The Impotence of Patients or the Importance of Patience

If you’re reading this first, check out my initial article in our COVID-19 series. This is the second article in the series. I’m an Infectious Disease researcher and MPH working with ending epidemics. I also happen to work in Workforce Development/Life Sciences and have a background in Economics, PoliSci, History, Law, Policy, Healthcare, Counseling, Advocacy, and Marketing. 

 As a patient advocate for over ten years now, when I look back at the majority of my moments as a patient, I look back at my powerlessness. For the vast majority of patients, powerlessness is an overwhelming reality when it takes hold. It can be from the initial diagnosis. It can be when certain symptoms begin or often when they find out that there are no treatments, even on the horizon. In my case, I was lucky that treatments were developed in my lifetime to cure my of my lifelong battle with Hepatitis C. But those fears, that impotence, is very real and very common, at least for some time in many patients. 

Norovirus is relatively harmless for most folks with healthy immune systems. Still, for the elderly or folks with hampered immune systems, it can be a significant challenge. In rare instances, death can occur. On cruise ships over the past decades, Noroviruses have become so common that most cruise ships have enhanced safety requirements to protect passengers and staff. The CDC has managed these cases and provided guidance in this arena for as long. The CDC does this through the Vessel Sanitation Program, since 1975 when it was created. The CDC indicates its specific jurisdiction of cruise ships carrying more than 13 passengers and a foreign itinerary in US ports.


 It is, and it isn’t; it’s also about the legal stuff and vaccine “passports” as well as a spiritual continuation of When Captors Masquerade as Allies. Let’s talk about the state, which will likely be a consistent reservoir for COVID-19 and new Variants Of Concern, Florida. And has led the country in growing VOCs, having the highest amount of VOCs in April prior to the new COVID-19 dashboard, and currently as of July 2 , maintains 2,381 over the two week period, vs. 2,598 in CA, a state with twice its population and equally a destination state for tourism. Florida in April had double the cases of any other State among VOCs, and that trend seems to be continuing with DeSantis’ policies standing in ignorant defiance of how infectious disease works.

 Aside: my previous article centered on the CDC’s failing of removing mask requirements prematurely and charging ahead, ignoring evidence of transmission among vaccinated populations amid rise in VOCs. While the vaccine does appear to significantly reduce transmission, it does not appear to eliminate it, as even the CDC states. What I didn’t mention in the previous article was a likely important factor, that in part, the decision was made in favor of reaching political benchmarks and having big fundraising efforts. Memorial Day is traditionally the beginning of summer, and BBQs bring in local and national political dollars. But there are a dozen awful factors in this choice, none of which are scientific in the least. The logic of doing this to encourage FOMO for the vaccine is disturbingly reminiscent of Lt. Gov Dan Patrick’s choice statements regarding sacrificing the elderly for the economy. But intent isn’t so easy to assume, so now let’s focus on an area the CDC has been doing well on but has a different political fight.

Would you, could you on a boat?

So the CDC’s VSP has always been the only one with jurisdiction here. Cruise ships have a very specific carve-out due to the health hazards historically associated with Cruise ships. So why do I care about Cruise ships? I don’t really; my personal experiences leave much to be desired, but this situation in Florida is problematic at best, because it can easily lead to higher importation of cases when not monitored properly.

A Florida judge sided with DeSantis on an incredibly weak premise. The basis of the lawsuit is a fundamental loss of tax revenues due to the conditional sailing order given by the CDC. 

 Here’s where the DeSantis Magic happens, though: One of the underpinning components of their comparison is that the CDC’s order fails to recognize the prevalence of vaccines. DeSantis created a policy that fines cruise ship operators $5000 for each customer who is asked to provide proof of vaccination

 DeSantis is arguing on one hand that the CDC’s sailing limits restrict Florida’s revenues while claiming that vaccine prevalence is so widespread, so much so, he’s willing to punish the industry he’s claiming to protect. What’s even weirder here, both cruise ship passengers and companies seem pretty happy with the enhanced protections, something DeSantis doesn’t seem to be considering in his stand against reasonable and basic public health measures.

As we consider these interactions on a national level and see how inconsistent actions among people with authority wielding these clubs against one another. Where a disagreement between federal marshalls who refuse to disclose vaccination status meets a judge who demands to see it while refusing masks in his courtroom. This interaction showcases the challenges when political intention creeps into our bureaucracy; both parties seem to be acting on partial information. The Judge, being in a public court, should hold that all people inside are wearing masks when vaccination status is unknown, while the Marshalls should have known to comply with the court, providing the documentation. The CDC and Circuit courts generally agree on the following: 

In courtrooms, if only vaccinated people are in the courtroom, masks will not be required. If anyone is unvaccinated or the vaccination status is unknown, masks will be required unless the presiding Judge permits otherwise.

