‘SUPER HIGH RISK’
Shots elude younger Marin residents with medical issues
Sausalito resident Andreas Bengough has a degenerative neurological disease that has compromised his immune system and requires him to use a ventilator 12 hours each day, but he can’t get access to a coronavirus vaccine.
“That puts him at super high risk of potentially dying if he contracts COVID-19,” said Pauline Zamora, his wife and caregiver.
Bengough, 52, is one of countless high-risk people in California who have been placed far back in the prioritization queue for vaccination.
Most health care workers, nursing home workers and nursing home residents have been offered the shot already. Now, following the state’s guidance, Marin has moved to vaccinate everyone 75 or older, regardless of medical condition.
After that, the county plans follow the state’s recommendation to prioritize workers in high-risk sectors and people in vulnerable communities, said Dr. Matt Willis, the Marin County public health officer. People 16 to 64 with high-risk medical conditions likely won’t be offered a vaccine until the late spring at the earliest.
Bengough said he initially thought he would have no problem getting an early vaccination appointment after a report by the National Academies of Sciences, Engineering and Medicine in October. The report recommended that “people of all ages with comorbid and underlying conditions that put them at significantly higher risk” be placed second in line behind health care and senior home workers.
“By the end of December, it seemed like everybody was just talking about essential workers. Nobody was talking anymore about people with really serious underlying conditions.”
— Andreas Bengough, Sausalito
Bengough’s spirits fell, however, when the California Department of Public Health issued its protocol.
“By the end of December, it seemed like everybody was just talking about essential workers,” Bengough said. “Nobody was talking anymore about people with really serious underlying conditions.”
Then, on Jan. 12, after distribution of vaccines had bogged down due in large part to overly bureaucratic prioritization procedures, the U.S. Department of Health and Human Services recommended that vaccines be offered to all people over 65 and people with medical conditions that put them at higher risk of dying from a coronavirus infection.
State and county health officials, however, declined to follow the federal government’s new guidance on people at high medical risk.
Bengough said his pleas to Marin county and state officials elicited no response.
Dr. Alka Kanaya, Bengough’s primary care physician, cited the National Academies of Sciences’ recommendation.
“That makes a lot more sense in terms of equitable distribution of vaccines,” said Kanaya, an internal medicine physician with the University of California, San Francisco. “I’m concerned that using age as the main criteria and leaving out those who may be predisposed to bad outcomes is not the smartest way to do vaccine distribution. I have several patients who have severe chronic diseases who are below the age of 65 in the same boat.”
Kanaya said they include patients who have recently undergone bone marrow transplants and chemotherapy; patients who have had organ transplants and are on immunosuppressant medications; and patients who have chronic respiratory diseases, chronic heart disease and Type II diabetes.
Kanaya said she has sought vaccine for these patients.
“I have tried to make the case several times,” she said. “UCSF is using their own vaccine committee criteria, and they’re following the California Department of Public Health guidance.”
Dr. David Liang, a cardiologist at Stanford University Medical Center and another of Bengough’s doctors, said, “Is there a problem with the way vaccines are being rolled out? The answer is yes. Should people at high risk get the vaccine? Absolutely. There is no question about that. The question is how to implement it.”
Both Liang and Kanaya said they are being bombarded by patients who want to be vaccinated, but not all of them are severely ill.
Kanaya said, “It’s a tough position when there is incomplete data about who is at highest risk to make that call. I get emails every day from patients who aren’t at that high a risk.”
Liang said, “You can’t leave it to the doctors. There are going to be doctors out there who say, ‘Yeah I’ll just give it to everybody because all my patients want it.’ What we need is guidance, objective standards.”
During a webinar hosted by the ALS Association on Jan. 16, Dr. Amanda Cohn, chief medical officer with the Office of Vaccine Policy at the federal Centers for Disease Control, said the agency has posted a list of conditions that place people at severe risk should they contract the virus. Cohn said the CDC is aware of many other conditions that place people at extreme risk as well.
Cohn said anyone who has diminished lung or neuromuscular function, particularly due to respiratory disease, “should be considered for early vaccination.”
The Kaiser Family Foundation has reported that as of Jan. 19, “a total of 19 states included younger adults with high-risk medical conditions in phase 1a or 1b, including 6 states — Maine, Mississippi, Nebraska, New Jersey, Pennsylvania, and Virginia — that have revised their plans since January 11th.”
Bengough — whose condition is similar to ALS, or amyotrophic lateral sclerosis — said it has been hard for him to watch as Marin has prioritized other people at much lower medical risk for vaccinations, especially since there are relatively few people with truly severe medical conditions.
“This is actually a very small group, so why would you not try to protect the most vulnerable?” he said. “It made me feel very, very insignificant. It made me feel like my life and the lives of people like me were all of a sudden not worth anything.”