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.
For those unfamiliar with the Socio-ecological model here are some visual examples of variations on the model from different organizations.
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.
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!
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.
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.
Right now, NVHR, Hep B Foundation, Hep B United, NASTAD, 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.
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.
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.
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.
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.
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.
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.)
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.
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.
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.
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.
SB 859 would create a master plan requiring state agencies to set targets to end outbreaks of HIV, Hepatitis C, and other STDs
SACRAMENTO – Senator Scott Wiener (D- San Francisco) introduced a bill today that would require state agencies to establish and implement a master plan to end new infections of human immunodeficiency virus (HIV), hepatitis C virus (HCV), and other sexually transmitted diseases (STDs). The diseases disproportionately impact gay and bisexual men, African American men, and young people ages 15-24. Though many effective preventative and treatment tools exist today, these epidemics still persist. In a society where we have the ability to treat and prevent against new infections, it is unacceptable that the rates of infection have barely slowed, and have increased in communities of color.
From 2013-2017, new HIV diagnoses decreased 2% in the African American community and increased by 4% in the Latinx community, while declining nearly 13% among white people. And, comparatively, in New York, since the implementation of a master plan to end new HIV infections in 2014, diagnoses are down 40%. California’s preventative work is falling dramatically behind other states, and it is time to take a more thorough approach to ending these epidemics.
Senate Bill 859 would require the Secretary of California Health and Human Services (HHS), in coordination with the Chief of the Office of AIDS (OA), to create a comprehensive Master Plan to end new infections of HIV, HCV and other STDs. This bill mandates that the Secretary and Chief institute a Stakeholder Advisory Committee and work with relevant state agencies to set targets to end new infections and identify recommended programs, policies, strategies, and funding for achieving these targets.
Senator Wiener, the bill’s author and longtime LGBTQ rights activist who was the first elected official in the United States to openly discuss his use of PrEP, a preventative HIV treatment, said the following:
“We have the tools to end new infections of HIV and STDs. What we’re missing is political will. This bill, SB 859, would require California to make a plan to end this epidemic, and help state agencies access the necessary resources to do so. I’m proud to be introducing another piece of legislation fighting for the LGBT community, which, alongside other marginalized communities, is disproportionately impacted by HIV and other STDs. California must be a leader on these issues, and right now we’re at risk of falling behind. SB 859 would a big step towards finally ending the epidemic.”
“We have come so far in how we can diagnose, treat, and in some cases cure these diseases. They no longer have to be epidemics,” said Assemblymember Todd Gloria (D-San Diego), principal co-author of the legislation. “It’s time for California to lead and demonstrate that ending the HIV, HCV, and STD epidemics is possible. Creating a master plan to bring focus and collaboration to end these diseases is in the best interest of public health, taxpayers, and our future generations.”
“Creating a Master Plan on HIV, HCV, and STDs will address widening disparities among vulnerable populations and build upon the successes of the last 30 years,” said Assemblymember David Chiu (D-San Francisco). “I am proud to join Senator Wiener’s effort to bring California’s efforts to end these epidemics in line with other states.”
“STD rates in California have reached record highs and HIV and hepatitis C continue to impact the state’s most vulnerable and underserved communities,” said Craig E. Thompson, CEO of APLA Health. “We applaud Senator Wiener for leading this bold effort to bring together state agencies and community members to develop an aggressive strategy to end these epidemics. Now we need the full support of the Governor and the Legislature. The longer they wait, the more it will cost California to treat new infections that could – and should – have been prevented in the first place.”
“California can no longer respond to its HIV, HCV, and STD epidemics as if they are distinct public health crises. These epidemics stem from the same root causes: lack of access to health care and prevention services, stigma and institutional bias, and an insufficient, fragmented response from our public health system,” said Joe Hollendoner, CEO of San Francisco AIDS Foundation. “We are thankful to Senator Wiener for his leadership in calling for a statewide masterplan to end the epidemics and look forward to working together toward a future of health justice for all Californians.”
“Collaborative and concrete action to address skyrocketing STD rates is long overdue,” said Julie Rabinovitz, President and CEO of Essential Access Health. “A public health crisis of this magnitude requires a comprehensive statewide strategy to strengthen our public health infrastructure, increase public awareness about the importance of STD prevention, and expand access to STD testing and treatment for all Californians. We thank Senator Wiener for his leadership in calling for the development of a coordinated state work plan to end the HIV, Hep C, and STD epidemics in our state, and look forward to advancing this important measure this session.”