But it gets very tricky when the CDC stops holding the bar up for the country regarding actions for public health safety. State courts, even county courts (this site lists them all out), all have different rules regarding vaccination, status, and masks during the pandemic.

 One central theme, though during all of this pandemic, has been folks blatantly defying public health orders for a surprising number of reasons. Reasons varying from political free speech, their freedom to breathe, believing it’s worse for your health, believing they don’t work, to just not wanting to. 

woman looking at sea while sitting on beach
Photo by Pixabay on

These actions bear responsibility for facilitating the spread of the virus. As a person who lived with Hep C nearly all my life, I was constantly aware of the very real potential jail time which could come into play if I intentionally hid my positive status with a sexual partner even though Hep C isnt’ an STD, and they were to be infected. These rules regarding STDs disproportionately affected the LGBTQ community, and thankfully these laws are being revisited. So there are circumstances where we can see exceptions, like for folks who are vulnerable and could not wear a mask. But here, what we’re seeing is closer to intentionally infecting others, the goals of anti-maskers are wide, but some do want to naturally create herd immunity(which would make more VOCS just like Manaus), in spite of how little we know. (side note the Unbiased Science folks helped this one, it’s a solid article.)

The trouble again comes before with anti-maskers, and soon with the maskueraders, their actions likely add not only to further spread of the virus but also strain community relationships and introduce stress and tension into environments.

 This is why it’s unfortunate that a state with a historically slow clemency process and a governor who continued this has been so blatantly political as to pardon violators of covid-19 recommendations in Florida.

 Actions like these are willful defiance of a uniform strategy for public health, something essential for any public health strategy: unity. To encourage maskueraders by pardoning their crimes of willful defiance of public health orders during a national emergency, his actions also discourage trust in the CDC and public health institutions. 

The importance of patience is essential to our survival as a nation. 

It is important that we learn from what has happened and to move forward, saving as many lives as possible while Building Back Better™.  COVID-19 ranks third regarding death in 2020, destroying 5.5 million years of life. With over 600,000 dead, there should be no insertion of politics into this ongoing global natural disaster. Moving forward together, with friends, family, neighbors, our communities, countries, and the world as a whole. In contributing to covax and other projects which share resources for fighting COVID-19, we ensure our mutual success, however, vaccine equity seems further off. Some countries outright refuse the vaccine; others, like Brazil, likely intentionally stalled.

There is a considerable race to vaccinate and protect as many people as possible, as new variants of concern pop up, which have increased transmissibility or immune escape. On a global scale considering India and Australia’s recent surges, our premature revelry in the US will likely lead to unnecessary deaths. Thankfully Australia has mechanisms acting in unity which may help them considerably in containing Sars-CoV-2 in Australia. But importantly, from the Australia case, just as in many circumstances in the US, the overwhelming majority of cases occur among unvaccinated individuals and are increasingly VOCs

Image of viruses from DW

As the Delta variant displaces its progenitor rapidly, more and more public health officials are encouraging mask use, including the WHO,   Los Angeles and more recently, Sacramento. Folks who are immunized should likely wear a mask indoors, in crowds, or in mass transit for the duration of the pandemic.

 It’s good that there is something we can do about this, but that doesn’t make its spread any more unnerving. And more recently, a new variation of Delta has arrived, as Delta Plus. 

 VOCs like Delta and Delta Plus throw a big wrench in the reality of data being presented. In the US, an overwhelming majority, almost 99% of severe cases, occur in folks who have yet to get vaccinated. So let’s focus on those who are vaccinated but test positive for covid-19, Breakthrough infections/cases as they’re called. 

 An important consideration: Breakthrough Infections, bottom line, does everyone need a test?

 Breakthrough Infections are complicated, and while early on, the majority were asymptomatic, about 10% of the 10,262 breakthrough cases as of April 30,2021, were hospitalized, and 2%(160) died. The median age being 82, indicates that in the rare cases of breakthrough infection, death trends skewed towards older; perhaps importantly, 64% of hospitalized cases were VOCs. It’s also important to note that there are likely significantly more asymptomatic cases of COVID-19 among the vaccinated population. However, their infection may never be noticed or included in data, due in part to the lack of priority on testing among vaccinated individuals at this time. Deprioritizing testing among a population can cause testing bias in the system, which may impact the data.

Some things to consider here: “In Israel, where 57.1 percent population is fully vaccinated, about half of Delta variant infections occurred among those fully vaccinated with the Pfizer shots. This prompted Israel to reinstate wearing masks indoors.” Much like the WHO, mask requirements are as simple as I laid them out at the end of the first part of this article series.

Important note: Vaccination does the best job in preventing severe symptoms and death regarding COVID-19 despite what clickbait headlines from leading newspapers might suggest.

