(CNN) The US Centers for Disease Control and Prevention plans to send a clear message to pharmacies on a conference call this week: Stop turning away immune-compromised people when they come seeking fourth doses of Covid-19 vaccines.
Although fourth doses are not currently recommended for the vast majority of Americans, the CDC has urged millions of people with compromised immune systems to get them.
But many immune-compromised people tell CNN that pharmacies and hospitals have refused to give them fourth doses, leaving those most vulnerable to the virus without the protection the CDC wants them to have.
"A lot of pharmacies are just not understanding. They hear 'fourth shot,' and it just freaks them out," said Elizabeth Nunn, who is immune-compromised and was turned away for a fourth shot by three pharmacies near her home north of New York City.
It's unclear what the disconnect has been between the CDC and vaccine providers. The agency announced months ago -- in October -- that immune-compromised people should get fourth shots. That news was widely covered in the media, and the federal agency posted its guidance on shots for immune-compromised people on a page for doctors and a page for the public.
In addition, the CDC has mentioned its fourth shot protocol for the immune-compromised on weekly conference calls with pharmacy groups since October, according to Kristen Nordlund, a CDC spokesperson.
The CDC estimates there are around 7 million immune-compromised Americans, including those with diseases like advanced HIV as well as those who take immune-suppressing drugs, such as organ transplant recipients and some people with cancer. Studies show that many of these patients did not have a full antibody response to two or even three doses of the Covid-19 vaccine.
Last fall, when the agency announced that the immune-compromised should get fourth shots, a fierce debate was going on in the US about whether the general population should receive third shots.
"That was really taking all the energy out of the room," said Michael Fraser, CEO of the Association of State and Territorial Health Officials. "Fourth doses for the immune-compromised were kind of footnotes."
Fraser added that he's "not excusing it," but the immune-compromised "just got lost in the shuffle."
"Honestly, I don't think there's any mischief going on," Fraser added. "It's just that getting this all to align has been hard."
Fraser and an official at a pharmacy association added that the CDC's fourth shot guidance is difficult to decipher.
"Confusion and information overload combined to create the perfect storm," said Allie Jo Shipman, director of state policy for the National Alliance of State Pharmacy Associations. She added that last fall, pharmacy leaders were also busy following news about changes in monoclonal antibody treatments and antiviral pills to fight Covid-19.
But the head of an advocacy group for people who are immune-compromised says more could have been done to avoid this "pharmacy snafu."
Janet Handal said the CDC could have written clearer guidance and used the time since October to communicate more effectively with pharmacies and state health departments.
"CDC needs to assess all their communication vehicles with an eye to communicating life-saving information quickly and broadly," said Handal, president of the Transplant Recipients and Immunocompromised Patient Advocacy Group.
Sunday, January 16, was supposed to be an auspicious day for Nunn, the immune-compromised woman in New York.
Nunn was more than five months past her third shot, which made her eligible for her fourth shot by the CDC guidance.
Nunn's immune system has been weakened by Cellcept, a powerful drug she takes to treat lupus. For two years, she has lived in lockdown mode in her home in Peekskill, New York, an hour north of New York City.
Nunn arrived at the CVS in Peekskill on January 16 after making an appointment online.
"When we arrived at CVS, the person at the pharmacy told me that 'corporate says no,' and they were kind of nasty about it," she said.
She said she explained that the CDC had recommended fourth shots for people with compromised immune systems, but it didn't help. She asked to speak with the pharmacist directly.
"We waited and waited. I can't stand for long periods of time, and so after about 20 minutes, we had to leave," she said.
Her next stop was the pharmacy at an Acme Market in nearby Mohegan Lake.
"When I told the pharmacist what happened at CVS, he said, 'that's ridiculous. Of course we'll do it for you,'" she remembers. "But then he said he'd have to call his manager, and the manager said no."
Nunn says she then called to make an appointment at Save Mor Drugs, a locally owned pharmacy in nearby Croton-on-Hudson.
"I told the [pharmacist] the whole story, and he said, 'that's terrible. Of course we'll give it to you,' " she remembers. But then, after speaking with his manager, the pharmacist said he couldn't give the shot because the pharmacy would " 'get in trouble,' " Nunn remembers.
