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.

WAIT, I THOUGHT THIS ARTICLE WAS GONNA BE ABOUT COVID AND MASKS AND VACCINE IMMUNITY.

 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 Pexels.com

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. 

Rick J Nash in his graduation cap and gown on campus at CSUSM also wearing his MPH stole and hood.

Successful Defenses

In 2014, while almost three years into end stage liver disease and recovering from c.diff (clostridium difficile colitis for those imbibing their daily Latin) it’s transferred via fecal-oral, so when someone doesn’t wash their hands making food, and unfortunately it dries ya out distributing one’s contents most expeditiously through the major available routes.) , I was in a strange space. I knew that the end might be coming soon, and when I was told that if my vitals (my INR was almost okay  but my Bilirubin was stupid high) didn’t improve, I would likely be brought to the liver transplant floor at my other hospital.

I remember not being allowed to leave the room except with another person with me, I remember walking with a friend of mine, who had a heart condition, and together with another spoonie friend with severe lupus we called ourselves “lifers” due to our likelihood of shortened lifespans. I was diagnosed with Hepatitis C at age 12 and told by 30 I would likely need a liver transplant or die. (And he was pretty freakin’ close.)

Hospitalized in 2014

I saw my reflection in the glass in the garden I wasn’t allowed to go into. It was distressing visualizing the reality of my more imminent potential demise.

We spoke of the fear, of the reality ahead, that I would likely wait for weeks in the hospital, in this situation. I wasn’t quite dying just yet, but my liver’s Model for End-stage Liver Disease MELD Score had jumped into the 30s. which meant I was nearly a candidate for liver transplant, and my liver would soon need replacement. There were no guarantees, a person dies every ten minutes waiting on the transplant list in the United States. (btw register to be an organ donor today, save a life or 8 donatelife.net)

I didn’t entirely know what to do, and when my friend left, I started looking for solutions. Being a patient for as long as I had, and having just started writing about my experiences, I felt it important know everything in power about my condition, so that I could better explain the road ahead to others. So that night, I researched, I had found that bilirubin was not only the primary reason for my Simpson’s skin tone I was rockin’, but also my constant itching. And more importantly I’d learned that when babies are born and have high bilirubin or show jaundice, they put them under a UV/Sun lamp, because it helps break down bilirubin.  That had to be it. My INR(clotting factor) and bilirubin(liver stuff) had not budged since they plateaued on day three of my stay.  But I was convinced I had found a solution. I spoke to the nurses, explained I wanted to go for a walk outside the hospital. It took an amount of conversation before they were amenable to my request, but with a CNA, I was allowed to walk around outside. Then later I repeated this, until I was walking outside for about 40 minutes per day during peak times of UV (10am-2pm for the curious), at 11am, and a little before 2pm. My bilirubin began to drop by day 5 in the hospital, and I was released on Day 7. My research had paid off, I was able to better understand the circumstance and ensure my own improvement. Something I could do for others with the hindsight of my experience, but this, helped me decide I wanted to learn how to research better. I wanted my Master’s In Public Health.

For the next two years, every doctor’s, outpatient procedure, hospital visit I had I absorbed everything, every question I could ask, every thing I could learn, and naturally, I would reflect my interest in earning my MPH. It also gave more meaning to my family’s and my exhausting terrible journey, it let me turn a stigmatized  and debilitating disease, into a badge I wore with distinction. In 2016, when NoHep2030 Launched, it only further added to my new goal: Help Eliminate the disease which had nearly killed me and my mother. I found purpose.

2016 was a year filled with so much, from the launch of NoHep, to my advocacy efforts in Sacramento, to one of my best friend’s weddings, and unfortunately, not long after, I became too sick to treat. July 2016, My liver damage was too far gone, without a transplant soon, I would likely die within the year, and certainly by a years’ time. The stress and uncertainty that befell my family and friends were challenging, they would help me see that my resilience was bolstered by their own. I had accepted my likely imminent death, and hoped and persisted in living as best as I could. My mother’s guilt, wore heavy, and words can do little to describe the hollow feeling in my family of the grim reality ahead. But after years of grueling, waiting, in the beginning of December, my family received the best Christmas gift we could have ever wanted. I received a liver transplant.