Without the CDC holding the bar on what mask and vaccine standards we should maintain, we end up with more chaos than needed during a very wild economic time. A hospital in Texas is fighting for its ability to ensure that its employees are vaccinated, facing a lawsuit from 117 employees who did not want to get the vaccine. Cases like this will come about across the country; however, there is no standing, so it is unlikely many will succeed. Without proper guidance from the CDC as to best practices, at the very least, states all have incredibly different policies, which will likely only further expand reservoirs, as mentioned in my previous article. Reservoirs naturally encourage new VOCS if they have a high enough population of unvaccinated folks. It’s also important to know that now the Delta variant accounts for the majority of new infected cases. All the more reason to get vaccinated to reduce the potential for VOCs.

Drake Meme encouraging vaccination to reduce VOCs

On safeguards towards containment efforts, yes, Taiwan has shown us, it can be contained, so long as the will to do so exists.

 Here’s something which may or may surprise you: I’m not for vaccine passports, but I’m also not necessarily opposed to them, as they don’t actually impede on privacy or health status information. 

Vaccine passports are complicated, and honestly, privacy is the least important aspect. Accessibility, equity, and vaccine nationalism make the conversation not as cut and dry as one might expect. You might be surprised to find that the WHO isn’t for vaccine passports. They are building a kind of neutral digital certificate and architecture, however, but it’s not really the same thing as an individualized passport.

 California is attempting something similar, but still uniquely Californian, in that, it only applies to places you have to pay for. Conceptually, it limits the ID requirement to systems that need to know the information due to increased risk and a cost barrier, and who knows when it will actually be instituted, or how it may yet change.

 Different but related, just on more economic, legal matters regarding COVID-19, more lawsuits are going forward against governments for loss of revenue. A reasonable consideration for small and medium-sized businesses who suffer(ed) or discontinued during the pandemic. We’ll take a deeper dive into the economics of all of this in the next article: When the Economic Flywheel Isn’t Flying.

These solutions to vaccine status awareness may prove helpful in time if there is social acceptance. But again, this harkens back to an earlier message: unity. Public Health efforts, when not unified, fluster and have significant holes. Public health efforts require immense trust, buy-in, and consideration from each community involved. Without all of walking the same route of protection, it weakens any potential defense. So, however, we move forward with vaccination identification, we should hope and encourage equitable solutions.

 Unfortunately, a pandemic affects the world, which also means that as VOCs spread around the world, we are gravely affected by each other misdeeds, misconceptions, or misunderstandings regarding COVID-19. It also means that vaccination efforts be universal across the globe to ensure the eradication of the threat of COVID-19, much as we’ve done for Smallpox and Polio, rather than as we’ve done for Malaria, HIV or Viral Hepatitis, which run rampant around the world, killing millions each year while the US has significantly reduced death counts comparatively. Smallpox and Polio had global vaccination efforts with few restrictions on patents, while HIV and Viral Hepatitis face patent restrictions (which create temporary monopolistic pricing for the patent holders), among dozens of other potential barriers. There are a handful of efforts to like COVAX and #FreeTheVaccine, which are trying different ways to encourage the sharing of the vaccine to rid the world of this problem. 

 It’s important to remember that Polio was solved here in the US so quickly because of the refusal of Dr. Jonas Salk to patent the Polio Vaccine. In his famous words: “Could you patent the Sun?” A comment not only inspires parable but an essential legal reference to the reality of products of nature. Obviously, when a product like mRNA comes into play, it’s a lot more removed than a more typical product of nature, so the logic here is more complicated. Here, we look at the result required for global stability: universal vaccine availability and seek to understand solutions to that complex problem. While the United States has held that patents in this specific circumstance would benefit from flexibility, Germany, has strictly opposed such patent sharing. Mind you, in the US, multinational pharma companies are still fighting this stance. So it’s unlikely that patent sharing, waiving, or other exceptions will pass without obstacles.

 This gets even more complicated when Belt and Road and China’s vax effort is considered, but that’s for next time. Vaccine Nationalism gets weird after all, even within the “the special relationship.”

 Another organization is attempting a different strategy; the Global Immunization Action Network Team (GIANT) is a global resolve to improve global public health outcomes by combating vaccine hesitancy through effective, sensitive, science-based communication and education. Vaccine Hesitancy is a complicated demon to face. The other side of vaccine availability and equitable access is the desire to understand vaccination’s safety benefits. GIANT isn’t focused on COVID-19 specifically, but it encompasses it; but for those like myself working with End The Epidemics and No Hep 2030, among other elimination initiatives, comorbidity is a big target we’re focusing on. Comorbidity is having multiple infectious diseases or conditions. Comorbidity just amplifies the problem at hand, whatever the condition. COVID-19, being so widespread, has complicated life for folks with chronic conditions looking to avoid additional comorbidity because that could mean death. So GIANT’s approach towards messaging and education are critical while figuring out how to make the vaccine more accessible.

 Okay, again, this is terrible! Infighting, and confusion, lawsuits galore! What can anyone do?

