situation, and she was glad that her father’s apartment had been placed under quarantine.
Still, she worried when she learned that Drake Terrace didn’t have test kits or a plan to test everyone. She had read about the nursing home in Washington where people without symptoms spread the virus, and she kept thinking about her father, who needs daily assistance from staffers — what if one of the people helping him was infected and didn’t know it?
“The big issue has been testing,” Jerry Church, an operations specialist for the facility’s parent company Kisco Senior Living, told The Chronicle on Tuesday. “Right? Knowing what we’re dealing with … Get us the frickin’ tests.”
Church said that after March 27, when the facility confirmed its first coronavirus case, a few other people were tested, but officials were told it would take 14 days to get results. It is unclear where the tests were being performed. A spokeswoman for Marin County said that Drake Terrace never referred anyone to the county to receive testing.
According to figures provided Wednesday by a Kisco spokesperson, there are now seven coronavirus cases at Drake Terrace — more than Donna Barnett was aware of. Five residents and two staffers have tested positive; Barnett said the home had not notified family members of the total.
Also, those seven infected people at the facility are the only ones there who have been tested. All seven were showing symptoms of COVID-19, all seven tested positive, and as of Wednesday, no one else had gotten a test, even though 225 people live and work at Drake Terrace.
On Tuesday, Church said, Marin County officials and physicians from Kaiser Permanente visited Drake Terrace and offered support and resources. “There’s a good synergy,” Church said. But he did not say how many coronavirus tests the facility will now perform — and he insisted that to test everyone there would be “overkill.”
Church did not respond to a subsequent text message and voicemail asking for clarification. In a statement emailed Wednesday, the executive director of Drake Terrace, John Meyer, said the facility has “stringent protocols in place to help prevent the spread of the virus.” On Thursday, Meyer sent a new letter to Drake Terrace families, reporting that one of the infected residents has fully recovered, leaving six active cases. He added that the facility has no plan for widespread testing and claimed that such testing “is neither recommended nor possible.”
The following day, Friday, Barnett was able to video chat with her father, using their phones.
“Dad doesn’t talk much because of effects from Parkinson’s,” she told The Chronicle in an email, “but today he softly said, ‘You look pretty.’ It made me feel good to hear Dad’s voice, see and be seen, and most importantly, connect.”
Jason Fagone, Cynthia Dizikes and Trisha Thadani are San Francisco Chronicle staff writers. Emails: firstname.lastname@example.org, email@example.com and firstname.lastname@example.org Twitter: @jfagone, @cdizikes @TrishaThadani