Liver transplant with my surgeon

After my transplant, I was to be on Disability and Medicare+Medicaid for about two years following the slow recovery. Disability has an amazing program called Ticket-To-Work, it allows the person who uses it to not only cover the cost of their education, but continues to pay the same disability and most importantly delays disability hearing until after graduation (Disability hearings are rarely won, of folks I know who have tried, two of twelve have been able to remain in the program.) This would have allowed me get my MPH, and get a well-paying job after graduation, and rise up out of the under-the-poverty line life of disability.

After my transplant my Hep C came back with a vengeance. It skyrocketed to over a hundred million, (for reference like 10 million is really high) and it would not be long until my new liver was reinfected. The treatment was quickly approved, though off-label, it was the only possible combination which could have solved my unique variant strain of Hep C. I’d suggested a similar combination of meds a year earlier, but had become too sick to treat before one could be attempted.

The treatment is its own story of chaos, denials, appeals, near lawsuits and a go-fund-me page, but ultimately I wouldn’t find out the result of the treatment until September.

GoFundMe for my sixth treatment

During the chaos of my sixth treatment for hepatitis C, I’d also applied for the MPH program at Cal State University San Marcos, I spoke with my colleagues in patient advocacy and friend’s mom who had been a preceptor(people to look at candidates to a program) for SDSU. I was surprised to find out that my application to the program had been rejected. My letters of support were good, my essay was heartwarming and thoughtful, I was at a loss for why.

Being honored at the 2017 Liver Gala as their Liver Champion and 2017 Liver Activist for American Liver Foundation, pic with my awesome docs

Until I remembered something. When I graduated CSUSM in 2009, I had a 2.89 GPA, high enough for the 2.5 GPA threshold of the MPH program. However, after I graduated, I worked for a School District for 39 hours per week. This was pre-ACA, so I had no option for insurance, and with a preexisting condition, losing my insurance meant, I could be denied health insurance and thus treatment, if I did not maintain my health insurance. With an economy in shambles, my only option was to continue going to school after work, halfway through my first semester I began my at the time second treatment for Hep C. It was brutal, and the long hours along with school would discourage my application to many of these classes. The resulting Ds and Fs on my record from this time, were now interfering with my ability to enter grad school. I’d explained the circumstance, and that my grades following my graduation do not reflect my ability as a student, but the necessity of my livelihood in a broken health insurance system. This wasn’t enough.  In order to get into the program, I would need to expunge these bad credits. It would be impossible to hunt down the 10 or so likely adjunct professors from near seven years prior, I needed a better solution. I found one in academic renewal, by taking 30 new credits I could wipe out 30 bad credits and improve my Cumulative GPA.

While I’d lost a step, having been in end-stage liver disease for over five years, and living with hepatic encephalopathy for as long, I’d resolved that my experience at Community college would tell me if I were capable of doing what I’d dreamed of, earning my MPH, writing my book, and helping to eliminate Hep C. Classes took a moment to refamiliarize myself, I was able to cover school thanks to the California promise grant. I aced through community college, taking a few fun courses like Ceramics and genetics, and some more challenging ones like statistics and a social media marketing. But when I’d applied again, my academic renewal had not yet gone through, causing the same rejection from the school, which would postpone my entrance until 2019. Each time I applied I added more recommendation letters, and referenced more of the advocacy work I had been doing during this time (I was working for Help4Hep, writing for Hepmag.com and HepatitisC.net, had started working for UCSD as a patient stakeholder, and was doing a lot of public speaking.)

2019 Patient advocacy pictures

In 2019, a few months into my new job, I was accepted into the MPH program at CSUSM. I was elated, finally, I could take the first step I’d been wanting to take to help join the fight to eliminate Hep C.

