For Monkeypox Patients, Excruciating Symptoms and a Struggle for Care
As New York City and the federal government strain to supply enough vaccines, patients face a private battle to find treatment and relief from serious symptoms.
July 18, 2022Updated 9:53 a.m. ET
Although he was covered with lesions, it took four hours of phone calls, and then five hours in a Harlem emergency room, for Gabriel Morales to be tested for the monkeypox virus earlier this month. And that was just the beginning of his wait.
Mr. Morales was sent home and told the Department of Health would call with his results in less than a week. The call never came.
He spent the next eight days alone in his apartment in what he described as excruciating pain, trying to find someone to prescribe him pain medication and a hard-to-access antiviral drug.
As time passed, the disorganization in the public health response disturbed him more and more: the city’s vaccine website glitches; a vaccine rollout that seemed designed to reach the privileged and that turned him away; an opaque process to access medicine that he believed could help, but that he couldn’t find.
When he received a $720 bill for his emergency room visit, it felt like more than incompetence. It felt like a lack of compassion.
“I understand that this is new — but it is urgent,” said Mr. Morales, 27, who was eventually prescribed the antiviral drug to help with his symptoms. His test, he found out after 10 days, had never been picked up from the hospital. “It was just the worst pain I’ve experienced in my life.”
While monkeypox can sometimes result in mild symptoms, it is turning out to be unexpectedly severe for a substantial number of patients infected in this outbreak, according to doctors, public health officials and patients in New York City, the epicenter of the nation’s cases.
Beyond the very public shortcomings in the government’s vaccination efforts are the private struggles of the men infected with the disease who have found care hard to come by. Internal lesions in the anus, genitals and mouth can be particularly painful, and there is growing concern that they may cause debilitating scarring.
“What many of us learned in medical schools is that monkeypox is a mild, self-limiting illness,” said Dr. Mary Foote, medical director of the office of emergency preparedness and response at the city’s Department of Health, speaking at a Thursday briefing hosted by the Infectious Diseases Society of America. “But the reality on the ground is that a lot of people with this infection are really suffering.”
What’s also striking, she said, about this outbreak, is “how many of these patients have had difficulty getting the care they need to treat these symptoms.”
What to Know About the Monkeypox Virus
What is monkeypox? Monkeypox is a virus endemic in parts of Central and West Africa. It is similar to smallpox, but less severe. It was discovered in 1958, after outbreaks occurred in monkeys kept for research, according to the Centers for Disease Control and Prevention.
What to Know About the Monkeypox Virus
What are the symptoms? Monkeypox creates a rash that starts with flat red marks that become raised and filled with pus. Infected people may also have a fever and body aches. Symptoms typically appear in six to 13 days but can take as long as three weeks after exposure to show, and can last for two to four weeks. Health officials say smallpox vaccines and other treatments can be used to control an outbreak.
What to Know About the Monkeypox Virus
How infectious is it? The virus spreads mainly through body fluids, skin contact and respiratory droplets, though some experts suggest that it could occasionally be airborne. Typically it does not lead to major outbreaks, though it has spread in unusual ways this year, and among populations that have not been vulnerable in the past.
What to Know About the Monkeypox Virus
Should I be worried? The likelihood of the virus being spread during sexual contact is high, but the risk of transmission in other ways is low. Most people have mild symptoms and recover within weeks, but the virus can be fatal in a small percentage of cases. Experts say that monkeypox is unlikely to create a pandemic scenario similar to that of the coronavirus.
What to Know About the Monkeypox Virus
What’s the situation in the United States?Experts say that the rapid spread of monkeypox across the country and the government’s sluggish response raise questions about the nation’s preparedness for pandemic threats. Tests will not be readily available until later this month and vaccines will be in short supply for months. Official case counts, now in the hundreds, are likely a gross underestimate.
Monkeypox, endemic in parts of Africa for decades, has been spreading globally since early May through networks of men who have sex with men, probably sparked by transmission at one or more raves in Europe, researchers believe. The disease, which mostly transmits though intimate, skin-to-skin contact, has resulted in fatalities in Africa, but no one has yet died of the disease in the United States.
The first American case was recorded on May 18. There have now been more than 1,800 cases, affecting almost every state. Experts are concerned that if the outbreak is not contained, the virus will persist and spread more widely.
In New York City, cases have nearly tripled over the past week to 461 total cases on July 15, up from 160 on July 8. While some of that increase stems from expanded testing capacity and awareness, the spread of the disease in the city is “exponential,” said Dr. Foote, and is likely to continue for a while.
The unexpected severity of symptoms is making patients’ encounters with an overburdened health care system that was not prepared for this outbreak even more difficult. Interviews with six recent and current monkeypox patients in New York City, and three in other cities across the country, suggest that the public health response has been slow and underresourced at every level, from testing to treatment to vaccination.
Another of those patients, Sebastian Kohn, 39, felt exhausted and feverish through much of the July 4 weekend and had painful, swollen lymph nodes. Then the rash started.
