Liver – A Chronic perspective

Group of friends at the finish line for Liver Life Walk

Hepatitis C You Later 2021

Featured by C Anything But Average, posted in Chronic Illness, Healthcare Economy, Hepatitis C, Liver Disease

HCVME 2021 Review, Each Year, I’m going to add to this story, little by little, to keep you updated on my journey from diagnosis to transplant to treatment, to helping eliminate Hepatitis C.

It was a hot summer day in late July of 1999; Y2 K was the biggest concern on anyone’s mind, but I was 12, my concerns lay in how much pizza I could get from the pizza party coming up that Friday. I was in Tennis camp, and while I wasn’t great at Tennis, I was great at eating pizza. It was still a few days away, and like most 12-year-olds, I’d drink Gatorade and sodas in between the class sessions. But when my dad picked me up that day, I had little clue about how much all of our lives would change from such a small series of events. Upon arriving home, I rushed to the bathroom. The color was unusual, a dark, iced-tea colored urine; alarmed, I called over my dad. Upon his inspection, we decided a visit to the doctor was in order. After that point, the pizza party seemed a lot further away. When my doctor brought my family in, he wasn’t sure what he was looking at; the blood tests were inconclusive, so he explained a biopsy would help find the culprit. I was twelve, and it was 1999; Biopsy was the standard still, and I was more excited that this Saturday I would get to watch more than my allocated 30 minutes of cartoons. They’d decided to biopsy my liver, spleen, and kidney because they weren’t sure where the internal bleeding came from, and my platelets were fine. Although I had no idea this was happening, I was more focused on the McDonalds at the entrance to the hospital and the potential for Chicken Nuggets.

(That’s Me, age 8, and my brother , age 6, clearly being eaten by a shark)

My follow up appointment in September made all the chicken nuggets, pizza parties, and cartoons seem entirely irrelevant. The doctor explained to my family and me that I had Hepatitis C (HCV), which was unusual for a 12-year-old, so they tested the rest of my family. The doctor also explained that because of how the disease progresses, and that I likely had it since birth and that by 30, I would need a liver transplant or die. I am glad that he was serious in his explanation and that he didn’t hold back any information. At that time, there was no cure for Hep C; there was a sliver of hope, though through a life-altering treatment. When my family’s tests came back, we were relieved when my father and brother tested negative for Hep C. But it had confirmed the doctor’s suspicion that my mom was the source, as we had the same strain of HCV. My mom was devastated, I didn’t understand how to feel. I knew that I was 12 and that I was potentially already at the midpoint in my life, so my goals and dreams faded. While there was no cure in 1999, there was treatment with a less than 30% success rate. The treatment required a year of thrice-weekly injections and a series of pills. Non-PEGylated Interferon and Ribavirin, when she took them, my mom began acting almost bipolar in her characteristics. It was hard to understand what she was going through for any of us. But Interferon essentially makes you feel like your worst flu, a dozen times over, and ribavirin can encourage emotional swings, skin issues, and both enhance fatigue. My mom made it through nearly ten months before the treatment failed her. It took years for my family to recover, but there wasn’t much time for that. She found a new job, and I entered High School. My dad had made an agreement with the school to preempt anything they may do: they would pull me out of all sports and any sports teams, and I would be barred from joining. Which meant leaving Tennis, Swimming, Wrestling, and Basketball behind. I didn’t know to talk to others about my Hep C, so I freely explained my circumstances to everyone I knew. I didn’t know that faculty and parents would react so negatively to something which could affect them in no way except their own misunderstandings and fear.

