Matt Ford, an actor-writer-singer based out of Los Angeles and New York, is one of the first known monkeypox patients to share his story publicly on social media.
Ford on June 27 shared a TikTok video posted to Twitter on what it was like to have monkeypox, weeks before it was declared a national public health emergency.
“So my name’s Matt, I have monkeypox … and you don’t want it,” he says. “And I can tell you what it’s like to have it, because I currently do, as you can clearly see.”
Ford points to small, red spots in the stubble on his face as well as on his arms and hands, sharing that he counted more than 25 in all, including some in more sensitive areas. Those, he said, tended to be the most painful.
“As in it is so painful I had to go to my doctor and get painkillers just to be able to go to sleep,” he said in the post titled “Monkeypox PSA.”
He experienced sore throat, cough, fever, chills, sweating at night and swollen lymph nodes before these rashes.
It’s shared in an open and conversational way — filling a void — when most health officials, due to privacy concerns, will only share minimal information on confirmed cases. Ford has since been featured in media stories nationwide, including CNN and The New York Times, offering a voice for patients.
The Hawaii Department of Health has so far reported 25 cases of monkeypox in the state since early June, with the latest two identified Friday. The number has doubled over just the past month, but there is scant information locally on what the illnesses have been like firsthand.
Hawaii’s first monkeypox case was reported June 3 in an Oahu adult resident who had traveled to an area with confirmed cases, and was subsequently hospitalized at Tripler Army Medical Center.
Monkeypox cases have since been identified in all four major counties, with the count including three nonresidents.
The only information shared by DOH is whether they are adult residents or nonresidents, island of detection and connections to travel or earlier cases. Most cases have been described as mild to moderate.
“It’s one thing to know there’s a monkeypox outbreak happening,” said Ford in his post. “It’s another to know exactly what that means for someone’s body and particularly what that means if it happens to a friend or to you.”
Ford, admitting he is not a doctor, has since posted anecdotal advice online, adding that “this experience might be awful, but it is temporary.”
Community outreach
As the number of cases continues to grow exponentially across the U.S. and the globe, health officials are walking a fine line between reaching out to those most affected while being careful not to stigmatize a marginalized community.
According to a Centers for Disease Control and Prevention report, 99% of U.S. cases occurred in men, 94% of whom reported recent male-to-male sexual or close intimate contact. The median age is 35, according to a CDC report.
Given that gay, bisexual and other men who have sex with men are disproportionately affected, CDC said, public health efforts should prioritize the demographic for prevention and testing.
Walter Enriquez, founder of Gay Island Guide, is using his broad social media platform to help with outreach to the LGBTQ community.
“I feel a sense of responsibility to take care of our LGBT community,” said Enriquez, who advocated for getting the vaccines out sooner rather than waiting.
In mid-August, Enriquez hosted a “tea time” talk-story with DOH on his Instagram Live broadcast to field questions on monkeypox, including vaccinations and the newly approved technique — which administers the Jynneos vaccine under the skin instead of into muscle tissue.
The federally approved technique allows administrators to offer up to five doses per vial, expanding the number available for vaccines in limited supply. DOH said vaccines administered intradermally provide the same, high level of protection from the monkeypox virus.
Gay Island Guide also partnered with the Waianae Coast Comprehensive Health Center to offer vaccinations at one of its recent events — a “Splash-Inn Pool Party” in Kapolei. Out of about 150 attendees, Enriquez said about 30 received a vaccination shot.
He is exploring other opportunities to offer vaccines at upcoming events, and posts information at a dedicated web page at gay islandguide.net/monkeypox.
“I’ve been a very strong advocate for getting vaccines out,” said Enriquez, who received a Jynneos shot at the pool party.
Enriquez is encouraging people to get the vaccines now because Jynneos is administered as two shots, with at least four weeks in between. Although a person who receives the vaccine will start to build protection after the first dose, peak immunity kicks in two weeks after the second dose. DOH is taking appointments for second doses.
