This CDC Scientist Couldn’t Access Monkeypox Treatment. Why?

William L. Jeffries III decided to call a colleague on Monday morning in mid-July. Jeffries is a senior health scientist with the Centers for Disease Control and Prevention (Atlanta), where he studies how racism and homophobia affect health in the United States. Jeffries, who describes his self as a Black man of the same gender, views the work as a way for him to serve his people, and God.

However, this call was personal. He was in pain and angry, and was lying on his back.

Jeffries was furious for the hundreds of monkeypox-infected gay and bisexual men. He was particularly angry at the fact that the burden fell on Black and Latino communities. He was upset that even though the federal government said for eight weeks that they had the tools necessary to address the growing outbreak, many people were still finding it difficult to get care.

And he was angry because he himself now had monkeypox and couldn’t find anyone to diagnose or treat him.

Jeffries told his colleague, who was helping to lead the CDC’s monkeypox response, about his ordeal. He was aware that he was a victim to the very same American public health system he studied.

“I myself am a trained disease detective. I have conducted outbreak investigations for HIV/syphilis. I am a published scientist. And I know a lot about public health and infectious disease transmission,” Jeffries said. “I emphasize my training and my experience because if I had to go to three different places before I got diagnosed, imagine what the average gay man has to do?”

At the end of September, more that three quarters of the people with monkeypox in Georgia had been diagnosed as Black. Georgia also had the second-highest number of cases of any state in the United States, behind New York. As the outbreak has spread, the federal government has been forced to reckon with the disease’s disproportionate burden on Black communities around the country. Black Americans make up more that half of all monkeypox cases nationwide, even though they represent less than 14% the U.S. total population. Nationally, more than 26,000 people have been infected.

Rochelle Walensky (CDC Director) recently admitted that she and top public health officials had anticipated these inequities. These inequalities were made predictable by decades of tracking HIV/AIDS and other infectious disease. Public health officials who lost the trust of many AmericansIn the first two years of COVID-19’s pandemic, officials had an opportunity to demonstrate that they had learned lessons from their mistakes when monkeypox struck. Yet what happened to Jeffries and others in Georgia in the early months of the outbreak shows how federal officials, who suspected that communities of color would get monkeypox at higher rates, failed to intervene in ways that could have prevented — or at least lessened — that suffering.

“A lot of people got hurt,” said Dr. David Holland, the chief clinical officer for the Board of Health in Fulton County, which covers 90% of Atlanta. He is also angry at the federal response’s first months. “You can debate what the right thing to do would have been, but doing nothing is not on that list. And that’s kind of what was done.”

Dozens of infectious disease experts spoke ProPublicaThe likely path of the virus in the U.S. was evident when reports in May claimed that monkeypox had infiltrated European gay and bisexual communities. They knew that although the disease would likely spread first in wealthier, whiter communities of people, the majority of the disease would soon be carried out by black and Latino men. This is the same path that many other infectious diseases have taken before.

The reasons for this are not mysterious. Black people are less likely than those of other races to see a regular physician, to have insurance coverage, and to have HIV, diabetes, or other diseases that could lead to new infections. Whites are more likely than others to have benefits that can reduce the effects of illness. This includes jobs that allow them to take sick leave paid for and wealth that can be used to buy better care.

Federal and state officials nevertheless failed to make testing readily available, slow-walked the rollout of vaccines and didn’t make it clear during the first two months of the outbreak that people of color, like Jeffries, were at elevated risk for harm. These mistakes exacerbated long-standing health inequalities.

“Any time you fumble the response to an epidemic it will cut through the weakest seams in your society,” said Dr. Jay Varma, a professor at Weill Cornell Medical College and former CDC official.

When Jeffries was 9 or 10 years old, his father shared with him a book from 1928 called “Leaders of the Colored Race in Alabama.” Inside was a photo of his great-grandfather and namesake, Dr. William L. Jeffries. Jeffries was blown away that in the early 20th century, a Black man could achieve the level of education — a doctorate in divinity — required to earn him the title of doctor. His father agreed and said that Jeffries could become a doctor. From that moment on, he knew he would follow in his great-grandfather’s footsteps. “I had to be Dr. Somebody,” Jeffries said. “That was just part of my destiny.”