Myself and some childhood friends at a Family Fun Center age 12

I was lucky in a way; 2002 happened to be the year a lot more people learned about Hep C. Mostly through gossip and rumors regarding Pamela Anderson and her former relationship with Tommy Lee. She was infected through a tattoo needle, although her status as a sex symbol meant that kids my age assumed it was a Sexually Transmitted Disease/Infection. By then, I realized I should be more selective with whom I share my status. My mom was ramping up for her second treatment, a PEGylated version of what she’d taken before. This version only required one injection per week but still lasted 48 weeks. This treatment would also ultimately fail her, but we still had hope it might work for me. Once I turned 18, I was given the option to take that same treatment, but I wanted to wait for better timing with school because I’d seen the debilitating state the treatment had left my mom. And as the magnet on my fridge reminded me: When you miss school, you miss out. So I waited until my senior year of college while in a long-distance relationship with an unsupportive fiancé. She wanted me to move out to Florida as she’d done nearly a year before, but my decision to treat while living with my family and having friends nearby turned out the be the best decision I could have made. She was resistant and frustrated with my choice, and it was made because I knew what I would go through; I knew the risks. I also knew that when I graduated, I could lose my health insurance, so it wouldn’t be covered otherwise until I got a full-time job. And even then, it would be a preexisting condition, so it became even more complex, and all of this was lost in our arguments. The stress was unreal, and the treatment I thought I’d prepared for was worse than I could have imagined. For three months, between my hormones pushing me to cry at doorknobs and the daily fatigue having me miss work for the first time, I was in pieces. I walked with a cane because my legs were weak from the injection sites; I used a megaphone to speak to the kids I worked with because my voice would go. I tried my best to stay in a doomed relationship, which my treatment’s failure would ultimately help me realize that maybe we weren’t right for each other. When the treatment failed, I was crushed. I didn’t know what to do; my mom was equally devastated, having hoped that maybe it would work for me, that maybe her pain wasn’t pointless.

With the help of my kids in the program I worked at, of my friends that summer, and my family supporting me, I found renewed purpose. I hit the gym, I reinvented myself, and after a few months of exploring my budding identity, I found some peace. Two years later, my doctor would suggest that I try the treatment again, only with a higher dosage. This was an unnecessary treatment. It was a year before the first Direct Acting Antivirals would come out. He was more interested in pushing the treatment because he was working for the company that made it. I learned of this years later thanks to OpenPayments, a searchable database of payments doctors receive. This was the beginning of my life with cirrhosis. Just as you’d imagine, the treatment was a bit worse than my first, and equally devastating when my viral load stayed at 3 million.(Viral load indicates the viral quantity but not the severity of illness, below 500k, is low, 500k-5mil is high, and above 5 mil very high.) I was a wreck, and my behavior and choices reflected my depreciating attitude about life. But I put myself back into again, hit the gym, reinvented myself again, and started running a before/after school care organization.

My Ribavirin and Incivek pills from 2012

That next year, my mom would go on the single roughest treatment either of us would take. The regimen called for 3 months with the new DAA, and then 6 months additional without it. It was dubbed the triple cocktail, an ironic name as this was for liver disease. Interferon, Ribavirin, and Incivek would ravage my mom’s body requiring multiple units of blood and Procrit to keep her alive.

Ultimately she would find that her hell had paid off and was cured on her third treatment. While the Affordable Care Act had recently been passed, its stance was shaky, and I was worried about my preexisting condition preventing me from accessing insurance. And so, in the two months between when I turned 26 and my new tech support job’s insurance kicking in, I opted to fork over half my paycheck for two months of COBRA.( Consolidated Omnibus Budget Reconciliation Act Insurance can be used when employer health insurance ends for an individual, although it’s quite costly since a person pays both the employee and employer share.) Then I prepared for what I hoped would be my last treatment. I worked out for months prior, ate healthier, and tried to make the only factor that poorly affected my health, the virus. My new friend, at the time, who is now an RN, walked with me through the rough of it. My friends helped me deal with the unusual requirements of the treatment. I was to eat 10 grams of fat with each pill, which is rather hard when one has no appetite. So I’d stuff my face with crumb donettes while taking my pills, or a handful of nuts, depending on which was available. The treatment was twice as hard as anything else I’d taken previously, and it would bring me to the floor in exhaustion. I remember using a good deal of FMLA that year, so much so I’d been missed out on multiple promotion opportunities. Family Medical Leave Act allows for up to 12 weeks of unconsecutive unpaid time off. Three months after I’d started my third treatment, I found myself in a hospital ER asking for a puke bucket. Not a few seconds later, however, missing the bucket altogether, but thankfully the floor would catch most of the nearly two units of blood that projected itself from my mouth like a font. The next few moments were a bit hazy, but needless to say, they gave me an express pass to a bed; I skipped the whole ER line. They began the process to infuse blood and figure out where the internal bleeding was coming from. Had I not recognized the signs from a previous hospitalization, I’d probably have bled out even more en route to the hospital and likely died.