So it turns out working full time, and doing an accelerated masters program at the same time, is a quite time-intensive and stressful. Doing this during the pandemic, was even more challenging, let alone when my thesis topic is the pandemic. Between the panic attacks, depression, shoulder dislocations, optical migraines, a bout of cellulitis, my thesis Chair having to go out on medical leave a month before my defense, the process itself is also a story for another time. But regardless of all of these things, healthy pacing and preparedness, and peer support helped me carry on.

On April 28, 2021, I successfully defended my thesis. (I can’t show ya it though, I emgargoed it, so I can publish it.) and on May 22nd, I will begin my renewed birth in life.

But I am most excited to share with the world, the good I can do.

I hope to help change how we see patient advocacy. I hope to empower thousands of folks when I am done.

Just as I did in my life before transplant, as a leader of a grant-based 6 to 6 program, and eventual consultant. I do not aim for the moon, I aim for the community I serve.

Socio-Ecological Model Grounding Exercise

For a brief explainer on what the Socio-Ecological Model Grounding Exercise is, and how it transforms the model for personal use please check out our IGTV on it

We will be running workshops on an irregular basis through the HCVME Community Discord Server The first was at 5PM Pacific on March 19th, the next will be on May 7th! The Fillable PDF and a .Docx alternative are available in the HCVME Community Discord Server.

Another way to download the SEM Grounding Exercise for you in a fillable PDF format which is exclusively for your own personal use and should NOT be SUBMITTED Click here It will ask for an email address to download it, this is for HCVME to be able to see how many times people have downloaded it, and email addresses collected in this way will only be used to send updates when workshops around the SEM GE come about. Make sure to click download in the first PDF reader!

For those unfamiliar with the Socio-ecological model here are some visual examples of variations on the model from different organizations.

https://mchnutritiontrainees.com/2019/04/30/promoting-healthy-weight-colloquium-3-0-a-socio-ecological-perspective-policy-at-all-levels/

This last one is interesting in the way it incorporates culture as an additional layer, from a sociological standpoint that’s largely unnecessary as culture is a component within each layer, so separating it is likely for the particular application’s emphasis on the importance of culture’s impact at each level as well.

Let’s get connected!

Often have I searched the internet wondering, where can I find helpful Hep C resources now that HCV Advocate is gone? Well there’s HepMag, Help4Hep (if you need help with treatment give ’em a call!), IhelpC, and HepatitisC.net, but they’re really good tools for information or story sharing, or delicious liver friendly eats(IHelpC). To help provide a space where we can connect with others who have experienced Hepatitis C Virus (HCV) or those who seek treatment, advice, guidance, or want to do more in the community!

This is the HCVME Community Discord It will prompt you to create a discord account. Due to the public nature of the discord, I have required a registered Discord account. Additionally I’ve set up a channel which features the latest from twitter regarding Viral Hep and Liver disease. featuring advocates like myself, but also liver organizations and medical experts. I’ll be on there posting HCV resource information and what not periodically. and come June, I’ll be on the discord regularly for chats! Please join us! make sure to agree to the rules and pick a role with fits you!

In May we’ll be launching the HepChat Hour on Monday evenings Pacific time 5:00pm-6:00pm on the HCVME Community Discord!

The Federal Government needs to step up to help eliminate Viral Hepatitis.