If you can, get vaccinated, Me, getting vaccinated July 5th.

As a transplant recipient , I’ve been eligible for the vaccine in CA, since February. But in the heat of my MPH, learning my chair had an adverse reaction to the vaccine reminded me of the importance of timing. Timing for side effects is something folks with chronic conditions have to figure out with treatments, vaccines, and other health procedures. I’ve personally had to plan 6 Hep C Treatments, thankfully. The new ones aren’t so bad as far as side effects, But the old pegylated interferon and Ribavirin are an awful experience. Months of exhaustion, mood swings, skin issues, and significant blood loss were important to time these in my life. I injected on Fridays to have the weekend to take the brunt of each interferon injection, which felt like the nights of a thousand flus. Between my MPH Thesis, new caretaking needs for a family member, some personal health concerns, and other serious projects, I wanted to make sure that if the vaccine had any serious side effects, that it would be on my time, that it wouldn’t be too much of an additional burden.

I also was watching several studies on liver transplant patients to see if the outcomes were different. (As a transplant recipient, according to a recent study, mortality is about 20% with COVID-19, but with the vaccine currently, there have been no reported deaths due to COVID-19 among transplant recipients, so although we don’t know how well the vaccine confers immunity in transplant patients due to their immunosuppression, we can tell the outcomes.) Importantly, I also note that I don’t have any allergies, so I knew I could pop over to Vons and take it. If I had more common allergies, I personally would have taken it at a clinic, JIC. So I arrived at yesterday, at a local Vons. For those who can vaccinate, please do, and encourage folks around you to do so as well. Important note: There are hundreds of thousands of folks in my situation who planned when and how to vaccinate because for us, it’s not as simple as walking in. There are plenty of folks with chronic conditions who decided, “you know what, I’m just going to go for it,” and we appreciate their choice to lead us through the crisis. But the choice of when to vaccinate can be complicated. So it’s essential when we talk about vaccination with our close friends and family that we also keep this in mind. It’s also important to remember that among all the revelry, this pandemic isn’t over.

FF Meme about family and getting vaccinated

Honestly, if you are not in a position of power to be able to help folks, improve messaging, finance, research, or otherwise seal holes in our global vaccine response. Then there is not a whole heck of a lot you can do, but… there is still something pretty big.

 First, you can get the vaccine if it’s available and you are physically able to tolerate it. Regardless of vaccination status, wearing a mask indoors, in groups, and in mass transit helps decrease spread and thus the potential for VOCs. For folks who are still unvaccinated, wearing a mask, maintaining six feet of physical distance, preferring outside interactions, and reducing interaction time, can be helpful.

 If you still want to do more, you can. Talk with your friends and family, make sure everyone who can vaccinate is vaccinated. Chat about how important mask use still is while indoors, in groups, or in mass transit.

 Important note: as vaccination rates rise and cases decline, it’s also essential to consider the positivity percentage of COVID-19 regionally. The lower the number of cases and positivity percentage on a regional dashboard, the safer it can be without interventions for those who are vaccinated; however, it is critical to consider your own personal health circumstances. If there is no dashboard available, then, much like the court case mentioned previously, the best practice would be to wear masks.

We haven’t even talked about Long COVID, the chronic condition resulting from COVID-19. A condition that plagues asymptomatic and severely symptomatic alike, nor its impact on our public health system, but we’ll get there next time, in the next article: When the Economic Flywheel Isn’t Flying.

This series will take as long as needed. 

Read it for as long as you can/would like; I appreciate your ears/eyes and hope to also hear/read your considerations. 

A woman holding a mask with a facemask on it, text above stating "when captors masquerade as allies"

When Captors Masquerade as Allies

As of June, 2021, I will have been eligible to get the COVID-19 vaccine for over four months now as a Solid Organ Transplant Recipient. I am a person who received a liver transplant, younger than the average at the age of 35. My transplant journey is a rough story concerning my life-long battle with Hepatitis C, six treatments, and six plus years in End-Stage-Liver Disease you can read more about the story here.

Because this story isn’t about me, per se, but about the circumstance that I find myself in, along with so many of my peers. Before I explain further all of this, some background is in order as to explain the importance of understand the nuanced differences in vaccine hesitancy and folks who are among the “unvaccinated”.

I belong to part of a large group of vulnerable folks, collectively, spoonies is the best term here. Because the complex mix of auto-immune, genetic, medically induced and viral infection induced immune responses include lots of folks. From folks with certain cancers, folks with HIV, to folks like myself who take medication which suppresses our immune system.

Collectively it’s estimated that we comprise about 4-7% of the United States population, with about 2.7% of the population being transplant recipients like myself.

Many of us who might benefit less from the vaccine, will continue living as if nothing has changed. Masking regularly indoors, outdoors in groups, increasing our hand-washing and keeping some physical distance from others, especially if near crowds, and minimizing interactions.