This was the beginning of my symptoms regularly manifesting, as prior to treatment, I’d received a MELD score, indicating the need for a liver transplant. A Model for End-stage Liver Disease score is given to patients awaiting liver transplant to show their imminent need for transplantation; the higher the score, the lower chance of living the next six months and the better chance at receiving a transplant. I was creeping closer to thirty, so my diagnosing doc’s warning was ringing in my ears. This failure was hard to accept, but like the others, I reassessed my life. I decided to leave my new job in tech support and return to working with kids. Unfortunately, over the year, I was building up my strength; my liver disease was making up for the treatments I’d been doing. My legs began to swell and retain fluid, an unusual manifestation of ascites; I’d been diagnosed with every symptom which comes with end-stage liver disease.

Hepatic Encephalopathy was the trickiest one, and one who helped get me relieved of the field I’d just reentered. Without daily lactulose, I could get trapped in mental circles mirroring dementia. My inability to do basic math proved challenging, but by using an excel spreadsheet, I felt I could compensate. My new job, however, came with new problems. The problem wasn’t my health; the problem was that I wasn’t who she wanted to hire, so they told me I was the best candidate they’d seen and was welcome to reapply; however, this position was determined to not be a right fit. The entire time I was working, she’d used my health as an excuse to push me out, encouraging me to take sick days during my evaluation period, planning meetings on days where I had appointments, knowing all of this would hurt my chances to become a permanent employee. After being let go, I was beside myself. This was the field I’d learned so well that they would ask me to come back as a consultant to help improve floundering sites. It was December of 2013, and I realized that my trajectory would have me disabled in no time. So we began the paperwork, and then, seemingly out of nowhere, something extraordinary happened.

A new treatment came out, one with a 90%+ efficacy, Sovaldi. For the first time in my life, I had real hope. I pumped up my advocacy efforts and began writing for HepMag at the invitation of Lucinda Porter after she’d read my heart-wrenching story submission and subsequently my blog I’d started during my third treatment. The treatment had to be off-label and combined with another DAA called Olysio; the combo was the first treatment to bring me to a zero viral load. And not only that, it had almost no side effects; it was life-changing. My family and friends were excited for me, but this isn’t it. This isn’t the good part. It’s not even close. It was a high moment, where my family and friends enjoyed a month and a half of knowing I would live beyond thirty and maybe have a more typical life after I hit SVR12. These treatments all have a waiting period for when one can be cured. Because it takes time to know if the treatment has been effective. That date is called Sustained Viral Response at 12 weeks or SVR12. I never hit SVR12; in fact, not six weeks later, I was hospitalized for Clostridium difficile colitis (C.Diff.) The infection I’d acquired at a diner gave my remaining Hep C the chance it needed, my jaundice was so bad, my eyes were golden yellow, and I was bumped up on the transplant list. I spent the week at the hospital, wondering when and how I would leave. The idea of a transplant scared the hell out of me even though I knew it would ultimately save my life.

Two days in, they explained that my Hep C had returned. I wasn’t allowed to leave my room alone, but thankfully I had lots of friends and family come to visit. Even an old co-worker I hadn’t seen in almost two years heard about it and stopped by. Also, coming into the hospital with C.Diff is awful, but as I was spending a week there, at least I got my own room. I also wanted to confuse the CNAs, so I had everyone bring in stuffed animals and “congrats on your baby” things because humor is excellent medicine. Upon discharge, I was informed of a new treatment and was slotted to take it by the end of the next month in November. It had a higher success rate than my previous treatment at 98%; Harvoni also required 24 weeks due to the extent of damage done to my liver. But it was just as successful as the prior treatment; by six weeks, I’d hit zero, and I’d maintained it up until May. Then, as we prepped for the annual Liver Life Walk, I received the news that my last week on treatment, the virus had rebounded, and treatment failed again.