“San Francisco has long been a global leader in working to end new HIV infections, and just last year new HIV infections dropped below 200 for the first time ever,” said San Francisco Mayor London N. Breed. “We are, however, facing some of the same challenges that we see statewide, including reaching our Black and Latino populations and reducing new infections for people who are experiencing homelessness. We need the State to develop a comprehensive plan that will help our City, our region, and our State end the epidemic once and for all, and I thank Senator Wiener for his leadership on this important issue.”
SB 859 is sponsored by the SF AIDS Foundation and APLA Health and co-sponsored by Essential Access Health. Assemblymembers Todd Gloria and David Chiu are principal co-authors. Additionally, Senator Melissa Hurtado (D- Fresno) and Assemblymember Rob Bonta (D-Oakland) and are co-authors of the bill.
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.
It is an introspective look at the previous treatments’ failure and how to fail best.
(like Astronaut Chris Hadfield says “Visual Failings, not Defeat” )
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.
It’s easy to understand why this can be a terrible idea, but considering 1 in 20 Google searches are medical related it’s not hard to understand why it was done.
For those of you not hip web-lingo, it’s a scraper. Scrapers copy content and aggregate data onto one platform, typically a website, however recently apps have become fantastic at using scrapers.
Let’s look at the 4/12/15 Google high-quality image medical data for Hep C.
I can see a glaring issue without having to go much further. Under contagious its top listing says that it’s Mainly spread by sexual contact.
The main methods of transmission are in order: Intravenous Drug Use, Transfusion (in the USA prior to 1992, in Canada prior to 1990), and needle stick/Health care worker exposure.
This is the principle problem with scrapers. Even it grabs the data properly, Sexual intercourse using has the longest section when describing the transmission methods…why?
Because there is a lot of controversy around it. The most recent poll was done by the CDC in 2010, and the questions that were asked, were fairly direct. Even in other polls that have come out through the years, this issue always comes up: The biggest section of the Hep C population consists of Intravenous, mostly illegal, drug users. It’s far less damning for someone to claim to have received it sexually than via drug use.
When studies have polled HCV patients directly, usually through a doctor, they find slightly better information, which is why we have such an interesting spread of information. They also have been examining the virus, to see how likely these claims could be. E.G. looking at the life of the virus outside the body, looking at how the HCV RNA in sperm is typically inert or non-existent. (it’s around 9% of the HCV infected male population that have it, and less than 20% of that 9% excrete enough for it to potentially be transferred) The less likely means of transmission as in order: Vertical Transfer: Mother to Child (it does not go father to child), Personal items (nail clippers, razors, etc..), Sexually can even further be broken down: Rough unprotected anal intercourse, rough unprotected vaginal intercourse, unprotected intercourse/rough intercourse. It is not simply by means of sexual contact, which is a much larger category.
Okay Google, now…let’s talk about how we correct this problem. There is a feedback button at the bottom for correcting mistakes.
But this is also terrible, because most of the time people who Google ailments and diseases are usually anything but experts. So the idea that an under/uninformed user is going to be able to use that feature is silly, at best. In fact, many who use this method, may reinforce what Google says by repeating their new-found knowledge to others who are under/uninformed.
The feedback method is used a lot by Wikipedia. And the correction method works for Wikipedia because often times authors/experts will correct the information using verifiable credentials. But even still, Wikipedia’s accuracy is at the mercy of its users.
The other issue with this new presentation of information is the listing of sources. Google is borrowing the credibility of the top websites in its scraper. The Sources listing as “Mayo Clinic and others” uses a recognizable name to help a user view this information as accurate. Additionally there is no list, of what these sources area.
Ethically it should list sources, as “Sources” and not disclose any of them until the user checks the sources themselves.
While yes Google consulted with the Mayo Clinic, clearly not for that medical data, which is what makes this tool so useful. Not only would it allow Google a better idea as to how many of their users trust this quick medical information, but it would also allow Google to randomize the presentation of sources to encourage users to verify the medical information.
Why? Because if you see Mayo Clinic, 9GAG, WebMD and Top Ten medical facts about DISEASE YOU GOOGLED listed as sources, chances are you’ll look at the info with more scrutiny. Since then, Google has changed the main transmission method to “Spreads Easily.” Which, as a blood-born pathogen is far from the truth. Please Google Hep C, and help correct it. Also if you’re a medical professional, please help correct the information you know to be false. And please ask your Doc/Specialist(s) to help correct false information as well.
