May 15th, 2013 by Sherry Green
In March I shared a startling statistic – the number of unusable donated livers is going up, mainly due to the increase of donor obesity rates and number of cardiac deaths (you can read the full blog post here). This month we are focusing on the good news – specifically the advancements of automated liver perfusion devices and artificial livers.
Researchers in England have been working on the technology for an automated liver perfusion device since 1994, and just recently successfully transplanted two livers. This device changes the way a liver is stored between the time it is taken out of the donor and transplanted into the patient. Currently the liver is kept on ice, cooling the organ and slowing down the metabolism. This method has been used for decades, however it can lead to the liver becoming damaged and unfit for use as it is risky to keep a liver on ice for over 14 hours.
Automated Liver Perfusion Device
The automated liver perfusion device works in the opposite way by preserving the organ at body temperature and perfusing it – keeping oxygenated red blood cells running throughout. The liver can function normally, with blood circulating and bile production, for over 24 hours outside of the body.
With two transplants already a success, the team of doctors, engineers and surgeons plans to run a pilot trial with 20 more transplants at King’s College Hospital in London. Upon completion of a successful trial, the team will then apply for marketing authority with hopes of getting the device on the market by 2014.
Vital Therapies has entered phase 3 studies of their bio-artificial liver, the Elad. This cell-based liver is designed to stabilize liver function while the patient’s own liver heals itself, as the liver is able to regenerate damaged cells. Therapy lasts three to five days and involves the patient’s plasma going through the device which uses human liver cells to filter toxins and synthesize proteins and then returning the plasma to the patient’s bloodstream.
The Elad has not been without its struggles, as two companies have gone bankrupt while developing it. Artificial livers have been the focus of many institutions’ research, however this is the first device to reach phrase 3. Phase 3 trials are expected to be completed by the end of 2015. If successful the device could launch by the end of 2016.
Growing Liver from Stem Cells
In more futuristic liver advances, a liver bud has been grown from stem cells in Japan. The five millimeter bud was able to break down drug compounds, however it lacked bile ducts and did not produce as much albumin, a vital plasma protein, as needed for human liver function. Still, researchers are calling this study groundbreaking, with the ability to grow a functional human liver possible in the distant future.
3D Bioprinted Liver
Organovo announced at the Experimental Biology conference last month that they successfully created 3D bioprinter liver tissue. A 3D printer built up 20 layers of the two major types of liver cells – hepatocytes and stellates – to create in-vitro mini-livers that can perform many basic liver functions. Cells from the lining of blood vessels were also added, allowing the mini-livers to live for five or more days.
Creating a transplantable 3D printed liver is more than a couple years off; one of the biggest challenges will be to print the large branched networks of blood vessels needed by the liver. But in the meantime, the mini-livers can be used in labs to test the toxicity of drugs. Hepatocyte cells can replicate almost limitlessly inside the body, however,until now, there was no way to replicate them outside the body without losing some of their critical functions – essential for drug testing. Like the stem cell livers, 3D printed livers are poised to become a potential organ transplant game changer.
April 5th, 2013 by Sherry Green
We are excited to announce that Dr. Andrew Tai, a faculty member in the division of Gastroenterology at the University of Michigan, has received a 5 year, $1.08M research grant from the National Institute of Health (NIH)! This grant will allow him to continue his research on the fundamental mechanisms of how PI 4-kinases supports the HCV lifecycle. PI 4-kinases is a human protein needed for HCV to replicate, Dr. Tai is looking for ways to block whatever this protein is doing and cut the lifeline of the virus.
In Dr. Tai’s own words:
“All viruses are parasites in that they require a host cell to reproduce. Hepatitis C virus (HCV) is no exception to this rule. Indeed, work done by myself and several other groups have shown that literally hundreds of human proteins appear to play important roles in viral entry, replication, and release from liver cells.
My goals are (1) to characterize, at a molecular level, how some of these human proteins help HCV replicate and (2) to continue to identify new proteins that participate in the HCV life cycle. Some of these human proteins may be good targets for drugs that block their ability to help HCV replicate and thus may result in new therapies for HCV infection. One advantage to this strategy is that it may be more difficult for HCV to develop resistance mutations to such drugs compared to drugs that directly target viral proteins.”