The walk was challenging, and my body started to have trouble dealing with the symptoms, even with the medication. The cascading failures put me into a deep depression, and my girlfriend-at-the-time felt equally depressed. Months afterward, our state degraded to an untenable point; the breakup, though, was fuel for change. Sometimes it takes a kick in the head to see a different perspective, to push someone out of a funk. I redoubled my efforts, crafted a routine to help me maintain my strength and fortitude, and told all of my friends to help watch for my HE symptoms, to tell me when I should take lactulose to help ease it. I jumped back into life and began searching to find out exactly why the treatments failed and see if any treatments could match my specific situation. I found the particular mutations and why my treatments didn’t work, so I proposed a combination of two treatments, combining Zepatier with Harvoni. My doc took it under advisement, but before anything could happen, my liver hit the point of no return. As my transplant doc described it best, my liver was an old shoe, and it needed to be replaced before I could go on another treatment. My three-year wait for a transplant had, so far, gone without a call for a full, healthy liver, so I knew it would be a challenge going forward. To keep my mental faculties and physical state intact, I followed a friend to dance class. There I found the perfect outlet to work around the temporary memory loss caused by HE by introducing muscle memory to my memory castle techniques for memorization. Dance was at my own pace. I kept a bag of intentionally chosen mixed nuts (the combo helped balance my electrolytes, which would constantly be a wreck because my body would purge the retaining fluid or expelling fluid from diuretics.) Dance gave me a lot of my world back, but as my jaundice became impossible to hide, sunglasses at night were harder to pull off. I started working with a newly formed coalition of nonprofits called CalHep and helped them pass a pilot program by speaking with the assembly subcommittee. I was committed to ensuring that no one else should go through the hell of end stage liver disease because it was unnecessary if they can get treatment. At that time, there were restrictions on access, so that you needed to be F3, which is when permanent liver damage begins, to start treatment. F3 is the third tier in the liver disease fibrosis scale; F4 is usually when MELD begins. While the F3 requirement is no longer the case in California, other states like Texas (at the time of this article’s writing, Dec. 2020) still have these heinous restrictions. As an advocate, I dedicated myself to helping in the fight to the best of my ability. But in September, I began a series of monthly hospital visits, which could eventually lead to my death or maybe a transplant, and everyone around me knew it. It was the most intense period in my life, and it also happened to be October of 2016.

So everything was becoming politically charged, and tribalism was making the fight for healthcare even harder. In September of 2016, I moved along with my friends from the apartments we’d lived in for three years into a four bedroom house. It was nice, and I’m thankful that my friends were able to do this with me, especially in the condition I was in. But in my shape, setting up for the move was hard, and during the process, I passed out while explaining, “no, I just need a double-double from In N Out.” What I didn’t realize is that the craving came from a complete lack of sodium in my body. In addition to that, I happened to be Hypocalcaemic, so when I arrived at the hospital, they quickly assessed the situation and were more surprised that I wasn’t in a coma, based on how low my sodium was. I spent the week in the hospital recovering while my friends packed up my remaining things and moved me into the house. When I got home, I started to organize my things and pack for a trip. My mom had decided that we should take a cruise ship to Mexico, so she invited me and even paid for a friend to come along. I understood why she was doing this, she wanted to have some good last memories if things should come to that, and she wanted me to have some enjoyment in this rather literal hell. But that’s not in keeping with the buzzard’s luck I seem to have.

The trip was made more challenging by an odd bit of advice. Counter to literally every other doctor I’ve had, the attending doctor, during my last trip to the hospital, told me that to beat Hepatic Encephalopathy, I should really be consuming less protein and more salt. (just so we don’t spread this around, that’s TERRIBLE ADVICE, it’s the exact opposite of what should be done, low salt, high protein is correct.) But the thing is, when you have HE, memory is a tricky and confusing thing, so I followed his advice for a few weeks, including this trip. Needless to say, I looked straight up pregnant, my ascites were such that my stomach actually started to hurt on its own, and I spent most of the trip vomiting and walking in circles to avoid leg cramps because I didn’t pack my mixed nuts combo. When we returned from the trip, I found myself in so much pain, I couldn’t bend down to put on socks. The trip to the hospital had become so routine, I prepped my doc en route and told her what was going on. She confirmed what I’d suspected, I’d need a peritoneal tap. A peritoneal tap is typically a needle in the abdomen which drains excess fluid. Thankfully they were ready for my arrival, and they rushed me into triage and started work right there and were concerned. The reason for the concern was that peritoneal fluid can become septic if left for too long. And the pain was indicative of just that: sepsis. My heart rate was such that the only pain med I could take was Ketamine. As they drained twelve pounds of fluid from me and placed an Internal Jugular port in my neck to administer antibiotics in an attempt to knock out the sepsis. I was lucky that within 18 hours, the antibiotics were working, and I could slowly get better. This event had also raised my MELD from 26 to 35. I remember sharing my journey with every doctor who came in, explaining that should I live, I would get an Master’s in Public Health so that I might do more for my community. I shared my journey for two reasons, to remind myself of my purpose and to curb stigma. My higher MELD meant it was more likely that I could get a transplant, but I would wait and be denied not one but three potential transplants while the election day would frustrate my television set in the background.