As a patient advocate, I often find myself taking a yearly trip (or a few) in the spring to speak with lawmakers and their offices. I speak to a number of injustices. I say this because they’re a strange combination of factors from willful defiance of the law to intentional underfunding likely due to in part to stigma and in part because it wasn’t “actionable” until 2013. Actionable, in this case, refers to investing in something that can improve or have a result which is desired. In truth, the only treatment prior to 2013 was still a crapshoot with a 70% cure rate (this rate does not include dropouts). Prior to 2013, there was little reason for an elected official to care about Hepatitis C (HCV), as little could be done. But in 2013, when a new treatment could help the millions suffering from Hepatitis C, instead, states restricted access to the treatments because they were expensive. (In truth if every American with HCV were treated for HCV with those prices, the numbers would run in the trillions, as it was about 88k per treatment and HCV affects between 3-6 million Americans. But due to the structure of healthcare here and the fact that more than 50% of people with HCV in the U.S. are unaware of their status, that could never have actually happened.) But when the prices fell, some states maintained the restrictions, some even expanded them. In 2015, CMS(Centers for Medicare and Medicaid Services) stepped in and issued a memo ensuring that all state Medicaid offices should not have restrictions for HCV meds. Despite both the significant decline in cost of the medications and the mandate of the 2015 CMS reiteration, 11 states continue to use liver damage restrictions, 34 states along with D.C. and P.R. continue to use sobriety restrictions, and 27 states along with D.C. and P.R. continue to use prescriber restrictions on access to Hepatitis C medications. In Texas, a Hepatitis C patient must be permanently injured with cirrhosis before they can access treatment. These restrictions are illegal, yet they persist. If you want to see a great breakdown of just how bad this is.

The State of Hep C with Medicaid Access (courtesy of StateOfHepC.org)

 Something as simple as an additional memo from the White House to CMS, giving them the ability to enforce the coverage and encourage Managed Care Organizations (Insurance organizations but for Medicare/Medicaid) to remove the restrictions might help ensure access to Hep C medications in states like Texas. An uncharacteristic hyper-regulated health access policy stance possibly due to strategic ignorance under the belief that it is more thrifty to deny live-saving medications to their residents. If you live in Texas, Montana, South Dakota, Missouri, Nebraska, Iowa, Indiana, Alabama, or West Virginia, have Hep C and are in need of assistance, please check out Help4Hep, give ’em a call they’re a great group with helpful resources. Otherwise, maybe find your representative and tell them how absurd this is?

 The other matter also involves a certain ignorance; however, this one does not have the willful defiance fueling needless death. Hepatitis C has been chronically underfunded for decades. It currently is funded at 39 million at the federal level. That’s about 12 cents per person for the entire United States. For a condition which affects between 3-6 million Americans, and an additional 1.2-2.2 million with Hepatitis B, it is painfully surprising how little funding has gone into helping patients with viral hepatitis. I recently learned in preparation for a meeting with a house rep, that we lack significant analysis of viral hepatitis as federally, there is only one part-time epidemiologist for all of California’s nearly 40 million residents regarding viral hepatitis.

Virtual Hill Days have temporarily replace typical Hill visits

Right now, NVHRHep B Foundation, Hep B UnitedNASTAD, and others are hoping to expand the budget for viral hepatitis. The CDC has estimated that it would require an annual commitment of at least 316 million dollars to put the United States on the path towards viral Hepatitis Elimination. The current suggestion is to increase the budget to 134 million, less than half of what the CDC estimated is necessary. While personally, it’s disappointing to imagine a world where people disagree with public health priorities, we have positioned ourselves for modest but strategic gains in funding in this decreased ask. Because at 134 million, that’s still less than 50 cents per person in the United States.

This funding would expand one of the most critical elements of Viral hepatitis elimination, screening. In 2020, the CDC finally expanded screening recommendations to all adults and rescreening people who use injection drugs and during each pregnancy. While the latter has been met with some resistance from OBGYN groups, the other recommendations are slowly being implemented across insurance networks. (this is why OBGYN groups are misguided in their approach) This new recommendation is meaningless without expanded testing, especially in communities disproportionately affected by Viral Hepatitis. That testing is naturally limited by the current meager national funding. State and local efforts have a hard time gathering support without grassroots groups due to the silent stigma of Viral Hepatitis. Enhancing funding for screening in Federally Qualified Medical Centers and other community clinics would expand the reach of Hep C diagnosis into the heart of the #MissingMillions and start to help people where they are. But screening is only the door; it’s important that folks and doctors are ready to help guide and link patients with hepatitis c to treatment and ultimately cure/elimination.