While there is a lot of medical information on the web at your fingertips, always tread with caution. Incorrect information, or half-cocked information should never be used for diagnosis. The internet can provide you with the questions you need to ask, the help of communities, and other resources to get help.
Misinformation for medical information is potentially deadly, and after all the internet is mostly a series of tubes.
But as for the ACA/Obamacare… Let’s talk Healthcare Insurance.
Healthcare basics: Healthcare as an employee (which is the most common way about it in the united states).
Insurance and compensation are part of the bargaining agreement between you and your employer when you start working for them.
Insurance is a weird thing, but ultimately the employer is giving you a discounted insurance plan in lieu of other financial compensation. There are some companies that will pay you to opt out of their insurance, because it’s cheaper for them as long as they meet their units needed for group discount.
So when you get handed a dozen options from your HR department come fall, I’m sure you’ve noticed a few plans are ridiculously expensive. In some circumstances companies have executive plans which cover more than the options you were given.
Your pay-grade usually determines the allowance you get to buy a healthcare plan. It would be prudent to know that the ACA is the first real legislation to present a progressive tax system that extends to this compensation.
Why should you give two shits about all of this? Understanding benefits negotiations is as essential as negotiating your wages. Since it’s such an information disparity, most potential employees do not know what they’re going to get until they’re hired. It’s always good to know what insurance plans are offered by a company and how they compare to other options.
It’s also often the case that you may find that your doctor is no longer covered when you switch employers, even if it looks like the same plan. That’s because Healthcare plans usually have a list of doctors within their program. There are some medical groups that have associated healthcare insurance to alleviate this issue, and in a sense compete over your care without your say.
The necessity of Insurance.
Health insurance since the early 80s has been a rapidly growing part of paying for a hospital bill. Insurance is and always will be an all or nothing deal. Whenever Insurance becomes part of a marketplace it sets group rates and raises prices for those without insurance. This alongside Pharma patents, costs of medical equipment, and a disturbingly small pool of workers has helped to create some of the unusually high medical costs we see today.
Because healthcare insurance has become part of an employee’s compensation, healthcare is more often the primary means of payment for most medical groups. The employers bargain with insurance companies for rates and plans, those insurance plans present proposals to medical groups. For the most part the conversation regarding what you pay for healthcare is never up to your needs, and the services you choose from are what the companies have agreed upon. Limiting your choices as a healthcare consumer.
Exchanges allow for consumers to pick plans they would have otherwise never seen. Their major limit is their geographic region. If you’ve used Covered Ca, Healthcare.gov or even a private exchange you’ve seen how much better many of those options can be.
Payment without insurance is always higher, and if you’re savvy you might be able to negotiate a payment plan with the hospital’s billing and/or finical assistance dept.
But regardless you’ll pay more. This is one of the fundamental problems the ACA attempts to alleviate. The reality that if you’re employer doesn’t give you benefits(usually not fulltime), underemployed, or hanging income-wise out between 17k and 40k per year: you simply go without insurance, and risk falling into serious debt/health problems when something bad happens health-wise.
It also alleviates the issue of employer based competition by opening up the markets to consumers via exchanges.
In our modern society, being so close quarters and risking illness/injury daily, it is necessary. So… I guess I should get to why I’m on this subject right now. Well, the reason I’m talking about this is because this last week the Congressional Budget Office announced its projections for 2015. The ACA (Obamacare) has a very interesting track record.
While there are a lot of disagreements as to why these changes are occurring and how it affects us, esp. with King V Burwell presently in the Supreme Court. To insure our health as a nation, the subsidy is an important factor alongside the exchange.
What’s noted here are some relevant facts: Affordable Care Act(Obamacare) will have lower projections in terms of cost and number of people covered using the exchange.
Here’s the neat bit of all of this, since we’re halfway between a census it’s hard to have spot on population projections, but 6 million less non-elderly people than projected is a doozy. With projections the relationships between the numbers are important. The goal of the ACA was the lower the number of uninsured. Expanded healthcare to 26 under parents plan, lower of full-time work requirements, the subsidy/exchange program, and 400% poverty wage definitions helped this relationship are all parts of the ACA that help accomplish this.
As Table 2 illustrates there is a drop of enrollees in exchanges and Medicaid. There is also an overall shrinkage of about three million people. Two things will change these numbers over time: As states allow their constituents to use exchanges, and as signing up through an exchange becomes more user-friendly we’ll see better reflections.