This is exciting news for us at the Greenview Hepatitis C Fund as we helped provide the seed funds needed for the preliminary research. Specifically, we paid the salary of Dr. Tai’s research assistant, Dr. Hongliang Wang of Beijing, China, for the past two years.
Our work for this important research is not yet done though. Because of budget sequestration at the NIH, Dr Tai will only receive $217,500 out of the $250,000 for this fiscal year – a 13% cut. As he cannot cut salaries, this would have to come out of supplies, reagents and core facility use of instruments, amongst other potential cuts. Our foundation believes strongly in this research and we will be stepping in to help fill the budget cut hole.
The core goal of the Greenview Hepatitis C Fund is to provide seeding money for new studies to find a cure for HCV. The “big” money comes from institutes like the NIH, however researchers need funds to complete the preliminary data in order to apply for these large grants. We would like to congratulate Dr. Tai on this grant and look forward to supporting him and other HCV researchers in the years to come.
March 8th, 2013 by Sherry Green
A study published earlier this year in the Liver Transplantation journal revealed a startling statistic – the number of unused donated livers is going up! While it’s not up to the percentages of the 80’s (in 1988 66% of livers were unused),the number of unused livers has risen to 21% in 2010 from 15% in 2004 . Liver transplants were still considered experimental treatments through the 1970’s (first successful transplant with a one year survival was in 1967), so it is understandable why the discard rate was still so high in 1988. However, one would think that with all the advances in medicine, the unused number would be steadily going down. It turns out that issue is not medical advances – the quality of donated organs is significantly dropping.
So what makes a liver unusable for transplant? There are a large number of reasons why a liver is discarded – the two most common reasons being donor cardiac death and fatty livers. Cardiac death livers are inferior to brain-death livers since brain death liver donors are on life-support machines, meaning blood is still being pumped to the heart. In 1995 only 1% of unused livers were cardiac death livers; by 2010 that number jumped to 25%. What is unclear from the study is if the number of cardiac deaths increased by that percentage during those 15 years, or if cardiac death livers had been used in the past, but discontinued due to poor results.
One number we know for sure is going up is the number of obese donors. In 1995, 15% of donors were obese ; by 2010 that number rose to over 30%. The number of donors with diabetes and high blood pressure also jumped from 3% to 23%. We have been inundated by studies of America’s growing waistline and the effects of obesity, however, this is the first study I have seen that shows the effects follow the person post-mortem.
So how big of a deal is the rising number of unused livers? A pretty big one, considering that 20% of patients on the liver transplant list die while waiting for a new organ!
The question now is what can be done to turn this number around? It would be challenging, to say the least, to convince obese adults to lose weight so they can donate all their organs. (Although the fact that their organs can’t even be used after their death might frighten some people enough to take better care of themselves.) A better way would be to decrease the number of patients needing a liver donation, and the best way to do that is to cure Hepatitis C (HCV). Over 50% of liver transplant patients have HCV. With better treatment options, fewer patients would end up on the transplant list. A liver transplant is also not a cure for the disease; HCV will still be in the patient’s body and will infect the new liver – leading to a need for treatment or another liver. Cure HCV and the waiting list for livers will shrink; if fewer people need livers, maybe there will be enough usable donor livers and fewer patients will die waiting for an organ. Another option is to speed up research to produce artificial livers, as the current shortage of healthy livers is a troubling fact with no end in sight.
February 25th, 2013 by Sherry Green
Last month the Economist Intelligence Unit (supported by Janssen) released the most comprehensive, worldwide HCV report that we have seen to date. We highly recommend anyone involved with HCV to read the full report here, however if you do not have the time/patience to read the full 20 pages we have highlighted the main points below. Stay tuned for our take on the report in an upcoming blog!
