Host and producer: Yi Ding
Guests: JiJi Wong and Dr. Luo Yiming
Legal research support: Bohao
Chinese editor: Jiangnan
English translator: JiJi Wong
Writer’s note: This piece was originally published as a Mandarin podcast audio, published on WeChat August '22. The original script was written in English and forms the basis for this article format.
On August 4th, the White House declared monkeypox a public health emergency. In my opinion, this is just a reflection of the government's action, but some deeply involved members have told told me that the US Centers for Disease Control and Prevention (hereinafter referred to as the CDC) has been met with angry criticism from gay men, Disabled people, and many other vulnerable groups who have been deeply affected by monkeypox.
From JiJi, “The early stages of MPXV public health policy mirrors early handling of COVID-19, and mimics the failure of the US government in educating and protecting its citizens. The CDC lied about MPXV being airborne, choosing to emphasize its transmission during sex without regard to any other forms of transmission such as from45 touching infected clothing. This aided in furthering stigma against gay men because everyone then assumed it was an STI only. The CDC only put the airborne transmission information back up after protests from queer disabled people. Their lack of honesty in educating the public has led to a dangerous gap in information, especially for those who may be more heavily affected, such as people with skin conditions, who do not know they are at high risk.”
JiJi is a member of the Disabled community. The first time I heard their opinion, I was very surprised. Who would have thought that even the direct medical question of "is monkeypox airborne" could cause huge controversy? The CDC's inconsistency, whether intentional or unintentional, has created distrust of medical authorities and even doctors. And that distrust may even be a more difficult chasm to heal than criticizing them for lying and homophobia.
How can this be?
“No matter how mild the infection is, we don't yet know what the sequelae are. Many different viruses can lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), causing severe disability and potentially causing some to become bedridden. For post-Covid patients, this is termed long Covid, but also affects monkeypox survivors. For monkeypox, until recently, it was shown on the CDC's website that it was airborne, as also indicated within scientific journal articles. The UKHSA (United Kingdom Health Security Agency) and WHO (World Health Organization) previously indicated that MPXV is airborne until recently when this information was recently removed from their websites, although archived pages remain."
In fact, due to their immunocompromised statuses, many Disabled people have been concerned about monkeypox for many years and are very familiar with all kinds of medical information, so when they chatted with me about monkeypox, they found that the CDC information was inconsistent with what they knew before. This inconsistency with previous knowledge has sparked anger and outrage in the community. Netizens even directly accused the CDC of lying and homophobia.
Such a strong accusation is hard to immediately believe, so I consulted a doctor who specializes in immunology about how to view this information change and misunderstanding. Since the initial epidemic, you may remember that many people just breathed freely until the CDC recognized airborne transmission in May 2021, which is 17 months after it was known of. The public sees the delay as doing immeasurable harm to the general public without clear guidance on how to protect themselves.
After graduating from Peking University, Dr. Luo Yiming is now working as a rheumatologist in a university hospital in New York (hereafter referred to as Dr. Luo). What does he think?
“Let me start with the spread of monkeypox. As recorded in humans prior to 2022, monkeypox only had local epidemics in Africa, while European and American countries would have sporadic imported cases every few years. Because of this, it was considered a disease that is not easily transmitted from person to person. Now, monkeypox has suddenly spread widely in Europe and the United States, which is completely unexpected. The exact reason for this is not clear, it may be the mutation of the virus itself, or it may be other unknown reasons.
Faced with such a new situation, scientific research requires a process, and when CDC formulates public health policies, it will inevitably change policies or recommendations based on the latest research results. We have also seen the same situation in the Covid pandemic. Therefore, it can be said that it is completely normal behavior for the CDC to change its statement, and it is abnormal to be immutable. Regarding the transmission of monkeypox, there is indeed limited research support that monkeypox may be transmitted through the respiratory tract to a certain extent, which is why the CDC was initially wary of this. However, the latest population research shows that 98% of monkeypox epidemics in Europe and the United States are males, and 95% of the spread is strongly suspected to be related to sexual behavior, which means that the respiratory tract is not the main route of transmission.