2016 I joined with CalHep to help expand linkage-to-care.

In 2016, CalHep, formerly a program for Project Inform, now a part of the San Francisco Aids Foundation, led an effort to have several targeted linkage to care programs for Hep C in California. In total, the program was successfully funded for three years, with two million going into primarily three linkage-to-care or physician-education programs. It was very successful, but ultimately it would not be extended in 2018 due in part to Gov. Brown’s stance on long-term funding. This program’s total cost was roughly 6 million dollars. This is a familiar figure to me, as my bill to insurance total sits at a bit over 6 million dollars for all of my care as a Hep C patient since diagnosis. Efforts like CalHep are scattered throughout the country and have been empowered by local campaigns like End Hep C S.F. and Hep Free NYC. These grassroots groups are the backbone of Viral Hepatitis elimination in the U.S., and are in place ready to be empowered by increased funding. Groups like Hep Free Hawaii, like End Hep C San Diego, work as private-public partnerships with stakeholder groups. Most elimination campaigns are paired with or work with local Harm Reduction groups. This is a natural fit, as there is no way to eliminate hep c without addressing its most common transmission route, intravenous drug use. Harm Reduction groups add to the grassroots power of Hep C elimination. As folks at End Hep S.F. have seen, when people are cured of HCV, they accomplish secondary goals and may have an easier time controlling their substance use; it is an incredible state change being free of viral hepatitis, an otherwise death sentence. Grassroots organizations aren’t just here in the United States, NoHep is worldwide; as a program from the World Health Organization and World Hepatitis Alliance, it serves to connect and share data with micro-elimination movements around the world. This is our time to come together and end viral hepatitis. We have the tools: Vaccines for Hep A and B, and Curative treatments for Hep C; we have the people willing to do the work, now we need support.) 

 You can help. This year, Congress is poised to pass healthcare legislation that can improve the lives of millions of Americans. Allocating $134 million for the CDC Division of Viral Hepatitis and $120 million for the CDC Infectious Diseases Consequences of the Opioid Epidemic Program in Fiscal Year 2022 appropriations budget would bring us one ACTIONABLE step closer to Hep C elimination. In 2016 the USA joined in the WHO NoHep Pledge for global elimination of Viral Hepatitis by 2030, but it’s fallen short so far and taken years to take simple steps like universal screening for Hep C, while Hep B still needs universal screening recommendations from the CDC. This funding step would be the first real investment made by the United States’ federal government towards Viral Hepatitis elimination in the U.S. Let’s end Viral Hepatitis.


Unconvinced? Check out what Frank Hood has to say, he’s the Manager of Hepatitis Advocacy for The AIDS Institute and an all around great guy.

Get Tested, Get Treated, Get Cured.

PS it wouldn’t hurt if we fully got rid of the federal ban on funding Syringe Service Providers, it would provide a helpful destigmatizing avenue for people seeking treatment.

Hep C On a Plane, Expect Delays

We had just wrapped up a three day conference for Help4Hep, and I was wearing a shirt, a shirt I originally wore for a press conference against the BRCA.(The awful replacement for the ACA on the senate floor last year.) A  form fitting black cotton T-shirt that reads: “Hello, My preexisting condition is Hepatitis C.” The shirt’s purpose was to bring to people’s attention two things:  One that Preexisting conditions aren’t really visible, but they are common, and Two, That Hepatitis C is among them, and I have it. Even while being cured of Hep C, in the eyes of the medical world and insurance I will forever be a Hepatitis C patient.

Maybe it was because I was standing alone before we boarded, maybe it’s because I was visible, sitting in the front, but regardless why the next series of events happened, it’s unfortunate that they did.