Getting vaccinations now, he said, would be ideal in advance of the Gay Bowl in early October, and Honolulu Pride events, which are returning in mid-October, with a parade and festival in Waikiki.
Enriquez said the LGBTQ community overall is receptive to the vaccines because of history.
“Even during COVID, LGBT nationally was one of the highest percentages to go out and get their vaccine,” he said. “They learned from HIV/AIDS decades ago, being stigmatized as a gay disease, they learned that lesson. They tend to be a little more reactive and responsible when it comes to public health.”
While the community’s reaction was “here we go again,” especially with the ongoing COVID-19 pandemic, Enriquez said there is no panic at this point.
Hawaii risk remains low
DOH continues to say the risk to most Hawaii residents remains low, but acknowledges that the virus is in the community since not all of the 25 cases can directly be linked to one another.
The state, which has administered more than 2,000 doses of Jynneos to date, recently expanded eligibility for the monkeypox vaccine.
Eligibility is available to those who have had close contact with someone with known or suspected monkeypox in the past 14 days; gay, bisexual and other men who have sex with men and transgender individuals who have multiple or anonymous sex partners; and people with severe immune compromise and a household member of a sex partner at high risk for monkeypox.
Additionally, those in certain occupational risk groups, including lab and health care workers at risk of exposure, are eligible for the vaccines.
Minors also can get vaccinated with parental consent, DOH said, which previously limited the vaccines to those ages 18 and older.
DOH says in its news releases that “current cases, both nationally and in Hawaii, are primarily spreading among social networks of gay, bisexual, and other men who have sex with men. However, anyone who has close contact with someone with monkeypox is at risk of infection, regardless of sexual orientation or gender identity.”
The virus does not discriminate, said Tim McCormick, director of DOH’s Harm Reduction Services Branch during a recent forum hosted by the Hawaii Health & Harm Reduction Center.
“This is not about someone’s sexual orientation,” he said. “Anyone exposed to it can get monkeypox. It’s not about who they are, it’s about that exposure.”
At the same time, it is critical to DOH that clear messaging is getting to the people most impacted, and the forum encouraged people to discuss monkeypox with friends and family at risk and what they can do to prevent it.
“If you are at risk for monkeypox, get vaccinated,” he said. “Please don’t let stigma prevent you from doing that. Support other people in our community. Don’t let that stigma or shame take any hold.”
How virus spreads
According to CDC, monkeypox is primarily spread through skin-to-skin contact with infectious lesions, which can occur during intimate contact or touching linens or towels used by someone with monkeypox.
DOH says monkeypox also can spread through large respiratory droplets, which cannot travel more than a few feet, so prolonged contact is required.
Health experts say it is not spread so much through a casual handshake or public surfaces, and that it is less contagious than COVID-19.
Scientists are still researching whether the virus can be spread by someone with no symptoms, how often it is spread through respiratory secretions and whether monkeypox can be spread through semen, urine or feces.
Monkeypox was first discovered in 1958 in research monkeys in Denmark — thus, the name — although the source of the disease remains unknown.
The first human case was identified in an infant boy in the Democratic Republic of Congo in 1970, according to the World Health Organization. Prior to the recent international outbreak, the disease occurred primarily in Central and West Africa.
In 2003 the first monkeypox outbreak outside of Africa was in the U.S. and linked to contact with infected pet prairie dogs that had been housed with Gambian pouched rats. CDC reported 71 cases in several states, including Wisconsin, Illinois and Ohio.
The U.S. confirmed its first case — announced May 18 — in a man in Massachusetts.
Infection often begins with flu-like symptoms such as fever, headache, muscle aches, chills, exhaustion and swollen lymph nodes in the neck, underarm or groin area, followed by rashes that initially look like pimples or blisters.
These rashes can occur on the face, inside the mouth and on the hands, feet, chest, genitals or anus.
Changing trends
But not all cases in this outbreak are following classical descriptions. CDC said some people get a rash first, followed by fever or other symptoms, while others experience only a rash.