“The Silent Pandemic”
Tackling Hepatitis C with Policy Innovation
Part 1: An iceberg looming in a fog of uncertainty
A big problem…
- Hep C (HCV) called “the silent pandemic” as virus takes long time to manifest itself
- 60-70% of those with HCV develop chronic liver disease
- 20-30% develop cirrhosis, typically after two or three decades
- As low as 10% for people infected when younger & healthier
- Higher than normal risk of developing hepatocellular carcinoma (HCC), most common type of liver cancer
- Healthcare costs of “end-stage” conditions can be substantial
- Average liver transplant cost $139,000
- 20% on transplant list die
- Infection of new liver with HCV is inevitable
- Disease prevalence higher in developing countries
- Egypt has highest infection rate, about one in five
- Rapid spread of disease prior to 1989, and time end stage conditions take to appear, means cirrhosis and liver cancer will become more common
- In U.S. total number of cases will drop 24% between 2005 and 2021, but number of deaths will rise because of increase in mortality rates
- In Egypt, liver cancer deaths rose from 4% to 11% between 1993 and 2009
- U.S. deaths attributed to HCV rose by 50% between 1999 and 2007
- Bigger killer in America than HIV
- “For Hepatitis C in Europe, we expect a peak of those who develop end-stage status in 10 – 15 years” – Achim Katz, manager Deutsche Leberhilfe
…of undetermined size
- Current HCV data poor & probably understate the problem
- Few countries have tried to obtain even the most basic prevalent information
- Within EU, only Netherlands has good data on HBV & HCV
- 16 EU countries data poor or non-existent
- Worse in Latin America & Africa
- In Asia-Pacific region,only China, Australia & India have reasonable data
- “In Asia there are countries where we don’t even have estimates of how many people are infected” – Jack Wallace, executive member of the Coalition for the Eradication of Viral Hepatitis in Asia and the Pacific
Good news and bad news
- Combination therapies improving cure rate including those with genotype 1 (most common type in Europe & North America)
- Cure rates up to 80% of cases, depends on factors including genotype, disease progression, how soon after infection treatment occurs, and existence of any co-morbidities
- Therapy both expensive & complex, less viable option for developing nations
- In wealthier countries with health systems with necessary expertise and resources, treatment is cost-effective
- Therapies frequently not used, even when healthcare providers can do so
- HCVwill bring economic burden in terms of lost work years
- Cost of sick days and lower productivity per HCV- infected employee was $8,352/year
Part 2: Barriers to tackling HCV
- Takes time for medical science to understand & development treatment, healthcare system to adjust & general public to become aware of the danger
Still much to learn
- Not til 2012 that team could explain exactly how the virus used the liver to replicate itself
- Some basics still unclear – why some reach end-stage conditions & others do not develop chronic HCV at all
- Drug development – from identification of a promising molecule to drug approval – takes at least a decade
- Healthcare systems notoriously slow at change and healthcare professionals frequently lack ability to treat (or even recognize) HCV
- 31% of family physicians were uncertain what to do in the event of a positive test
- Physicians with more than 20 years of experience were worst informed, physicians with fewer than 5 years were most informed
- Lack of trained specialists who can administer treatments found in Australia, Germany & U.S.
- Success against hepatitis B in 1990s can lead to complacency among policymakers about HCV
- General public confuse hepatitis A, B, C and D – think vaccinated against all
- Only 20% of Australian public thought HCV could cause cancer
Playing the odds in a dangerous game
- Why so few patients are treated? Barriers at every level
- Current drug regimen is complex with substantial side effects, both physical and psychological
- Current therapy is expensive
- Out of reach for many developing countries
- Speed of scientific developments delaying patients from receiving treatments
- Cost & inability to determine whowill develop complications are restricting use of medication
- Some doctors ask patients with lower risk to wait for better therapy with few side effects
- Existing treatments work better in early stages
See no evil
- More difficult set of problems from perceptions of the disease
- Developed countries transmission now highest among people who inject drugs (PWIDs)
- Their link has attached stigma to HCV
- 63% of world’s roughly 16M PWIDs have HCV
- PWIDs more likely to be homeless or live in sub-standard housing, have other physical or psychological conditions & be economically worse off
- Makes them imperfect patients for physically demanding, complex therapies
- PWIDs and healthcare professional frequently mistrust each other
- Stigma of disease has implications at government level
- Some politicians feel more comfortable inserting HCV activities into existing programs
- Easy to identify high risk behavior for transmission, long time it takes for complications to develop means this identification does not really help predict where worse problems will appear