There are many estimations of when Community Immunity may take hold, somewhere between 70-90% is the average of all the literature and articles I’ve come across. In Brazil, the efforts to induce natural herd immunity, in part by relaxing non-pharmaceutical interventions like mask wearing, resulted in the population of Manaus having as many as 76% of the population infected, and also provided us with the P.1 Brazilian variant now being referred to as the Gamma variant. So to be at the the functional level needs to rely more heavily on vaccine induced immunity, in part because it potentially lasts longer. More importantly it is more robust than natural immunity as more documented cases of reinfection have occurred through natural immunity, especially in regards to Variants of Concern. And it slows the potential for new variants due to significantly reduced levels of viral procreation when vaccinated. (aka less viral load in vaccinated folks means less potential for evolution into new variants, because it doesn’t generally evolve in the wild, just in people/animals.)

As Variants of Concern continue to appear due to the uncontrolled and widespread state the pandemic is currently in, we must consider that these will eventually impact transmissibility of SARS-CoV-2., as both the Alpha variant (AKA UK variant AKA B.1.1.7 variant) and the Beta(AKA South African Variant AKA B.1.351 Variant) have. How this in turn is met with growing vaccine uptake, time is slowly revealing.

For those not familiar, this is the Kaiser Family Foundation Vaccine Montior. An important constant pulse on vaccine uptake and trends here in the United States. Crucially, it has been monitoring the Already got it vs ASAP vs Wait and See vs only if required vs Definitely not.

Within the Spoonie communities some of us may attempt to get the vaccine, anecdotally, many who have reported higher than average instances of side effects, or no effect whatsoever. For others in the Solid Organ Transplant situation concerned about the vaccine check this out, it won’t help you make your decision, but it might help inform it a bit more, especially if you check their references.

Now for the reference to the title of this piece, who are these captors?
The vaccine hesitant for non-medical reasons, and most importantly those who would refuse themselves and their children the safety of a protective vaccine.

For spoonies like myself who long for a return to seeing friends and family, going to a graduation, a wedding, even a funeral, there is little hope in reaching community immunity without the help of those who also fall into haven’t gotten the vaccine category. For veterans of the spoonie community, we’re no strangers to phonies, con-artists, scammers, and conspiracies, especially on the internet, not to mention the people who call them out, and people who accidentally call out real Spoonies. When you achieve a certain level of fame on Instagram, some spoonies find themselves fighting off fake accounts, copies of their own who grift unexpecting folks. We’re used to folks pretending to be disabled standing next to us in line for a Disability Access Pass in Disneyland, or folks who claim medical exemptions for hardships where none exist. And we’re used to the increased scrutiny and disbelief of our condition if not visibly apparent. For some it reinforces imposter syndrome, it encourages them to avoid seeking help, there are layers to these problems which are important to know exist as we explore the reality for folks like me in 2021 in regards to vaccine hesitancy.

The alarmingly high number of 13-15% of folks answering definitely not to the vaccine likely includes a small portion of folks like myself to more extreme cases who absolutely cannot get any COVID-19 Vaccine.  But even without considering that, we can be assured that this % is not consistent state-by-state, and significantly different between rural and urban populations.

We see that among rural populations, the majority of folks who would not be vaccinated number as high as 21% on average. It is impossible to extract from this data where spoonies might fall. Because some of us have already gotten the vaccine, many like myself wait and see, and some already know they cannot take the vaccine, or are so alarmed by side effects they’ll only do so if required, and even then they may quit or be fired.

Let’s assume the upper limit of 28%, a stat where every spoonie cannot vaccinate, with a lower limit of 23%, where only a few spoonies vaccinate successfully against SARS-CoV-2. It means that on average among rural populations the vaccination rate might not breach 72-77%, clearly around or below the 76% which existed in Manaus for their attempt to gain Herd Immunity. Again, Vaccine Induced immunity is likely stronger against SARS-CoV-2 and its VOCs, but at such low rates of vaccination, it poses a significant danger in a different way: Reservoirs. Reservoirs (of infection) are individuals, animals, plants, substance, soil or a location which the virus lives and multiplies. Reservoirs make it hard to eliminate an epidemic, in the U.S. and other countries the prison system does this with Tuberculosis and Hep C. As populations in the prisons have significantly higher incidence of disease than populations outside prisons. Reservoirs don’t’ work well if those folks aren’t intermingling but unfortunately…

Another chart form KFF tells us why, unfortunately, most folks who are won’t vaccinate know one another.

Note the highest groups are among Republicans and Evangelicals, collectively amounting to more than 40% of either not vaccinating or needing for it to be required. It is likely that many of these folks attend the same churches, belong to the same or nearby communities, and will otherwise engage with significantly less regard or no for interventions like mask-wearing, social distancing or extra hand-washing. (46% according to the same KFF Vaccine Monitor) Making it more likely that if they are infected, that they may spread it to others who are also not following interventions.