On the other hand, I totally agree that respiratory transmission of monkeypox is still possible, but I don't think it's something to be overly concerned about. Among the respiratory diseases, Covid and influenza are the most harmful to human health. Influenza kills tens of thousands of people a year, and the number for Covid is even higher. While monkeypox has been circulating in the United States for more than 3 months, the ability of respiratory transmission is controversial, and there have been zero deaths in the continental United States. On the other hand, N95 masks can completely block airborne transmission. Doctors rely on N95 to see Covid patients in the hospital. Therefore, even if the United States has canceled the mandatory mask order in all aspects, for those who are worried about their own health, wearing N95 masks indoors greatly reduces the risk.”
For example, is the risk low enough for the CDC message to be able to exclude airborne transmission? Why is there such a clear scientific explanation, and yet many netizens are still angry that the CDC has concealed important medical facts?
Let's listen to the perspective of JiJi, the disabled person just now, who had almost no worries about eczema until monkeypox. They believe that for the first time ever, eczema has become one of their major disability issues due to a mishandling of monkeypox public health strategies. As someone with the aforementioned ME/CFS, they told me that many like them are especially concerned about infection rates and post-viral disease:
“Covid strategy has shown us that monkeypox strategy will be equally bad if not worse, especially considering mpxv spreads in many different ways and we can’t even get people to mask, nevermind to not touch things when they go out. A mass vaccination strategy for Covid was ineffective at preventing infections and post viral illness at the rates the public assumes. Additionally, many people with eczema, psoriasis, and other skin issues either cannot get vaccinated at all or cannot come in contact with newly vaccinated people without becoming very ill. So if the CDC didn’t push homophobic rhetoric and actually approached vaccinations in a scientific way, disabled people with skin conditions should’ve gotten the first round of vacccinations bc we’re high risk. Eczema might not have felt disabling for me before as a primary health concern, but material conditions now render me more disabled now even though the conditions of my body have not changed. As more viruses spread, more and more people will be rendered high risk, immunocompromised, and disabled.”
“People with eczema are considered to have an autoimmune disorder, and though eczema by itself may not seem like a higher risk, the fact that they are immunocompromised and have open wounds on their skin heighten their risk for catching MPXV and having worse adverse reactions and therefore a higher chance of fatality. The CDC has chosen not to include this information on their website, but many immunocompromised people such as those with eczema and psoriasis have found this research alarming, as we have had to advocate for our lives without aid from a neglectful CDC.”
Regardless of the criticism of the CDC, without focus on the airborne transmission itself, the situation of the vaccine and medication is still very angering. On the issue of stigma, ordinary patients, doctors, and medical authority management institutions have a similar attitude.
From Dr. Luo: “In the public health crisis of monkeypox, the most regrettable thing is the hidden danger of stigmatization. The bottom line is that no matter how monkeypox spreads, stigmatization of a group is wrong, categorically wrong.”
From JiJi: “From a utilitarian perspective (public health outcome), stigmatization should be avoided because it could prevent infected people from coming forward, seeking care and alerting their close contacts. Generally, reduced stigma and reframing admitting to infection, self reporting, and reporting to close contacts through contact tracing and other means will boost prevention. It is important to destigmatize infection as a moral failure and instead focus on systemic public health failures of why there are global breakouts. However systemic responsibility should not negate personal responsibility, and therefore we need to recognize the part we play in best practices for reducing contact as a form of care work for our communities, which includes monitoring our health, informing our community members if you have put them at risk, and reporting if you are infected.”
In this public health crisis, there is still a lot to be done by the CDC.
From Dr. Luo: “Vaccines and drugs made for smallpox are also effective against monkeypox. Smallpox is a virus that has been eliminated from our society by human intervention. Only two laboratories in the world carry biological specimens, but the United States has an inexplicable fear of bioterrorist attacks, so it specifically encouraged pharmaceutical companies to develop new vaccines and drugs for smallpox, which were successfully developed just a few years ago. The previous smallpox vaccine used live attenuated virus, which is dangerous for eczema and immunosuppressed people; the new smallpox vaccine is safe for eczema and immunosuppressed people. At the same time, the United States is currently only using this safer new type of vaccine. Unfortunately, the bureaucracy of the US government is relatively grave, and the distribution efficiency of vaccines and drugs is extremely low, which is far from enough to meet the current needs. Hopefully, this problem can be gradually improved in the future.”