"They're paying people to get vaccinated, and they're begging people to get boosted, and they won't give me this shot," Nunn said, referring to various programs nationwide that have offered financial incentives for getting vaccinated.
To make matters worse, Nunn's rheumatologist had directed her to go off Cellcept the day before the shot to increase the chances that the vaccine would be effective. Stopping the drug for even a day had made her tired and achy, and it turned out she had done it for nothing.
Plus, Nunn still lives in lockdown mode because an encounter with the virus could kill her. By going to the pharmacies, she had twice gone out in public -- and it ended up being for nothing.
In an email to CNN, CVS spokesperson Matt Blanchette said, "We are following CDC guidance and administering 4th doses of COVID-19 vaccine to patients who meet all eligibility requirements," and "as soon as fourth doses of COVID-19 vaccine were approved for immunocompromised patients, we communicated the eligibility guidelines to our pharmacy teams and updated our appointment scheduling system. We are continuing to educate and reinforce the guidance on fourth doses and following up with our pharmacies to address any confusion about eligibility."
Dana Ward, a spokeswoman for Acme, the second pharmacy where Nunn was turned away, said in an email to CNN that "we are looking further into this but can confirm that our pharmacies have followed CDC guidance and starting 1/7, are administering 4th doses to immunocompromised patients who received their 3rd COVID vaccine more than 5 months ago."
At Save Mor, the third place where Nunn was turned down, pharmacy technician Liam Schneider told CNN that "we can't be freely giving out free fourth doses to people who have already received a third dose."
When CNN said the CDC has recommended fourth doses for people like Nunn, Schneider reflected on what he had told Nunn and said, "we probably gave her misinformation."
Then he added that his pharmacy requires proof that someone is immune-compromised, such as a note from a doctor or medical records. The CDC does not suggest requiring documentation that someone is immune-compromised in order to get a fourth dose.
On August 13, the CDC gave permission for immune-compromised people to get third doses. Because the fourth dose comes five months later, patients started to visit pharmacies about two weeks ago.
Teri Dary, who takes an immunosuppressant to treat a neurological condition, said she was turned down at a Walgreens in Fort Atkinson, Wisconsin.
Walgreens spokesperson Alex Brown said in a statement to CNN, "Patient safety and wellbeing is our top priority. As vaccination guidelines continue to evolve, we make every effort to continuously update our pharmacy teams with the latest clinical guidelines and information."
Angie Rush, a kidney transplant recipient, says she was turned down at a Kroger pharmacy in Royal Oak, Michigan.
A statement from Kroger spokesperson Kristal Howard says, "We continue to follow the CDC's recommended COVID-19 vaccination guidelines, providing up to four doses for eligible patients. Our healthcare providers have been trained to support this policy."
Immune-compromised people say hospitals have also turned them away for fourth shots.
Glenn Menard, a liver transplant recipient, says he was turned down last week at UCLA Health for a fourth shot, and Rush, the woman who says she was turned away at Kroger, said Henry Ford Health System in Detroit called last week to cancel her appointment for a fourth shot. Both were five months past their third shot, and both said the hospitals told them they had to wait until they were six months out.
Originally, when the CDC recommended fourth shots for the immune-compromised, it said to wait six months, but in early January -- weeks before Menard and Rush showed up for their fourth shots -- the CDC shortened that interval to five months.
Rush, 46, said she felt defeated after getting turned away at two places. She was hoping that maybe four shots would give her enough protection that she could finally visit her daughter, who lives out of state.
"I came home and I sobbed, quite frankly," she said. "I haven't seen my daughter in two years."
A spokesperson for Henry Ford sent CNN a statement that says, "throughout the pandemic we have adhered to the CDC's guidance on administering vaccines to all of our patient populations including our transplant and immunocompromised patients. We continue to follow those recommendations. Earlier this month when the CDC revised the timeline for giving immunocompromised individuals a fourth dose of the Pfizer and Moderna vaccines, we promptly updated our policy to reflect these changes."