Going home with a PICC line in, I didn’t know how long I’d have left; I felt better, but I knew it was relative. A Peripherally inserted central catheter line is a soft tube that goes in the left arm, allowing drugs to be more easily administered to the heart. I’d accepted and come to terms with my death should it come to that. I dug hard into my routine and got back to focusing on surviving, and waiting. I had had over eight viable liver offers at this point, and each time, renewed life was given to another person higher on the list than I. When you get to where I had, being called in for a liver offer is a regular occurrence, actually being the recipient however, is quite rare. The reason this happens is to make sure the liver goes to the person of most need where the liver and recipient will have the highest chance of survivability, they prep the top few contenders for transplant for every newly available liver.

About three weeks later, on December third, 2016, I received the call for my transplant. That day is one of the most vivid blurs because only shortly after I arrived and cleaned up, I was prepped for transplant and put under. Five hours later, I was out. Everything had gone right, and within two days, I was farting! Okay, yeah, I get it, it doesn’t sound impressive, but it’s the first step in knowing that everything is hooked up and working correctly.

Me with my Liver Transplant Surgeon, and my resulting scar

Within three days, I was out of the hospital and kinda walking, I had to do a rollout method to get out of bed, because well, my abs were cut in half, but one adjusts. I was back on the elliptical within the week and ready to get back into life. My friends and family all wanted to visit, but everyone had to wear masks and gloves because of my fragile immune state, and no one who was sick could come over. Once ready, I returned home and prepped for the next step in my recovery: treatment, again. Because if this treatment didn’t work, the virus would infect my new liver, and I would be reliving the last three years of my life as my new liver slowly failed. But thankfully, my doc expanded on what I’d suggested a year earlier, prescribing me twelve weeks of Zepatier, Sovaldi, and Ribavirin. An off-label treatment was designed to target my specific variant strain of HCV. It was approved by insurance (every previous medication had been denied and required multiple appeals to push through, but this one was on Medicare.)

The Trio of meds which was my sixth treatment for HCV

It, too, had its bumps as insurance goes, as I didn’t zero out until eight weeks. My team was concerned I might not reach SVR24 because four weeks isn’t a lot of time to stay a zero viral load while on treatment when you have the history I do. After weeks of stressing, calling lawyers’ offices, and preparing for a large lawsuit should it need be done, I was relieved to get to SVR12, I wasn’t quite cured, but it was a good sign. Then, 18 years after my initial diagnosis, I was cured of HCV; in early September of 2017, I reached SVR24.

The American Liver Foundation event, I was their Liver Champion in 2017

Advocating for End The Epidemics in 2019

In 2017 I was already writing for HepatitisC.net, working with CalHep, the American Liver Foundation, and HepMag.com, but I needed to do more. In 2018 I started working with Help4Hep as a Peer Counselor; I stepped up at HepatitisC.net as a moderator. I stepped up my volunteering, speaking with ALF and Lifesharing, doing TV interviews to promote organ donation. Assisting CalHep in attempting to expand the pilot program I’d helped promote in 2016, and at the close of 2018, I was offered to be the Chair of the Consumer Committee at Eliminate Hep C San Diego. In 2019, I advocated with End The Epidemics and helped secure funding for HCV, HIV, and STD programs in California; I also started with a brand new nonprofit. Having been a patient advocate and a part of NoHep 2030 since it started, I knew that the goal is near impossible given our current prescription drug and healthcare system. This is why I started working for this new nonprofit, Open Biopharma Research and Training Institute. I realize that the prescription drug marketplace has many holes that increase prices, and one of those holes is manufacturing training, as there are drug shortages and lost development costs. So in an attempt to help smooth that process, I jumped at the chance to join Open Biopharma as the Director of Education and Outreach.