He was passionate about the health of communities and so he left his Polk County, Florida home to pursue a doctoral program at the University of Florida in sociology. He recalls a professor explaining to him how the CDC responds in his first year. The professor described disease investigators as the “cream of the crop.” For Jeffries, this was an epiphany: “Immediately, I just knew that was what I was supposed to be.”

Four years later, with a Ph.D. in hand and a Dr. in front of his name, Jeffries entered the CDC’s Epidemic Intelligence Service. He was trained to be a doctor and a disease researcher, just like his professor. It was the only job that he applied for. Jeffries has been with CDC since then.

Jeffries, now 42, is a senior health scientist at the Office of Health Equity in Division of HIV Prevention. He investigates the factors that place vulnerable populations at risk for HIVHIV and other diseases. On average, gay or bisexual Black men have six times as many HIV-positive people than their white counterparts. Whites have better access to prevention and new treatments. Many Southern states do not have Medicaid expansions that provide insurance coverage for all poor adults. This makes people less likely to be able to see a doctor and makes them less well-off when they do fall ill.

“God has had me be here to fight for the oppressed and to be a voice for those who, in many instances in our society, do not have a voice that can be heard by people in positions of power,” Jeffries said. “And my voice is what I use to serve those who Jesus called the least of these among us.”

Jeffries is aware that he shares important aspects with the people he studies, and that this can affect his vulnerability to disease. So when news of monkeypox started to surface, Jeffries kept an eye out. He knew he was at risk and wanted to get vaccinated. Condoms don’t prevent the transmission of monkeypox, unlike HIV. He also knew the vaccine wasn’t available in Atlanta yet. However, the risk seemed remote. Government officials said there were only a couple dozen cases in metro Atlanta — a city of over 6 million people — and they made it sound like they had the situation under control.

Jeffries doesn’t remember when he got monkeypox. It was during a sex encounter in the early hours Saturday, July 9th. Later that day, the Fulton County Board of Health staff held their first monkeypox vaccination clinic.

Jeffries began to feel some itching and irritation on Sunday night. A few days later, Jeffries felt some itching and irritation around his anus. On Friday, he went into a LGBTQ-friendly clinic and told staff that he thought he had monkeypox. They had neither.

Instead, he said they tested him for a range of sexually transmitted diseases and treated him for a suspected case of chlamydia, though results later showed he didn’t have any of those diseases. Jeffries was surprised that in Atlanta, where there were already more than two dozen known monkeypox cases, the clinic couldn’t test him for it. It had been more than eight weeks since the first case of monkeypox was reported in the U.S. and testing was supposed be widespread.

He was frustrated and went home to be alone. The pain continued to grow so he went home on Saturday night and sought relief in an epsom salt bath. He stayed in the warm water until after midnight. He noticed a small lesion on his chest close to his left shoulder, as he was getting out of bed. He was confused and reached for his back to feel another bump. He looked down to see another one lower on his torso. They were spreading fast.

Jeffries woke up in the morning, exhausted and feeling uncomfortable, and prayed. He knew it was time for him to go to the emergency department.

He believed that a hospital attached at a university would be his best bet, as they have better connections to public health departments and more up-to date knowledge. And he knew just the place: Emory University’s renowned teaching hospital on Clifton Road, a stone’s throw from CDC headquarters. “Atlanta is this hub for Black, gay and bisexual men, and the CDC is right here. Surely, these factors would converge to lead you to have vaccine and treatment available,” Jeffries recalled thinking.

Emory was more like the other. Jeffries stated that the ER doctor knew nothing about monkeypox. Jeffries said he brought a list of the two vaccines and four possible treatments, pulled from the CDC website, but the doctor didn’t know about any of them and, regardless, said they were not available at Emory.

Jeffries claimed that the ER doctor took a sample of one of Jeffries’ lesions and tested it for the monkeypox virus. Jeffries couldn’t understand why the hospital didn’t send in an infectious disease specialist. He claimed that the hospital sent him home with prescriptions of ibuprofen, and a steroid cream.

