Opinion | Suffering Endures on the Other Side of the Mpox Curve

I couldn’t remember exactly where I knew him from, but I recognized his large olive-green eyes above his mask when he stopped at my clinic office door. “Hola doctor, me recuerdas [do you remember me]?” he asked excitedly. He said I had helped him during the summer when he had a severe case of monkeypox (recently renamed mpox by the World Health Organization). Now, he was almost completely back to normal — his skin with a few small scars, the debilitating pain now a distant memory.

I immediately recalled how emotional it was the day we met on a video conference call for his visit. He was isolating in a small apartment he shared with a roommate, speaking in hushed tones, the walls behind him bare, and he laid on his stomach because it was too painful to sit or lay on his buttocks where the lesions were. An undocumented immigrant from Ecuador and a queer sex worker in his 30s, my patient fought back tears when I explained it could take weeks for his symptoms to resolve and that he could pass the infection to others through close contact. I gave him my work cell number and told him to call if the isolation became too much. He called a few times between visits, mostly because he had no one else to talk to.

At the height of the outbreak, many of the patients we saw with mpox at NYC Health + Hospitals/Bellevue — the city’s main public hospital where I lead our group of infectious disease physicians — came from similar backgrounds. They were undocumented, gig economy workers who were uninsured or underinsured, non-English speaking, with unstable housing, and often without a strong social network.

According to the CDC, mpox has predominantly but not exclusively impacted the LGBTQIA+ community, and disproportionately and increasingly Black and brown people as the outbreak continued. During this time, we could only offer patients who presented with severe mpox medication to control their excruciating pain and itching; we gave most of them tecovirimat (Tpoxx), a medication that is safe but not yet proven effective in clinical trials. I still remember supporting one of my patients under threat of eviction as new mpox lesions popped up. Another patient told me he feared that if he didn’t go back to his postal service job, he had no idea how he would financially support his 3-year old nephew who he was raising.

The Biden administration recently announced that it will allow the mpox public health emergency declaration to expire at the end of January. Notably, the current outbreak has slowed significantly, from 635 cases per day at its peak in August to about 6 cases per day now, due to an impressive 1.1 million vaccine doses administered, higher community-level immunity from infection, and behavior change. But the low count may not truly reflect the current spread because we aren’t testing enough or because a lack of health insurance or stigma concerns are preventing patients from seeking care. There is no guarantee numbers won’t rise again.

While the declining epidemic curve is worth celebrating, the virus remains with us, with sometimes deadly consequences for those facing varying intersections of inequity. A recent CDC report showed that the people hospitalized with mpox, with the worst and most severe outcomes, are Black, living with advanced HIV, and experiencing homelessness. This is the profile of who’s suffering on the other side of the curve.

I believe that when public health emergencies end, they should come with a community-informed national plan focused on how to prevent the same level of suffering in the future. Our country is willing to tolerate way too much morbidity and mortality with infectious disease outbreaks — as seen with COVID-19 — and the way we respond when certain communities like LGBTQIA+ people of color are disproportionately impacted speaks volumes to our values.

It is shameful that the U.S. Congress still has not passed one new dollar in funding to address the outbreak. The Biden administration — with the mpox response led by Robert J. Fenton, Jr. and Demetre Daskalakis, MD, MPH — has been creative in reallocating funds used for HIV and other sexually transmitted infections to support health system and community-based efforts to fight mpox, but this remains inadequate to the needs of a robust safety net during a national outbreak. In the future, when new pathogens emerge, there should be new funding triggered to provide safe temporary housing for isolation, mental health support, and paid leave, among other necessary measures.

Tragically, two gay Black men with advanced HIV in our hospital died from mpox in the past few weeks. Some studies show up to 40% of patients with mpox are living with HIV. Part of me feels like this is just something that happens in an outbreak — sometimes, people sadly face an overwhelming infection and pass away. But I know that chronic lack of access to care, the challenges and stigma that come with taking HIV medication every day, and delays in recognition and treatment of mpox determined the severity of their cases. They didn’t have to die.

Perhaps who’s being most impacted is why it feels like the country has turned away from mpox. There has been a noticeable lack of news coverage. It is difficult when friends outside of medicine ask me, “Is that still going on?”

With everything we went through, and all the inequities mpox once again revealed, we’re still not any closer to solving our country’s entrenched problems that leave us vulnerable to poor outcomes during an outbreak. Like COVID-19, the U.S. once again has reported the highest number of mpox cases and deaths in the world. It feels like we’re in a constant state of emergency, in which one’s zip code, immigration or insurance status, or skin color determines whether they live or die.

Hope is not a strategy, but I can hope the next viral outbreak won’t be a more lethal virus or variant than mpox was. Some may say that the case numbers are so low now, that not too many people died, so what’s the big deal? But it is precisely when we can collectively take a breath that we should pay attention and see clearly what was done right, what was done wrong, and what should never happen again.

We need to increase vaccine access in countries like Nigeria, where mpox has been endemic for years, to decrease the likelihood of a future global outbreak. Like long COVID, we need to support patients struggling with the sequelae of mpox — disfiguring scars, mental health challenges, chronic genital and rectal pain — and ensure they have access to care.

We need to change our protocols and educate primary care providers and patients to ensure mpox is always part of the differential diagnosis, and that there is a low threshold for testing. We need to center racial equity and ensure mpox does not become entrenched in Black and brown communities, and ensure they are protected from future outbreaks. If we don’t take these actions, will this emergency really be over in January?

Ofole Mgbako, MD, is assistant professor in the Department of Medicine and the Department of Population Health at NYU Grossman School of Medicine. He is also section chief of infectious diseases at NYC Health + Hospitals/Bellevue and co-clinical pillar lead at the NYU Langone Institute for Excellence in Health Equity.