IMG_20180612_112421.jpg
I wear a mask because I’m immunocompromised due to Liver Transplant

I was seated in the front row, and I was talking with the lady seated next to me about hepatitis C. My shirt was a conversation starter, earlier I’d explained the prevalence and the cure to a few others who’d asked. She was explaining to me that her mother had it and we spoke about the cure, to which she seemed surprised, but often people are unaware of it, so I went into more detail. I explained that there’s a lot of ignorance around the virus, and the cure, largely due to stigma about even talking about.

“Excuse me sir, I’m going to need to talk to you.” The flight attendant interrupted. He and another attendant pulled me off the plane and onto the boarding ramp. he began ” A passenger expressed concern about your shirt, could you explain?” Without thinking I responded I’m a Hepatitis C advocate, I just came from a conference. Noting their faces unchanging waiting for more information I continued. There’s a lot of ignorance about the disease, and a large part of that is due to stigma, so I’m not surprised someone is concerned. They asked if it was an issue.

And I responded, unsure if they meant an issue for me or for them, as the situation implied they took issue. “It’s a blood borne pathogen, it’s blood to blood only,” I continued, still waiting for a response I explained that I was cured last year, but regardless this shirt is my status, and it’s not an issue. I’d had enough of their concerned faces, and turned around and went back to my seat.

I was far too aware of the level of control airlines have over passengers, and now being a transplant patient I only had so much medication with me, so being stuck there was a concern.

Full Story On HepMag

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:
rtx25hgy
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?

New things to come.

I’m going to do something positively terrifying.

Come March 14th not only will I know what’s going on with the Zepatier Treatment

But across all of my online dating profiles I will openly disclose that I have HCV along with pertinent information.

My virtual identities which I once held separate I’m going to link.
I don’t really know what will happen.
I don’t know how people will take it.
But we’ve all got our shit.

In addition to doing the ongoing dating series…

Next month The Five will be available to read in it’s first iteration in six parts. IMG_20160217_171707
It is an introspective look at the previous treatments’ failure and how to fail best.
(like Astronaut Chris Hadfield says “Visual Failings, not Defeat” )

Warehouse Doors and Bitter Pills

What brings us here, to these locked warehouse doors are the restrictions on access from insurers, and medicaid . High cost pharmaceuticals, and the changing of their discount policies. And the lack of effort by governors to approach discounts because of the pending TPP.

I’ve been talking a lot recently about these things and how we get to here.:

The Locked Warehouse Doors. 
Locked_warehouse_door
if you were denied Sovaldi, Harvoni, Viekira Pak, or any other new HCV med, if you had to go through lots of hurdles for treatment; I urge you to tweet/post about them with the hash tag: #LockedWarehouseDoor.

What Happened to My Support Path?
Sovaldi_bottle_My_support_Path
Gilead used to offer My Support Path to larger audience, but they’ve clamped down on the discount in hopes of allowing more patients access to their meds by pressuring insurance companies to loosen restrictions.

Medicaid’s Silenced Epidemic
Silenced
Medicaid’s inability to assist the needs of HCV patients in many states unless they have permanent liver damage and depreciating quality of life. These restrictions are in place even thought preventative treatment would cost half as much.

The Trans-Pacific Partnership
Trans Pacific Partnership
An agreement that could worsen the already steep drug prices we have, and limit the power of insurance companies/Government based Health Insurance like Medicaid to get discounts.

Medical Tourism as Bad Tourist Behavior
medical_tourism
And how Developed Countries are hurting themselves and LDCs(formerly third world) when patients mess with the supply of Live saving inelastic goods.

May is National Hepatitis Awareness Month!

As May is coming up, I wanted to highlight the amazing changes that have happened in the past year when it comes to treatments and the bright future there is for those with Hepatitis C.

Of the daunting challenges to overcome, awareness can help address one of the largest ones.
The fact that the majority of those who have the illness will go unaware until they begin showing symptoms and by then permanent damage can already be done. 

Get Tested today!

TestingforHepC


IMGUR link for the infograph