The next morning, Brooks was in severe pain and called Dr. John Brooks, a trusted colleague from the CDC. Brooks usually serves as the chief medical officer for HIV prevention but is currently helping to lead the nation’s monkeypox response. Jeffries was desperate for treatment and believed Brooks could help. Brooks also needed to be informed of the severity of the situation. “I knew that gay and bisexual men in Fulton County, irrespective of their race, were going to be placed at harm because of the overall ignorance, the blundering and the lack of resources,” Jeffries said.

Jeffries’ call came nearly nine weeks after the outbreak of monkeypox in the U.S. Officials from the White House and the Department of Health and Human Services assured the public that they were responding in full force and had all the necessary tools — a test, a treatment and a vaccine. They did not seem to be in a hurry to use them.

Take the vaccine. The Jynneos vaccine was developed and manufactured by federal officials. This was to protect the U.S. from terrorists who could use smallpox to attack it. The vaccine can be used against both smallpox and monkeypox. It was approved by the Food and Drug Administration in 2019, and is kept in the Strategic National Stockpile.

However, they were in very short supply when the first cases appeared in the U.S. in May. In the years that followed, hundreds of thousands of doses had expired. they waited to order moreYou should consider looking for a different vaccine preparation with a longer shelf live. The New York TimesPreviously reported. The 372,000 doses in vials had been prepared. mostly in Denmark.

Officials from the Biomedical Advanced research and Development Authority, which is the federal agency that develops and procures vaccines and drugs to protect against pandemics, placed orders for 72,000 doses in May. “We are prepared with both the vaccines and antivirals needed to protect the American people,” Dawn O’Connell, the HHS assistant secretary for preparedness and response, wrote in a blog post on May 24.

Three weeks later, O’Connell wrote that those 72,000 vaccine doses were in the federal government’s “immediate inventory.” Two more weeks passed, and HHS announced it would make 56,000 doses “available immediately.”

By then, it was the end of June, and Atlanta hadn’t held a single vaccine drive.

That wasn’t for lack of trying. With cases climbing in June and Georgians waiting for their first allotment of vaccines, Holland, the chief clinical officer for Fulton County’s Board of Health, made an official request for ACAM2000, an older vaccine made to ward off smallpox. It’s been available by the millions since 2008, when it was added to the Strategic National Stockpile, before the newer Jynneos vaccine existed. However, side effects can occur with older vaccines, making them unsafe for many people. This includes pregnant women, HIV-positive people, and people with weakened immune systems.

Federal officials said states could order ACAM2000, but they didn’t exactly endorse it. Holland claimed that Georgia officials declined Holland’s request. He understands the concerns, and he respects the decision to not use ACAM2000. But he’s frustrated that in the first months, it felt like the answer to every effort at prevention was just “no.”

Nancy Nydam, spokesperson for the Georgia Department of Public Health, made reference to the potential side effects of ACAM2000 in a written statement. She also noted that no other jurisdiction had used the vaccine during the monkeypox epidemic.

Fulton County received its long-awaited shipment in July of vaccines. It contained enough for only 200 people. In the weeks that followed, more vaccines were added.

Comparatively, Canadian officials began to vaccinate at-risk individuals in June. According to data, Montreal officials vaccinated over 15,300 people by the end of July. ProPublica by the city’s health department. A friend of Jeffries’ was able to get vaccinated at an outdoor walk-up clinic in Montreal’s Gay Village neighborhood on Aug. 1 while he was in the city for the International AIDS Conference. The health workers didn’t care that he wasn’t Canadian.

“We know we live in a global village. We thought making no barriers was the most effective strategy,” said Dr. Genevieve Bergeron of the Montreal public health department.

Georgia has more than twice as many monkeypox cases per head as Quebec, where Montreal is located.

“The thing that is most galling to me is that this was predictable,” said Greg Millett, a former CDC researcher and current vice president and director of public policy at amfAR, a nonprofit dedicated to AIDS research and advocacy. There were approximately 700 known cases of HIV in the U.S. at the time Jeffries was diagnosed and Atlanta hosted its first vaccine clinic. These cases were almost all gay and bisexual and were increasing exponentially. Millett said that the U.S. was still dragging its feet. To Millett, it’s hard not to see homophobia and racism as an underlying reason. “If this was another population, would they have moved this slowly?”