We’re familiar with this problem it exists in the US in a variety of ways, In 2017, Minnesota’s Measles outbreak was due to a Somali-American community being fooled into opting out of the MMR vaccination. Granted, the vaccination rate among the group was as low as 41% among children, its important to consider that outside of this group the vaccination rate is likely near 95%+ for neighboring communities. If the community intermingles with other anti-vaxx communities they bear the risk of spreading it further, or worse trading it back and forth between groups who are similarly unprotected against the virus.

The reality of new cases going forward is this, in Seattle early June 2021, they found that 97% of cases had occurred in unvaccinated folks. It’s worth mentioning that when vaccinated the likelihood of symptoms and severe COVID-19 is significantly reduced due to it being a protective vaccine, so it is highly unlikely that even if a vaccinated individual came down with symptoms that they might even go the hospital or even be tested without a severe response. In addition more folks with less severe symptoms are less likely to be counted among cases as they’re likely staying home following best guidance.

That being said, it means that unvaccinated folks are where the virus will live, and where it will evolve, and the tight-nit anti-vaxx communities are ripe for being reservoirs.

With this information in mind, lets revisit the title again: When captors masquerade as allies.

The Fault in our Stare Decisis

Anyone paying attention can clearly note that folks who might be vaccine hesitant, by nature, aren’t necessarily allies to Spoonies who live with health conditions limiting their daily lives.

When someone with a health condition needs accommodation to be able to enter, use, or otherwise act in an equitable legal fashion in a public space, or space available to the public, the ADA is often invoked. When someone is employed, and an employer seeks to unfairly punish an employee due to the specific conditions or imposes requirements which make the employee unfit for their role, the ADA can be invoked. If you’re interested in learning how the ADA came about, it’s a ton of activism. The Americans with Disabilities Act is a tool for folks with legitimate disabilities to help the world become a more equitable place. It allows folks who might otherwise be excluded, an opportunity to be included. Additionally, another law often utilized by Spoonies, patients or folks with disabilities, is Health Insurance Portability and Accountability Act or HIPAA. For school children FERPA might also apply, but that’s a whole ‘nother bag of worms. HIPAA protects records from being used against us, by securing them, otherwise it would be likely that employers, insurance, and even hospitals themselves might use this data is other ways. By securing privacy of health information, It prevents stigmatized conditions from discrimination, prevents insurance from specifically coordinating with the employer to charge you more, prevents hospitals from profiting off the data by selling it to pharma/med device/tech companies. You don’t have to disclose your health status, because of a complex interpretation of the constitution by the Supreme Court regarding the right to privacy, but it won’t help getting out of wearing a mask or not being asked about vaccination status. Specifically Griswold v. Connecticut (1965), Eisenstadt v Baird  (1971), Roe v. Wade (1972), and Lawrence v. Texas (2003) are generally the cases which really cement the Right to Privacy.

These two laws, in concert with the Stare Decisis (Court Opinions regarding legal situations involving these laws which expands or modifies their interpretation) of courts in regards to them, create the legal shields which help some folks stay employed, work, live, seek education, or simply interact with the world.

As many who might want to ignore rules for their own personal reasons, might seek to misuse these protections, to shield themselves from responsibility. Over the year+ of this Pandemic, multiple different clearly fake cards have been produced claiming that these two laws would allow the bearer the ability to ignore Public Health protocols being privately enforced by businesses, or publicly enforced for national security, when they most certainly do not.

Obviously, these cards are meaningless as the claims on them. But they bring about the next/current reality, Fake vaccine cards and fake vaccine exemptions.

Airlines are now finding this problem to be incredibly challenging to police since there is no official method of tracking vaccination in a way which could be used as a confirmatory check, in spite of dozens of apps, programs which are all capable of doing so, many of which were field tested during the pandemic by universities.

While they might wield the ADA and HIPAA like a club, they masquerade as folks who need it.
Now, as the vaccination effort approaches a critical juncture, we see this same poisonous-allyship. To avoid personal responsibility, a handful will pretend to be spoonies. But even when they do not masquerade, the reality of their not taking the vaccine means a lower likelihood of community immunity, and they remain captors of folks who have no choice in the matter.

I wish this were the end of the part about anti-vaxx co-opting of the “unvaccinated” category, but sadly TikTok has become a strange place for anti-vaxxers to have a new trend. From the hunger games “I volunteer as tribute” phrase and salute to even using the mocking Jay whistle. This is much like the opposite of those attempting to masquerade as allies, but here instead as unvaccinated spoonies being lumped in with their “solidarity” for being unvaccinated. For Spoonies who have no other alternative to being vaccinated, or for Spoonies like myself where the vaccine is less likely to work, this is beyond insulting. We already advocate for real health problems, we don’t need this weird diversion of focus.

