When I first contacted my primary care physician about some minor rectal discomfort that surfaced a few days after New York City’s Pride festivities in June, he and I both knew the most likely diagnosis: a sexually transmitted bacterial infection. We performed an STI screen, and I went home to await the seemingly inevitable positive result and subsequent antibiotics prescription. What I didn’t expect was to develop flu-like symptoms — a fever peaking at 102°F, night sweats, chills, aches, and pains — that increased in severity over the next few days. Worried I had also contracted COVID-19, I tested myself with an at-home rapid antigen test. It came back negative 3 days in a row.
As a pharmacology PhD candidate researching infectious diseases and a gay man living in New York City, monkeypox had been on my mind since mid-May. In fact, I had even attempted to acquire a vaccine as soon as they became available, but I was unable to secure an appointment. After a fever-fueled deep dive into the CDC website, I discovered the prodromal phase of monkeypox illness was consistent with my symptoms, and I brought up my suspicions to my doctor. Four days after my symptoms began, my fever broke, but the rectal burning progressed to extreme and relentless pain so overwhelming I could barely sit or sleep. This coincided with the appearance of visible lesions: first on my arms and hands, then progressing to my back, trunk, and legs by the day’s end. They were firm, pimply bumps that soon turned into raised pustules with umbilications in the center. The evidence that I had contracted monkeypox seemed undeniable.
I was able to seek out care at my institution the following week, where infectious disease physicians petitioned the City Department of Health for testing on my behalf. The next day, I was prescribed a course of the antiviral drug tecovirimat (Tpoxx) through CDC’s expanded access Investigational New Drug (EA-IND) protocol, an onerous process handled by the hospital’s clinical trials team. Within 2 days of beginning tecovirimat, I experienced dramatic symptom abatement: the newer lesions that had appeared on my skin flattened out and became less prominent, and my pain began to subside. While difficult to assess definitively based on personal experience, it seems my disease course was accelerated by tecovirimat treatment, and anecdotal evidence from other monkeypox patients corroborates this pattern.
As I isolated at home, waiting for my lesions to scab over, fall off, and heal — an 18-day ordeal from start to finish — I began posting on social media: Instagram stories about the progression of my illness, tweets about government failure to provide enough vaccines, and a Medium article outlining my symptoms and emotions, to name a few. Aside from making me feel less alone, sharing my story engendered other positive effects. Disseminating monkeypox facts in an accessible and easily understandable way resonated with my followers and led many to share this information with others. Additionally, I built a community with other monkeypox patients, creating a network of informal connections that later proved invaluable.
During this time, I realized how privileged I was, all things considered. Because of my position within academia, I possessed an awareness of monkeypox and its epidemiology that allowed me to bring my concerns to my PCP. I was in a unique position to advocate for myself and my health, and as a result, I received pain relief within a week of symptom onset and likely expedited my healing process.
Meanwhile, dozens of people reached out to me, describing rashes and pain that mimicked mine and desperately asking how I accessed testing and treatment. I was quick to share tips — these are the doctors most familiar with tecovirimat, this is the number to call for a post-exposure prophylactic vaccine, Epsom salts and cocoa butter suppositories are lifesavers when it comes to the pain. But I couldn’t help but wonder why the responsibility for finding these resources was falling on us, the sufferers of the disease. My frustration spurred me into action, rousing me to write letters to politicians at the national, state, and local levels, join monkeypox advocacy groups, and conduct several media interviews to share my story and campaign for a more aggressive response to controlling the spread of monkeypox. Though I am now fully healed and out of isolation, I continue to participate in these efforts.
At this point in the outbreak, substantial barriers to vaccination, testing, and treatment are still preventing us from adequately containing monkeypox. To rectify this, national officials must immediately and dramatically increase the availability of the Jynneos vaccine. While the U.S. announced plans last week to make 786,000 additional monkeypox vaccine doses available “as soon as possible,” it’s critical these are accessible to queer social and sexual networks encompassing those most at risk. This necessitates intentional programs to assure equity for populations that have historically received less access to healthcare, including communities of color, people experiencing homelessness, and those who are uninsured or underinsured.
Furthermore, monkeypox testing capacity must continue to be expanded, and CDC should initiate an informational campaign to inform all practicing clinicians of the signs and symptoms that should prompt testing, including less “classic” monkeypox symptoms like genital lesions and proctitis. Research should also be undertaken to determine whether using preexisting nucleic acid-based tests on saliva samples could uncover monkeypox infection during the prodrome, potentially identifying contagious patients sooner and tempering spread of the virus.
Moreover, though CDC has recently modified the requirements for accessing tecovirimat, the EA-IND protocol continues to create barriers to care for many patients who need relief. With the dramatic surge in monkeypox cases, a sufficiently large patient population exists to initiate placebo-controlled, randomized clinical trials for tecovirimat efficacy. These should become optional for patients and providers who may not have the resources to participate in such endeavors.
Lastly, local governments should institute paid sick leave policies, similar to programs instituted for COVID-19, that provide financial compensation for patients who test positive for monkeypox. The lengthy isolation time required for monkeypox imposes an untenable financial burden on those who contract it. Ensuring that people can support themselves financially will permit them to stay home and protect their communities as a result.
By working together, staying informed, and pushing for a more comprehensive government response, patients and providers can help bring this monkeypox outbreak under control.
Kyle Planck is a pharmacology PhD candidate at the Weill Cornell Graduate School of Medical Sciences in New York City.