Jeffries made a call to his colleague on July 18 and was immediately able to make a same day appointment with Dr. Kimberly Workowski (emergency medicine specialist at Emory University). She also assists in the creation of the treatment guidelines for sexually transmitted disease at the CDC. In an Emory exam room, Workowski donned protective equipment — goggles, gloves, masks and gowns — to examine Jeffries.

Workowski stated that the lesions were very similar to monkeypox. He was given an hour-long work-up by Workowski, which included checking his body and discussing his symptoms. He’d had bad experiences with the medical system before, like the time he went in for routine testing and a doctor told him he shouldn’t have sex with other men because that’s how you get sexually transmitted diseases. So he didn’t take it for granted that she was treating him with dignity.

Jeffries stated that she told Jeffries that the ER only swabbed a single lesion, when they were supposed swab two or more, and that the sample could not be located. Jeffries was shocked. Workowski counted the lesions and took several samples for a second test. It was ultimately positive.

A spokesperson for Emory Healthcare did not answer questions about Jeffries’ care. Jeffries signed a confidentiality waiver to allow Emory Healthcare to discuss the care he received at the emergency room on July 17th. In a written statement, the spokesperson said Emory Healthcare remains “steadfast in providing excellent and equitable health care to all of our patients.” Emory’s emergency departments follow a standard protocol for suspected monkeypox infections that “includes triage, testing and if necessary, referral to a specialist,” she wrote. “If needed, patients will be admitted to the hospital.”

Jeffries saw Workowski the day before, and her office called to inform him that TPOXX, an experimental antiviral drug, was available for him.

The lesions stopped growing and spreading quickly after he began taking the medicine. But the sores and inflammation in the lining of his rectum were causing the worst pain he’s ever experienced, so bad that he couldn’t sleep. Five days after his first visit to the emergency room, he drove to another Emory ER in Midtown to be admitted. He stayed in the hospital for four days on a combination of medications that finally eased his pain.

He felt more alone than he had ever felt in days and was now isolated. While they talked, the doctor taking his care held her hand and asked him how he was doing. His life outside of monkeypox was discussed by staff. He knew that the hospital was busy but that no one seemed rushed. “They took the time to talk to me and make me feel OK,” he said.

Physicians who wanted to administer TPOXX to their patients had to complete over 100 pages of paperwork. The medication was initially developedby the federal government. The U.S. has more than 1.7 million dosesIts stockpile. The treatment was approved in Europe for monkeypox. However, it is not available in the United States as an experimental drug. The CDC has reduced paperwork since August. However, it can take over an hour for the form to be completed and TPOXX can be difficult to obtain.

HHS officials had already sent enough medicine by the end of June to treat all patients. 300 people nationally. From around the time of Jeffries’ hospitalization in late July through the end of August, physicians in Georgia handed out just over 600 courses of the treatment, according to data provided to ProPublicaGeorgia Department of Public Health. It would have been enough to cover half of those who were diagnosed in that time.

The Georgia Department of Public Health has not provided data on the race or ethnicity of TPOXXX recipients. The CDC released preliminary data that showed white people received 34% of the treatment courses. They account for 28% of all cases nationwide as of Sept. 28. Even higher was the share that went to whites in the initial months of the outbreak. according to CDC research.

Jeffries feels certain that he could have avoided the worst of his pain, and the time he spent in the hospital, if he had received treatment sooner.

Jeffries called friends and colleagues as soon as he was discharged from the hospital. Georgia — especially its Black and queer communities — needed more resources. He wanted people to know how bad it was and that things shouldn’t be this way.

Justin Smith, Smith’s friend and director of the Campaign to End AIDS, was his contact who was able get him vaccinated at Montreal’s AIDS conference. Smith, who is the director of the Campaign to End AIDS at a number of HIV clinics in Atlanta, had helped organize a virtual meeting with other activists.

There, Joshua O’Neal, the sexual health program director for the Fulton County Board of Health, told attendees that it was OK to be angry about the government’s response so far, that he sure was. O’Neal shared alarming statistics: Cases of monkeypox in Fulton County had nearly doubled in the three days before the event, and more than half of the people there with monkeypox also had HIV. 80% of the people who had both viruses were Black. “It is our responsibility to ensure that those folks are the ones we’re reaching out to,” he told the group.