As spoonies we must wait for community immunity or the virus to become a minimal threat and no longer endemic to a region. Both of those are tall orders right now given those who would masquerade as allies are now effectively holding us captive, as for many of us spoonies with immune-issues will continue on as if it were still rampant, for we were the vulnerable population before the vaccine’s availability, now we could end up being even more so.

It’s also imperative we have highest possible vaccination rates for another reason: National Security.
For those uncertain about all of this, national security and disease control go hand in hand. After all, the Spanish Flu (H1N1) killed more people than any battle during World War One.

Unfortunately last month the CDC announcement of their new mask guidelines began a terrible trend. The CDC recommendation ignores evidence of transmission from vaccinated folks being similar to that of asymptomatic cases. Why is that concerning?

Asymptomatic and pre-symptomatic cases have been the dominant method of the last year for transmission. ” transmission from asymptomatic individuals was estimated to account for more than half of all transmission” This predominantly due to our minimizing interactions, use of symptom checkers like thermometers, and mostly because folks who felt ill were told to stay home and given additional sick days to accomplish this. So now, as we move about again, and the majority of folks, functionally become like asymptomatic cases, are less likely to be tested because they are vaccinated, and are less likely to feel unwell, prompting less caution regarding transmission. Public health experts have repeatedly gone out of their way over the past month to explain the necessity of these masks after vaccination, and a recent study highlights these points. And with the data that we’re seeing here, with so many folks not vaccinating, The CDC mask policy only makes unvaccinated folks more vulnerable. So to see that Cal/OSHA, Newsom and the lot of them caved again to “business leaders” AKA Big business is absolutely unconscionable for a number of reasons. And to cave in an odd way, to no longer recommend that workers, even in high-risk jobs, wear a mask is likely due to additional pressure from the recall campaign.

1. Pandemic still raging around the world, importation risks remain high, especially with new VOCs.

2. It’s not even close to eliminated here in the US, and with states like Florida abandoning important info and their COVID-19 dashboard, (despite being the likely source of new VOCs in the US due to their lax testing criteria and outright dangerous vaccine policies for travelers, and the medical tourism for vaccines) transparency is WORSE than in March 2021 when dashboards finally started working.

3. The tests still kinda suck! Due to the windows of false negatives no current test breaches about 60-80% in sensitivity aka false negative rate. The problem is the way the virus does it’s thing compared to the administration of the test on the patient timeline, some more sensitive tests exists, and saliva testing has shown to be more robust in early detection than more typical NP/OP swabs.

4. The CDC mask guidance dropped months earlier than it should have, using them as guidance to make things consistent has nothing to do with health, rather with consistent regulation showcases our Safety 3rd mentality regarding health regulation.

5. When we consider the rates of potential folks who cannot vaccinate alongside the folks who will not, these numbers make community immunity potentially our of reach, especially with continued importation of cases, which can see more clearly with VOCs. All of these decisions seem quite premature.

In situations like this, caution is the better decision, moving slowly, with available data.

Right, Rick, but how does this affect you personally?
I’m a transplant patient, who is planning my vaccination with my doc, it means waiting more than I’d like, it means seeing those around me start to engage in a slowly opening world. It means saying no to networking opportunities, potential career-boosting opportunities, and a great deal of advocacy. It means having limited interactions with friends and family even though the vast majority are vaccinated. Having close family members who are also in the same Spoonie boat, increases our vulnerability. I’ve already spent 6 years in end stage liver disease and the last year damn, I know the fear and potential pain many in the community sense or feel. Unfortunately the vaccine may not even take due to my immunosuppressant meds and in the rare event that my antibodies are detected, it is not recommended as a confirmatory test on immunity.

Thankfully, I live in a community likely to have high levels of vaccination, and have local leaders who understand the interplay between border cities and are donating vaccine supply to San Diego’s other half, Tijuana.

But while SD county only has about 19% of its population unvaccinated currently, neighboring Imperial County has about 32% of its population currently unvaccinated. You san see County by County data here.

charts showing vaccine rates
Red represents conservative leaning counties, San Diego still slightly leans conservative.

These percentage points, combined with the reality of growing interstate travel and vacation use, means as a tourist destination, San Diego is also likely to see more importation cases from neighboring states with less regard for health and safety. So while San Diego folks are more cognizant of their health, tourists might not be.

Okay, well that was awful, is there anything that can be done? Or are we just fucked?

I mean, for those of us in the spoonie community, we know how common the latter is, but in this case there is more that can be done. While states give away money, or Xboxes, cars, or whatever else seems clever, the reality is that folks who aren’t interested aren’t likely to be swayed by a SWOT analysis. They’re likely to be influenced by their peers. Some “Maskueraders” won’t understand so easily and it may take time for them to understand the real risk and adjust their worldview. Patience and tolerance is important.