Part 3: Finding a way forward
- Single, detailed HCV solution not practical
- Different countries have different genotypes, transmission routes & resources available
- Countries need a systematic approach
- Comprehensive approach needs to include: obtaining data for evidence-based policy, raising awareness & creating partnerships, prevention, care & treatment
Piercing the fog
- Lack of good data a problem, even in developed nations
- U.S. originally followed risk-based approach for screening
- Many infected long ago, don’t recall relevant activities
- CDC recommended testing all Americans born between 1945 and 1965
- Group accounts for 82% of infections
- Cost-effective in long run
- Not right approach for every country
- U.S. recommendation positive effect beyond screening – media coverage wide and positive
Raising public (and political) awareness
- WHO designated July 28 as World Hepatitis Day
- One of only four disease with a day – along with malaria, tuberculosis & HIV
- Campaign needs to raise awareness AND engage governments
Prevention: Healthier than treatment
- Prevention core component of HCV strategy
- U.S. incidences dropped by 85% after screeing of blood supply began in early 1990s
- Prevention strategies not perfect
- U.S. has seen 32 outbreaks in last decade related to poor infection control practices
- In Europe, Luxembourg & Liechtenstein still do not screen blood or organ donors
- In developing countries, unsafe health practices most common cause of HCV
- Egypt needs to tighten up on blood safety & reuse of equipment
- Prevention can be effective for cash-strapped countries
- Improve training & compliance of healthcare workers
- Stricter policies on reuse of medical supplies
- Auto destruct syringes cost-effective
- Screening blood cheaper than treatment
- Primary prevention is not only type
- Current therapies not universally effective
- Need chronic liver disease management plan
- No medication, information on lifestyle choices
- Even low alcohol use increases likelihood of developing cirrhosis or HCC
- High usage more than doubles risk, also brings on conditions quicker
Reaching and caring for patients where they are
- Developed countries need to find & treat HCV patients, especially current & former PWIDs
- Requires innovation as well as money
- Find patients, not wait for them to find doctor
- Netherlands set up website with interactive questionnaire to identify high risk individual
- At-risk individuals could get free, anonymous blood test
- Positive tests offered treatment
- Successful as low-cost & newly identified HCV individuals from hard-to-reach populations
- Western Australia created hepatology nurse practitioner (HNP) within the liver sector
- Position created as patients faced long waiting lists to see experts
- HNP can order tests, give diagnoses, prescribe drugs & refer patients as well as monitor treatment & adjust in light of any side effects
- Positive results – wait times down & faster attention to side effects has led to fewer complications
- Specialists can concentrate on more difficult cases
- 98% patients satisfied with HNP service
January 24th, 2013 by Sherry Green
After the holiday season, I found myself having a hard time getting back into the routine of things, both at work and at home. I couldn’t understand what the issue was as I was only out of town for two days and was getting plenty of sleep and exercise. Then it all dawned on me – since both Christmas and New Year’s Day fell on Tuesdays, my yoga studio was closed and I was missing my Tuesday evening class!! I was practicing on my own at home, but it just wasn’t the same, especially as my dog tries to help me in downward dog. And sure enough, on Wednesday the 9th,I felt completely back to normal and ready to take on the world.
I have been practicing yoga on and off for years – I started in college as a way to supplement my running career, however I was only doing self-practice the jock way, meaning I was paying more attention to stretching and not breathing. I finally started going to classes three years ago and it has been enhancing my mental state of being ever since (I was diagnosed with a severe anxiety disorder five years ago). The flexibility I have gained is really just an added bonus to my state of mental balance. After my class last week, I got to thinking, there have to be some benefits from a yoga practice for people with Hepatitis C (HCV) – both mental and physical. I divided the benefits into two sections – yoga to promote a healthy liver and yoga to help combat the symptoms of the disease and the side effects of the treatment.
To learn about how yoga helps the liver, I went to one of my personal Eastern Medicine experts – my girlfriend Christina, who is currently studying for her boards in Acupuncture (and also a big yogi herself). I learned that the Chinese view the liver as the “General” of the body, which acts as the mother organ to the “Emperor” – the heart. The liver is in charge of the body’s Qi, which translates to “life energy”, “life force” or “energy flow”. When the liver is not functioning correctly, such as with inflammation due to chronic HCV, the Qi doesn’t flow properly, leading to a host of symptoms including (but not limited to) depression, nausea & vomiting and muscle & joint aches.