Mr. Kohn, who lives in the Flatbush neighborhood of Brooklyn, has private health insurance, so he went to a local urgent care to get tested while dizzy with a 103-degree fever. But he was not prescribed anything stronger than Tylenol for the pain. “The most painful thing are the anal rectal lesions,” he said. “They are just excruciating.”
Ultimately, he said, lidocaine helped, but for a week, no one prescribed it to him.
Both Mr. Morales and Mr. Kohn are sexually active gay men, as are most patients so far in the outbreak in New York and beyond. Within that group, privilege and know-how has helped some people find care faster than others.
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A lawyer who asked to be identified by his initial, M., to protect his medical privacy, said he went into full litigator mode after a sexual partner called him on June 15 to tell him he had monkeypox.
M. was able to get a first vaccine dose at Bellevue, the city’s main public hospital and a hub of its monkeypox response, by showing up and insisting. After he tested positive despite the dose, he was able to get the sought-after antiviral drug, TPOXX, which relieves symptoms but requires special approval for each patient, because one medical practice helped.
“It was still horrible but I was lucky,” he said. “I’m just worried about everybody else.”
Mr. Kohn also eventually received TPOXX, but only after an exhausting process.
The urgent care center where he had been tested told him to call the Department of Health. The Department of Health told him he had to be referred by his primary care doctor. His doctor’s office told him to speak to the health department.
Eventually, he received a call back from a sexual health clinic affiliated with NewYork-Presbyterian Hospital, which said someone at the health department had referred him. “It’s just no coordination at all,” he said. “It’s just not fair to have patients who are severely ill run in circles to organize their own care.”
TPOXX, or tecovirimat, which was originally developed in case of a smallpox bioterrorism incident, is only available for monkeypox treatment through a compassionate-use protocol, which requires submitting hours of paperwork to the Centers for Disease Control and Prevention for each patient. It is not approved by the Food and Drug Administration for the treatment of monkeypox, though anecdotally it is showing positive results, clinicians say.
Providers and local health officials are pushing the federal government to open up access to the drug.
“This is not a mild disease, for a percentage of people it is much more worse than I would have anticipated,” said Dr. Jason Zucker, an infectious disease specialist at the NewYork-Presbyterian clinic.
His clinic has given the antiviral to 26 patients so far, he said. Citywide, 70 prescriptions have been written, Dr. Foote said.
“As a city and a system, we are still really struggling to meet the demand,” she said.
Sergio Rodriguez, 39, is a queer trans man who lives on Manhattan’s Lower East Side. Because he was already a patient at Callen-Lorde, a well-known sexual health clinic, he was able to quickly get an appointment to be swabbed there for lesions on July 5. But his results never came back, either.
A week after his test, he did receive a call from the Health Department — but it was a contact tracer telling him he had been exposed to someone else with the virus. Mr. Rodriguez told the tracer he was living with his immunocompromised, 76-year-old father, and that he desperately needed him vaccinated.
Finally, on July 15, the department called his father to arrange for his vaccination.
Mr. Rodriguez was frustrated with the response. “In my experience, especially as a trans Latino person in New York City, my health and my concerns are not going to be emphasized,” he said. “Things are going to go to people that have more access and that have more strings to pull and also who are of a different socioeconomic class.”
Dr. Foote said the Health Department is well aware of the difficulties people are having in accessing care. City health officials are trying to push the federal government for more vaccines and access to TPOXX and are concerned about equity in distributing it. Mayor Eric Adams recently wrote a letter to President Biden asking for more vaccines.
In recent weeks, aspects of the response have improved. Testing capacity has grown after LabCorp, a commercial lab, began offering tests. Vaccines have begun to flow into the city in greater numbers, though demand still far outstrips supply. On Friday, 9,200 vaccine appointments were booked in seven minutes, the city said.
The city has also been working to improve its vaccine rollout system, reserving some doses for distribution through community providers and developing a mass vaccination plan. And education among health care providers, though still uneven, has been growing: L.G.B.T.Q. health organizations have held webinars, and the city has issued treatment guidance to providers.
Eli, 28, a Chelsea resident who works in nightlife and asked to be identified by his nickname to protect his medical privacy, was among the first in New York to test positive for monkeypox. He came down with a fever on June 22 and began noticing anal pain the next day, as did three friends he had been sexually active with on Fire Island.
The next day, he went to the Chelsea Sexual Health Clinic, where he was told by two providers that he most likely had a different sexually transmitted disease, not monkeypox.
By Sunday night, the pain had increased so much that he and his friends went to an urgent care clinic in Union Square. The doctor at first refused to test him for monkeypox, he said, but eventually agreed to submit photos of his lesions to the Department of Health.
He said the Health Department called five days later with his results, and that, after he pushed, the contact tracer gave him the cellphone number for the Department of Health’s head of bioterrorism. That connection helped him obtain shots for 26 close contacts — friends and people he works with in nightlife who he knew were at high risk.
Though his own case was relatively mild, Eli said he has found it very upsetting to watch the government flub its virus response. He has known from the beginning, he said, that it probably wasn’t going to go well.
“‘Y’all are being dumb about this,’” he recalled yelling at the Health Department tracer. “‘This is going to be bad.’”
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