For US monkeypox patients, excruciating symptoms and a struggle for care

People queue for monkeypox vaccinations at a sexual health clinic in New York on July 7, 2022. PHOTO: NYTIMES

NEW YORK (NYTIMES) - Although he was covered with lesions, it took four hours of phone calls and then five hours in a Harlem emergency room for Mr 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 US 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 disorganisation in the public health response disturbed him more and more: the city's vaccine website glitches; a vaccine roll-out 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 could not find.

When he received a US$720 (S$1,005) 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."

Although 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 epicentre 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 (July 14) 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."

Gabriel Morales faced terrible pain after contracting monkeypox but had trouble finding treatment. PHOTO: NYTIMES

What is also striking about this outbreak, she said, is "how many of these patients have had difficulty getting the care they need to treat these symptoms".

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 through 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 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 Friday, up from 160 on July 8. Although 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.

One New York City patient, Mr 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 neighbourhood of Brooklyn, has private health insurance, so he went to a local urgent care to get tested while dizzy with a 39.4 deg C 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."

Mr Sebastian Kohn felt exhausted and feverish through much of the July 4 weekend and had painful, swollen lymph nodes. PHOTO: NYTIMES

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.

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 his concierge medical practice helped.

Mr Kohn also eventually received TPOXX, but only after an exhausting process.

The urgent-care centre 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," Mr Kohn said. "It's just not fair to have patients who are severely ill run in circles to organise 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 Centres for Disease Control and Prevention (CDC) for each patient.

It is not approved by the Food and Drug Administration for the treatment of monkeypox, although 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.

People queue for monkeypox vaccinations at a sexual health clinic in New York on July 7, 2022. PHOTO: NYTIMES

His clinic has given the antiviral to 26 patients so far, he said. Citywide, 70 prescriptions have been written, Dr Foote said.

Mr 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 Friday, 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 emphasised," 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 Joe 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, although demand still far outstrips supply.

The city has also been working to improve its vaccine roll-out system, reserving some doses for distribution through community providers and developing a mass vaccination plan. And education among health care providers, though still uneven, is growing.

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.

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 the night of June 26, 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.

Although 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 was not 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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