In a statement, UCLA spokesperson Phil Hampton wrote that "UCLA Health follows all updated guidance from the FDA and CDC on vaccine schedules and timing, including administration of supplemental and booster doses to immunocompromised patients."
Several of the pharmacies that denied fourth shots told CNN that they look to their state health departments for guidance, and they'd heard nothing from them about fourth shots for immune-compromised people.
Crystal Boatenreiter, a liver transplant recipient, says she was denied a fourth shot at Springfield Drug Store in Springfield, Louisiana.
David Cassanova, the pharmacist there, told CNN that he's been watching his state website and hasn't seen anything about fourth shots for immune-compromised people.
"People on the front lines are not familiar with fourth doses being available yet," he said. "We haven't been given guidance on this."
On its website, the Louisiana Department of Health states that people who are immune-compromised should receive a third vaccine dose 28 days after their second dose. The department makes no mention of a fourth shot.
When asked about fourth shots for people who are immunocompromised, Michelle McCalope, a spokesperson for the Louisiana Department of Health, said that "we have encouraged everyone to complete their primary series and get the booster shot when eligible. According to CDC and LDH guidance, this group would now be eligible for their booster shot."
A review last week by CNN found that several state health departments fail to mention on their websites that the CDC recommends four shots for immune-compromised people.
"A person should not receive more than three mRNA doses," according to guidance on a New York state government website labeled "For Immunocompromised New Yorkers."
After CNN reached out to the New York Department of Health, that sentence was deleted, and information was added advising fourth doses.
The Department of Health did send guidance on November 21 to pharmacies and other health care providers saying that moderately to severely immune-compromised adults "may receive a total of four COVID-19 vaccine doses." That line appears twice in a 16-page document that deals with a variety of vaccine issues for the entire population.
"As always, this guidance was communicated to all New York State licensed healthcare providers, as well as directly shared with all COVID-19 vaccine providers and administrators," Samantha Fuld, a New York State Department of Health spokesperson, wrote to CNN.
States do sometimes have outdated information on their websites, said Fraser, the CEO of the Association of State and Territorial Health Officials.
"My guess is, lots of stuff on those sites are out of date if you were to take a look," he said, adding that information "changes all the time, and states aren't always the best at updating their websites."
Rosa Baier, an associate professor at the Brown University School of Public Health whose immune-compromised mother was initially turned down for a fourth dose, added that the language on the CDC's website is not always straightforward.
The two CDC pages with vaccination guidance for the immune-compromised don't actually mention fourth shots or doses, instead using language such as "COVID-19 primary series vaccination" and "additional primary dose."
"You have to read between the lines to see that they're referring to shots one, two, three and four," she said. "You have to read it a few times to interpret it."
Baier said that such language is "confusing," and on January 7, she wrote a letter to the CDC requesting "clear communication of fourth-dose eligibility to vaccine providers,"
"I wish they had laid it out in 'shots number one, two, three, four" terminology, because that's how people think about it and that's how the shots are referred to on the vaccine card," Baier told CNN. "Vaccine providers should know that immunocompromised people with three doses on their vaccine cards are eligible for a fourth."
Nordlund, the CDC spokesperson, said the agency used language that it hoped would clarify that only immune-compromised people should get fourth doses, not anyone else.
She added that the agency has heard from immune-compromised people and their families, and "we're going to work harder at it to make sure those people are protected."
Of the six immune-compromised patients contacted by CNN last week, all but one of them eventually managed to get a fourth shot.
Several got them at CVS. The day after CNN reached out to the retail chain, several patients reported that pharmacists told them that "corporate" had reached out to tell them them to give fourth doses to immune-compromised patients.
Menard, the liver transplant patient in California, was one of them.
Menard's wife, a former journalist, led the effort to get her husband his shots. She said although she's pleased her husband was eventually successful, she's frustrated that it wasn't a smoother process for her and so many other families.
"It's not good for people running around trying to go to five different pharmacies, because it's not safe," Jill Gottesman said.
She remembers last week, showing pharmacists pages from the CDC's website, only to have them tell her they wouldn't give the shot.
"It would be nice if they believed us," she said. "We're not trying to pull one over on you. We just need the shot."