While politicians bark at each other, the key to keep in mind is the relationship between the numbers.
Those signing up for exchanges vs. less uninsured is nearly the same (13/20) 65% for 2013 projections while (11/17) about 64.471% for real 2015.
This relationship implies the success/failure of the exchanges as it relates to helping those who are without insurance, in comparison to projected numbers. The numbers are not much different..
Those benefiting from the ACA’s exchange and expanded Medicaid definitions also are very similar from 2013 projections (20/24) about 83.33% while 2015 real (17/21) about 80.95%.
This relationship implies the success/failure of the ACA’s exchange program and expanded Medicaid definitions, in comparison to its projected numbers. Within one year, a little more than 80% of the United States’ uninsured population gained insurance they otherwise wouldn’t have. It’s actually more than that, but the table 6 has more data to better reflect that question. This number is a close expectation of the direct effect of the program.
These are the big numbers most people are talking about regarding the success of the ACA/Obamacare. that overall Costs are down. Woohoo! Just Kidding. It’s really not that big a deal, spending allocations are very hard to project without a few years of historical comparisons.
Again, Table 4’s numbers reflect the overall shrinkage in projections for 2015 vs. actual. This is just a more in depth table of where that exchange enrollment from table 1 looks like. What’s important to note is that more people signed up who are unsubsidized than expected. Realistically this implies a success of offering exchanges to consumers, rather than the importance of the subsidy. This implies that states not allowing exchanges (state by state means that it’s plans better reflect their constituents) penalize their residents by lack of consumer choice at the very least.
If you want to count a huge success of comparative projections… it’s right here: Spending per enrollee dropped, by $1,540 per year.
It cost 30 billion dollars less than expected for its subsidies. The huge drop in per price enrollee eliminates the 3 million less enrolled(than projected) as a being a major factor in that cost reduction. Which means that as the program grows, it will cost less than expected overall.
Table 6 shows clearly and definitively that an overwhelming majority of uninsured population now has coverage. Success is hard define though, because yes, this is a goal of the ACA, however, it’s still missing a lot of people.
The trouble with a lot of this is that there were no clear “Success” guidelines given to the general public. What a politician says to the people, and how s/he defines a metric are often different. The more flowery language gives a program lots of room to fail or succeed. But as we’ve all seen, it also opens the door for serious slanted criticism, and interpretation. So instead of speculate what the actual goals of the program were, let’s look at the impact.
Warning here be minor economic analysis:
There are two million less uninsured than projected, and one million more enrollees did not use subsidies. These factors helped keep the percentages about the same as projected. As the number of people who are insured rise, it’s going to affect what those without it are paying nationwide. By using healthcare insurance, their rates are already bargained and while they are the patient they’re not entirely the consumer at the hospital.
e.g. If a thousand people pay rates, each one of them has a voice. Two hundred of them band together to bargain collectively under the name of insurance. Collective bargaining allows groups within that thousand people to command better rates by demanding a certain price. Because the hospital wants a guarantee that it can get those two hundred people lower rates can be negotiated. This in turn can push prices higher for everyone else. When the bargaining groups make up a good chunk of the market it can help push costs even higher. Especially since, the bargaining groups are usually stuck with an exclusivity deal with that hospital.
As more groups arrive and become more of the market, those who aren’t in the groups can face significantly higher rates than they used to. Eventually there is a point at which the groups will command the market together, at this time they will be able to break exclusivity either the group will seek more hospitals to grow its membership and/or because the hospital will try to compete with other hospitals. There’s not really a set point where this can happen, the number of competing hospitals, and area employers can play a large factor in the use and availability of buyers respectively.
The impact of the exchange will allow for more insurers to create more diverse products. It has and will continue to compete among pools of people who before were part of bargaining groups (usually through an employer) or simply individuals who didn’t have access to the insurance(be their rationale to go without: financial motivation, lack of knowledge or what have you).
What the ACA/Obamacare has created is a marketplace for competition, and as the percentage of insured Americans increases so will the prices for those without it, which will encourage them to be part of it.
Referring back to table 6, there is one area where the ACA/Obamacare is assuredly a success. It’s price per enrollee is much less than expected. Keep in mind that the projections for the uninsured population being 2 million less does factor into that, but it’s not enough to cause a drop that large.
The ACA/Obamacare has helped millions of people have access to healthcare, and it’s not as expensive as it was projected. In terms of efficacy and impact this isn’t government cheese, it’s a marketplace where you can afford to choose a health insurance program.