The San Diego ALF Liver Life Walk in 2019

Leading a Tour on our Soft Opening December of 2019

While preparing for the nonprofit’s launch, I finally began my Master’s in Public Health program on my third attempted application. I dove right in, researching and doing my first literature review on young people with Hep C. That Literature Review helped me craft an article that informed and encouraged others to comment on the new CDC recommendations for Hepatitis C testing. Every aspect of the new recommendations was adopted, and additional guidance reflected the research recommendations in my article. Additionally, End Hep C SD was officially kicked off in a unanimous vote by the San Diego County. It was terrific seeing advocacy work pay off, but by thesis working with HCV was muted by the arrival of COVID19. The project I’d intended on working with could no longer happen, so I dove into research on COVID19 and have since begun a systematic literature review as I am now in my final semester of my Masters’ In Public Health Program. Over the summer, I helped design health promotional material explaining the different SARS-CoV-2 antibody tests. Splitting my advocacy focus between COVID19 and Hepatitis C has been necessary. Those who are newly infected with COVID19, and COVID Long haulers, are not alone in their plight, and those of us in the HCV and HIV/AIDS communities who understand their fight have stepped up as well, like with COVIDhealth.com. We’ve already shown that when we fight to end multiple epidemics, we can sync up those fights. I look forward to graduating with my MPH in 2021 and publishing my journey with help from friends and family as a book in 2022.

San Diego County Unanimously moving forward with Eliminate Hep C San Diego in March 2020

2021 was a year with much promise, although January brought new challenges I’d in no way considered. While I’d extended a semester to have better time for my literature review on COVID-19 for my MPH, a new diagnosis of an auto-immune disease in my family established what we’d suspected the past few months. In the future, I’ll talk more about this, but it’s not my story to tell, although I am part of it, time will reveal all things.

In February of 2021 I was able to join the NVHR to educate and encourage the federal government to properly expand the budget for viral hepatitis to a reasonable level. (because currently it’s underfunded to an exceptionally poor degree, and at its current funding level is not capable of meeting the goal of NoHep2030.) Our hill visit also sought to improve funding for efforts regarding the opioid crisis, neither received the budget appropriate to the scale of the problem. It was an exceptional failure of vision of our congress and executive during the most significant perpetual reminder of the importance of control, surveillance and mitigation of deadly viral infections in decades. Although the experience of so many virtual hill visits was exciting and compelling, it would have been nicer if the asks were considered. In March I created an art series called the Patient Emotional Word Art Series, it ran for a little over a Month, ending before May to usher in Hepatitis Testing Month. I also launched and started guiding folks through the Socio-Ecological Model Grounding Exercise.

I’d also spent the bulk of my time preparing my defense, while my initial thesis Chair had was out sick, and I was not informed for a month, which added to the stress, I’d managed to successfully defend and Graduate in May 2021. Graduating was an amazing experience, although it still feels unreal, as I actually walk in May 2022, as I was unable to vaccinate until July 2021. I had to observe the data to see how the vaccine worked for folks with solid organ transplant like myself, and I wanted to meet with my doc before getting the Jab. I wrote a bit about my experience during this time.

Me on Campus at CSUSM in my MPH grad gear

Over the next few months I’d use the SEMGE alongside a built lecture and speaker series to create the Patient Advocacy Module. An teaching module of an overview of patient advocacy, all its components, designed for folks in Cell and Gene Therapy. The module was rolled into our CIRM training as it fit perfectly with the goals of CIRM. I plan on expanding the module into a week long course by next year, and some day, a full semester class. In 2022, this year I’ll also be building the foundation for the book on my journey, It will be interesting.

Each year I plan on updating my story to share as the journey continues. If anything, I hope my story inspires you to help someone close to you who has Hep C, who you may not have understood the potential for their plight, or to help yourself remind you that you have so much more potential than you know. We are all worthy of treatment, care, and love. The more we share our stories, the more we can help erase stigma.

TLDR; When it comes to Hep C: Get Tested, Get Treated, Get Cured.

When Captors Masquerade as Allies

June 15, 2021June 23, 2021 by C Anything But Average, posted in Chronic Illness, COVID-19, Economy, Education, Health, Healthcare, Healthcare Economy, insurance, Liver Disease, Prescription Drugs

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.

TLDR:
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. https://doi.org/10.1016/j.rbmo.2020.06.001

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

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

Successful Defenses

Featured by C Anything But Average, posted in Chronic Illness, Education, Healthcare, Hepatitis C, Liver Disease

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.)

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.

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.

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.)

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 22^nd, 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.

Hepatitis C You Later 2020

Featured by C Anything But Average, posted in Uncategorized

HCVME 2020 Review, Each Year, I’m going to add to this story, little by little, to keep you updated on my journey from diagnosis to transplant to treatment, to helping eliminate Hepatitis C.