If we want to be free again in this country, in this world, we must be prepared to protect our community, our nation, and our world, by at the least getting a vaccine for COVID-19. It probably would also help if the federal and state governments could agree on a standard for ensuring vaccination, like having some kind of universal database (it exists with HHS already it’s just not connected to anything outside of a few departments) having at the very least a robust nationwide Electronic Health Record system would help in every health fight, improve mobility within systems, reduce administrative costs, streamline costs/billing and further the goals of health equity in the American population.

As someone who has been fighting to Eliminate a different Epidemic (Viral Hepatitis) It’s imperative that we talk with friends and family about being vaccinated and encourage others around us to be honest and take the vaccine when they can.

In the meantime, please wear a mask when around others in close quarters, or in mass gatherings/mass transit, and if you aren’t yet vaccinated and can get it, please do and encourage friends and family to do the same.

Vaccine rates won’t go down unless we talk to our friends, family and neighbors and make sure everyone who can vaccinate does. The CDC Mask policy makes the pre-emptive reopening potentially worse, and worse for unvaccinated folks who account for nearly all cases in the US. Anti-vax folks pretending to be disabled doesn’t help anyone. Blending the category of unvaccinated conversationally benefits anti-vax movement, as they pretend to be martyrs (who don’t think they’re going to die? it’s confusing) Expanding poor health policy only further erodes what little public health trust exists in institutions.
We can always hope it’ll turn out alright, but as a six time survivor of Hep C treatments, my caution regarding Epidemics is imbedded.

Johansson MA, Quandelacy TM, Kada S, et al. SARS-CoV-2 Transmission From People Without COVID-19 Symptoms. JAMA Netw Open. 2021;4(1):e2035057. doi:10.1001/jamanetworkopen.2020.35057

La Marca, A., Capuzzo, M., Paglia, T., Roli, L., Trenti, T., & Nelson, S. M. (2020). Testing for SARS-CoV-2 (COVID-19): A systematic review and clinical guide to molecular and serological in-vitro diagnostic assays. Reproductive Biomedicine Online, 41(3), 483–499.

Patel MD, Rosenstrom E, Ivy JS, et al. Association of Simulated COVID-19 Vaccination and Nonpharmaceutical Interventions With Infections, Hospitalizations, and Mortality. JAMA Netw Open. 2021;4(6):e2110782. doi:10.1001/jamanetworkopen.2021.10782

The collapsing tunnel of healthcare premiums

It seems insane that something so necessary could increase in price so much over a short period of time, but Healthcare premiums have doubled in most states since 2013.

What’s worse is that for some states; Alabama, Alaska, and Oklahoma, it nearly tripled. The ACA’s three tiered structure was created to eat some of those cost increases and ensure that insurers had access to a larger market. The individual mandate helps keep prices from ballooning faster. And the premium credit gave those with low income, access to the market. The ACA was installed to slow the growth of premiums, and yet it outpaced inflation by more than 95%, this often leaves most consumers wondering…why?

There are a number of reasons for insurance premium increases, one has to do with the way companies responded to the ACA. Many retail employers began spreading out workers, opting for more employees, lowering the amount of workers available to receive full-time benefits, Ironically mostly in government-based hourly jobs. Companies began going for less Cadillac plans and focused on silver packages, which caused a sudden surge in middle package buying, increasing the prices overall. But company reactions were a drop in the bucket compared to the next two components.

An aging market

As boomers grow older, their health demands rise; and while hospital use is up, nursing and doctor shortages can create three to four month long wait times for appointments. Boomers’ reliance on pharmaceutical medication outpaces any other generation. Medicare spending in 2015 was $137.4 billion on prescription drugs in 2015, up from $121.5 billion in 2014. Medicare Part B spent $24.6 billion on prescription drugs in 2015, up from $21.5 billion in 2014. A whopping $7.03  billion was on Hep C meds alone which cured maybe ten thousand people, and with nearly 5 million Americans needing treatment it’s easier to see why premiums are rising. But it’s not just meds they need. Surgeries and outpatient services ranging from colonoscopies to knee replacement are up across the nation as our nation ages.

Pharma Bros:
Valeant Pharmaceutical
s’ Ativan increased by more than 1,264 percent, accounting for $5.3 million in Medicaid drug spending;

Turing Pharmaceutical‘s daraprim increased by 874 percent, accounting for $16 million in Medicaid spending; and

Hydroxycholoroquine sulfate increased by 489 percent.

Each of these increases doesn’t reflect need by the consumer, nor a need for research in development. The price increases are a measure of market control given to exclusivity of production. Investment firms purchase companies with the goal of milking them for investors as they shift focus to their new number one product: their stock. These kinds of moves produce volatility and increase the prices insurers need to set to control for.

As the individual mandate is now set to disappear in 2019,  it raises a serious question, will consumers be able to tolerate Premiums which cost more than their rent/mortgage payments?