O’Neal acknowledged that the scant appointments for the first two vaccine clinics were gone within minutes and that most who got them were white. O’Neal stated that he would work with community organizations to make them more accessible.

On Aug. 4, Jeffries was discharged from the hospital. The Biden administration declared a state of emergency on Aug. 4. Margo Snipe reported the news for Capital B (a non-profit news site dedicated to Black communities) when it happened. officials made no mentionThe growing racial-ethnic disparities.

Jeffries was pleased to learn that Dr. Demetre Daskalakis was appointed by the White House to a top post on its monkeypox team. Jeffries knows Daskalakis and believes that he is dedicated to reducing the disparities. The White House declined Daskalakis’ availability for interview. ProPublicaInstead, contact the CDC.

Walensky, the CDC’s director, was not available for interview by the CDC. Walensky’s deputy press secretary referred a reporter to Walensky’s comments at a White House briefing on Sept. 15. “It is critical that education, vaccinations, testing and treatment are equally accessible to all populations, but especially those most affected” by the monkeypox outbreak, Walensky said. “CDC remains committed to collaborating with jurisdictions to reduce health disparities.”

Kevin Griffis, a different spokesperson for the CDC, responded to the question and stated that the agency had appointed an equity officer to the response team in May. The agency also did outreach to LGBTQ groups over the following weeks. The CDC published guidelines for how to avoid monkeypox on its website in June. It has been updating this guidance ever since. “This was an issue that Dr. Walensky and Dr. Daskalakis both talked about really as part of essentially every discussion that would be had about the outbreak: ensuring that we were doing everything we can to reach diverse populations,” Griffis said.

In the United States, the spread of new cases had slowed in large parts of the country by September. Experts credit this decline to queer men’s behavior change. August survey found that gay and bisexual men were most likely to report it. changing their sexual practicesTo protect themselves. It’s too soon to say whether vaccine drives, which were ramped up at the end of August, are playing a role, experts say. In an effort understand potential treatments, federal officials began recruiting monkeypox sufferers for a clinical study of TPOXXX. And O’Connell, of HHS, told a Senate committee on Sept. 14 that she had made more than 1.1 million vials of Jynneos vaccine available to health departments.

Fulton County Board of Health kept its word and partnered with several community organizations to reach the Black community. According to a county report, more than half the first doses had been given to Black people as of September 15. Nydam, the Georgia Department of Public Health spokesperson, wrote that the state worked with federal officials to give out more than 4,000 doses at Atlanta’s Black Pride festival on Labor Day weekend.

“High demand and limited vaccine supply created access challenges for vaccines in general during the early weeks of the response, but the partnerships with community-based organizations greatly helped us with addressing health disparities in our vaccine roll out,” Nydam wrote.

Congress has yet to allocate any money for the monkeypox response. TPOXXX and vaccine are provided free of charge, but Fulton County had to use its STD budget in order to run its vaccine clinics. “We’re spending our entire STD budget for the year and hoping that at some point the federal government will reimburse us,” Holland said. That’s money that also needs to be used for the simultaneous epidemics of HIV and syphilis, both of which disproportionately harm Black men and women.

While the spread of monkeypox is slowing, Black Americans represent a growing share of the overall cases — from 37% on Aug. 28 to 51% of all cases just three weeks later, according to the most recent data available.

Jeffries still has complications from monkeypox. He shares a greater concern with HIV prevention workers, that Black LGBTQ people will still be suffering from monkeypox, even though the virus has been eradicated. That’s another pattern they have seen many times before.

Thinking about what should have been done differently in those early months, it’s clear to Jeffries that everything the federal government has done since August should have happened much sooner. That could have saved a lot of damage.

His research also shows him that to stop these predictable patterns, one must address the economic inequality, racism, homophobia, and homophobia that are the root causes of so many health disparities. Lately he’s been thinking about a lesson his grandfather taught him when he was young.

Jeffries’ grandfather worked 12 hours a day, six days a week in Florida’s citrus groves, and he was still poor. He had a garden to provide food for his family and would sometimes take Jeffries along to show him how to farm. Jeffries was one day pulling at weeds, snapping the tops. His grandfather stopped Jeffries.

“That ain’t how you do it, baby,” his grandfather told him. “You’ve got to get it by the root. Because if you don’t get it by the root, it’ll grow back.”