When I first contacted my primary care physician about some minor rectal discomfort that surfaced a couple of days after NY City’s Pride festivities in June, he and I both knew probably the most likely diagnosis: a sexually transmitted 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 build up flu-like symptoms — a fever peaking at 102F, night sweats, chills, aches, and pains — that increased in severity on the next couple of days. Worried I had also contracted COVID-19, I tested myself having an at-home rapid antigen test. It returned negative 3 days in a row.
As a pharmacology PhD candidate researching infectious diseases and a gay man surviving in NEW YORK, monkeypox have been on my mind since mid-May. Actually, I had even attemptedto get a vaccine the moment they truly became available, but I was struggling to secure a scheduled appointment. Following a fever-fueled deep dive in to the CDC website, I came across the prodromal phase of monkeypox illness was in keeping with my symptoms, and I raised my suspicions to my doctor. Four days after my symptoms began, my fever broke, however the rectal burning progressed to extreme and relentless pain so overwhelming I possibly could barely sit or sleep. This coincided with the looks of visible lesions: first on my arms and hands, then progressing to my back, trunk, and legs by the day’s end. These were firm, pimply bumps that soon converted into raised pustules with umbilications in the guts. The data that I had contracted monkeypox seemed undeniable.
I could look for care within my institution the next week, where infectious disease physicians petitioned the town Department of Health for testing on my behalf. The very next day, I was prescribed a training 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 begun to subside. While difficult to assess definitively predicated on personal experience, it appears my disease course was accelerated by tecovirimat treatment, and anecdotal evidence from other monkeypox patients corroborates this pattern.
WHEN I isolated in the home, looking forward to my lesions to scab over, fall off, and heal — an 18-day ordeal from begin to finish — I began posting on social media marketing: Instagram stories concerning the progression of my illness, tweets about government failure to supply enough vaccines, and a Medium article outlining my symptoms and emotions, to mention a few. Apart from making me feel less alone, sharing my story engendered other results. Disseminating monkeypox facts within an accessible and easily understandable way resonated with my followers and led many to talk about these details with others. Additionally, I built a residential area with other monkeypox patients, developing a network of informal connections that later proved invaluable.
During this time period, I realized how privileged I was, with that said. Due to my position within academia, I possessed a knowledge of monkeypox and its own epidemiology that allowed me to create my concerns to my PCP. I was in a distinctive position to advocate for myself and my health, and for that reason, I received treatment inside a week of symptom onset and likely expedited my healing up process.
Meanwhile, a large number of people reached out if you ask me, describing rashes and pain that mimicked mine and desperately asking how I accessed testing and treatment. I was quick to talk about tips — these will be the doctors most acquainted with tecovirimat, this may be the number to require a post-exposure prophylactic vaccine, Epsom salts and cocoa butter suppositories are lifesavers with regards to the pain. But I couldn’t help but wonder why the duty for finding these resources was falling on us, the sufferers of the condition. 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 talk about my story and campaign for a far more aggressive reaction to controlling the spread of monkeypox. Though I’m now fully healed and out of isolation, I continue steadily to take part in these efforts.
At this stage in the outbreak, substantial barriers to vaccination, testing, and treatment remain preventing us from adequately containing monkeypox. To rectify this, national officials must immediately and dramatically raise the option of the Jynneos vaccine. As the U.S. announced plans the other day to create 786,000 additional monkeypox vaccine doses available “as quickly as possible,” it’s critical they are accessible to queer social and sexual networks encompassing those most at an increased risk. This necessitates intentional programs to make sure equity for populations which have historically received less usage of healthcare, including communities of color, people experiencing homelessness, and the ones that are uninsured or underinsured.
Furthermore, monkeypox testing capacity must continue being expanded, and CDC should initiate an informational campaign to see all practicing clinicians of the signs or symptoms which should prompt testing, including less “classic” monkeypox symptoms like genital lesions and proctitis. Research also needs to be undertaken to find out whether using preexisting nucleic acid-based tests on saliva samples could uncover monkeypox infection through the prodrome, potentially identifying contagious patients sooner and tempering spread of the herpes virus.
Moreover, though CDC has modified certain requirements for accessing tecovirimat, the EA-IND protocol continues to generate barriers to look after 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 might not have the resources to take part in such endeavors.
Lastly, local governments should institute paid sick leave policies, much like programs instituted for COVID-19, offering financial compensation for patients who test positive for monkeypox. The lengthy isolation time necessary for monkeypox imposes an untenable financial burden on those that contract it. Making certain people can support themselves financially will permit them to remain home and protect their communities consequently.
By working together, staying informed, and pushing for a far more comprehensive government response, patients and providers might help bring this monkeypox outbreak in order.
Kyle Planck is really a pharmacology PhD candidate at the Weill Cornell Graduate School of Medical Sciences in NEW YORK.