There might only be a few lesions or a single lesion and other atypical symptoms, including anal pain and rectal bleeding, which have frequently been reported in the current outbreak.
The latest CDC technical report on monkeypox, updated Thursday, shows recent signs the rate of growth is slowing.
Caitlin Rivers, an epidemiologist and assistant professor at the Johns Hopkins Bloomberg School of Public Health, noted the doubling time of the outbreak has slowed from eight days to 25 days, similar to trajectories seen in Spain, Portugal and the United Kingdom.
But there are still uncertainties due to reporting delays and missing data, and states that were hit early, such as California and New York, are slowing while other states, like Virginia and Indiana, are picking up steam.
“Although the majority of monkeypox cases remain concentrated in gay, bisexual, and other men who have sex with men (MSM), cases are increasingly being reported in other populations,” she noted in a Force of Infection newsletter.
Men with no recent male-to-male sexual contact made up about 20% of cases in recent weeks, while women and people of another gender identity made up a small, but growing slice of total cases. The CDC report also noted seven confirmed and 45 probable pediatric cases in the U.S.
On July 23, WHO Director-General Tedros Ghebreyesus declared monkeypox a public health emergency of international concern. Shortly after, on Aug. 4, the U.S. Department of Health and Human Services declared monkeypox a public health emergency.
Globally, there have been more than 53,000 confirmed cases in 100 locations and 15 deaths, according to the CDC. Across the U.S. and Puerto Rico, as of Friday, there have been nearly 20,000 confirmed monkeypox and orthopoxvirus cases.
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Monkeypox vaccines
Appointments for Jynneos vaccines for monkeypox are available via DOH by calling 808-586-4462 or online at health.hawaii.gov/docd/mpxvax. Other providers of the Jynneos vaccines include:
Oahu
>> Waianae Coast Comprehensive Health Center (Waianae and Kapolei), 808-427-0442
>> Hawaii Health & Harm Reduction Center (Honolulu), 808-521-2437
>> Kaiser Permanente (Mapunapuna), 808-432-2000, prompt 1
Maui
>> Malama I Ke Ola Health Center, 808-871-7772
Kauai
>> Malama Pono Health Services, 808-246-9577
Hawaii island
>> Hamakua-Kohala Health, 808-930-2751
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6 things to know about monkeypox
>> It is part of the same family of viruses as variola virus, the virus that causes smallpox. Monkeypox is not related to chickenpox.
>> Despite being called monkeypox, the source of the disease is not known. Its discovery in 1958 in monkeys kept for research in Denmark led to the name monkeypox. WHO is holding an open forum to rename the disease.
>> It can spread to anyone through close, personal, often skin-to-skin contact, including direct contact with rashes or respiratory secretions of a person with monkeypox or clothing, bedding or towels used by someone with monkeypox. A pregnant person can also spread the virus to their fetus through their placenta.
>> Symptoms usually start within three weeks of exposure. Monkeypox can be spread from the time symptoms start until the rash has healed, all scabs have fallen off and a fresh layer of skin has formed. The illness typically lasts two to four weeks. In most cases symptoms go away on their own.
>> It is a zoonotic disease, meaning it can spread between animals and people. CDC recommends anyone with monkeypox to avoid contact with pets during home isolation. Pets that had close contact (petting, shared sleeping areas and food) with a symptomatic person should be kept away from other animals and people for 21 days after the most recent contact. There has been a single report of sick people transmitting monkeypox to a pet dog.
>> FDA has approved the Jynneos vaccine for monkeypox. Jynneos contains a weakened vaccinia virus — related to monkeypox and smallpox viruses — that cannot replicate in human cells. Two doses are administered at least four weeks apart. Vaccines can protect people against monkeypox before an exposure or prevent the development of the disease if given within four days of exposure. If given four to 14 days after exposure, vaccination may reduce symptoms of the disease. Peak immunity is expected 14 days after the second dose.
Source: WHO, CDC, Yale Medicine