It was a hot summer day in late July of 1999; Y2 K was the biggest concern on anyone’s mind, but I was 12, my concerns lay in how much pizza I could get from the pizza party coming up that Friday. I was in Tennis camp, and while I wasn’t great at Tennis, I was great at eating pizza. It was still a few days away, and like most 12-year-olds, I’d drink Gatorade and sodas in between the class sessions. But when my dad picked me up that day, I had little clue about how much all of our lives would change from such a small series of events. Upon arriving home, I rushed to the bathroom. The color was unusual, a dark, iced-tea colored urine; alarmed, I called over my dad. Upon his inspection, we decided a visit to the doctor was in order. After that point, the pizza party seemed a lot further away. When my doctor brought my family in, he wasn’t sure what he was looking at; the blood tests were inconclusive, so he explained a biopsy would help find the culprit. I was twelve, and it was 1999; Biopsy was the standard still, and I was more excited that this Saturday I would get to watch more than my allocated 30 minutes of cartoons. They’d decided to biopsy my liver, spleen, and kidney because they weren’t sure where the internal bleeding came from, and my platelets were fine. Although I had no idea this was happening, I was more focused on the McDonalds at the entrance to the hospital and the potential for Chicken Nuggets.

TLDR; When it comes to Hep C: Get Tested, Get Treated, Get Cured.

Hep C On a Plane, Expect Delays

June 13, 2018December 31, 2019 by C Anything But Average, posted in Health, Healthcare, Hepatitis C, Liver Disease

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.

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

January 25, 2018January 25, 2018 by C Anything But Average, posted in Economy, Healthcare, Hepatitis C, insurance, Prescription Drugs

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 Pharmaceuticals’ 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?

It Takes Two

February 25, 2015 by C Anything But Average, posted in Health, Hepatitis C, Liver Disease, Prescription Drugs

While missing a dose Harvoni had no ill side effects, I can’t say the same for accidentally doubling up. Last weekend I did just that, the side effects were quick and unpleasant. I was unsure as to whether or not I had taken my pill, and while I know that “if unsure if you’ve taken your RX, don’t” is the general rule, I was mostly certain I hadn’t taken it. So an hour following the first pill, I took my second. I didn’t notice how thirsty I was until the pain began two hours in. I’m prepared for hepatic encephalopathy, ascities, jaundice, fatigue, etc… but what I can find few solutions for is the arthritic mimicry. Joint pain from time to time is one thing, but this infects every subtle movement jarringly pushing me to a slightly less uncomfortable position.

I do not have Rheumatoid Arthritis. However, from time to time I notice the symptoms of HCV mimicking it. It’s more than just standard joint pain, and my heart goes out to those who find themselves suffer from both.

It’s not uncommon for the symptoms to express without other signs of HCV infection. I am lucky in the sense that i find myself with many of it’s symptoms, because without such challenges i may not have known of my affliction as early as i did.

Every joint in my body ached, it hurt to open a door handle. I hadn’t felt this kind of exhaustion and pain in some time. I had one solution in front of me, to wait and see. And so I slept the majority of the next few days. Drinking as much water as I could in hopes to combat my skin’s growing inelasticity. As the days passed, the extra pill’s effects began wearing off.
The RA mimicry that popped up has yet to fully fade, but at this point it’s just the state of my liver.
Nothing happened last week, which in a sense made it an exciting week.
Not because the extra pill had less ill effect than I had anticipated, but rather because of a phone call.
The week prior I had my blood drawn. I had hope that my numbers would show progress. The last few tests had shown overall that my liver function was improving, my numbers were returning to a normal state. And by normal, I mean like everybody else normal. I was constantly surprised at how well my liver function tests were going.

So now we’re here. Rather, we’re back here.

Six months ago. I was able to zero out for the first time, however when the second draw came, there was a discrepancy between the tests. Within a month of finishing my 12 week Sovaldi Olysio treatment I found myself with rapidly elevating bilirubin. Which was only further complicated by a C. Diff infection from some diner food I’d eaten for lunch. A week’s long stay and a potential transfer to the hospital for transplant were real possibilities.

I say this with an uneasy stomach spinning from caution, hope, fear, and unbridled glee.

My viral load is undetectable.

It’s unclear as to exactly when it happened, but it has been the case for at least a week. And with about 10 more weeks to go, things are looking well.
I will have several more tests, one at treatment’s end, another a month following, and yet another in August when I will hopefully reach SVR12.

It takes two. End treatment and SVR 12, Two more tests will show me that I have done, what has taken me ten years, to do. I began my first tests for treatment when I was nineteen, and just this month I turned twenty nine.

So far, nothing has been the best birthday gift I’ve received.

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