In the poses section of the Yoga Journal’s website, there is a list of poses that are said to benefit the liver. I went through these poses with Christina discussing why each particular pose was listed; here are some of the favorites:
Big Toe Pose – the forward fold positions are helpful as the Qi can get “stuck” on the butt. The poses that stretch out the hamstrings and back of the legs are believed to help the Qi get back to flowing correctly.
Cat /Cow Pose – these poses are connected to the Qi’s urinary bladder channel, a major channel that extends from the head to the feet, and moves a lot of Qi. It also massages the liver (just like our muscles, the liver responds well to touch).
Cobra Pose – this pose will give the liver space and room to expand.
Boat Pose – this pose is a major heat builder, which can “turn things on” (in this case the liver and the surrounding organs) to wake up and be active.
Half Lord of the Fishes Pose – this pose moves the Qi along the gallbladder channels on the sides of the body. The twisting motion rotates the torso on itself, giving the liver an excellent massage.
While yoga doesn’t actually treat HCV, it has the potential to help ease many of the frustrating symptoms and side effects (both from the virus itself and from the treatment). The #1 benefit of any yoga practice is stress reduction, and anyone dealing with a chronic condition is bound to have extra stress in their life. Lowering your stress level can help combat some of the most common symptoms of HCV: fatigue, digestive problems (I personally have extreme appetite loss when I get overly stressed), depression, anxiety and insomnia, to name a few. The side effects of treatment reads similar to the list above and while yoga can’t help all of them (such as fever, hair loss and skin rash); I believe it can put a patient in a better mindset to handle the treatment.
A groundbreaking study in 2005 (done by the Fred Hutchinson Cancer Research Center in Seattle, WA) helped prove what many of us yogis already knew – the yoga mindset is real and it’s good for the body. This study examined mindful eating and a regular yoga practice in comparison to other forms of exercise, such as walking and running. Over a ten year period, the yogis had lower BMIs (Body Mass Index) and higher scores on the mindful eating questionnaires, which leads to the conclusion that yoga increased body awareness, specifically to hunger and satiety (you can read more about the study here). While this study focused on weight, I believe it can be translated into other areas as well – a higher body awareness makes one more conscious of their choices and more likely to make better choices because of how it makes them feel, not because of external pressures telling them what is right and what is wrong.
Where does one start practicing yoga? I highly (to the extremist high) recommend starting with a teacher at a yoga studio. While yoga can be studied at home with books and DVDs, many of the fundamentals, such as body alignment and breathing, are best learned in person. I personally prefer studios over a general yoga class at a gym as the classes will be more customized by style and level – although with the right teacher a class at a gym can be incredible. Style-wise everyone should start with the Intro/Beginner classes which will go over the basic fundamentals and introduce the different styles. Once you get the extreme basics down, I encourage newbie yogis to try out a bunch of different styles and teachers (this is where a studio comes in handy) and find the one(s) that “speak” to you. At this moment in my life, I’m getting the most out of what I need from yoga in my level 2 Vinyasa Flow class (I previously needed a prop-heavy Hatha-Vinyasa class). Christina, on the other hand, is all about Forrest Yoga right now. Your yoga practice will become an extremely personal thing and I truly believe everyone can find their own yoga niche. Happy learning and Namaste!
December 17th, 2012 by Sherry Green
One of the most important things a newly diagnosed patient with Hepatitis C (HCV) can do is choose the correct doctor. This is easier said than done as all doctors are not created equal (remember – someone graduated last in every single med school class). Below are some key points to keep in mind when selecting your specialist – usually a Hepatologist, but can also be a Gastroenterologist or Infectious-Disease Specialist (common with a HCV/HIV co-infection). Note that we will not be discussing insurance issues or location issues- just remember if your doctor is very far away will you need to consider getting a local/web support system in place to get through hard times between appointments.
- What was the doctor trained in – did they do a fellowship in Hepatology?
- Experience in treating HCV – how long have they been treating HCV? How many current/past HCV patients? How many patients have gone through treatment? What is their cure rate?
- How does the doctor stay up to date in HCV treatments? Read publications? Attend HCV conferences? If they have a question on a patient, who do they go to for advise?
- Is the doctor involved in research? Have they been published in a HCV-related topic? *This is the most important knowledge question as a published doctor will have the most up to date knowledge and an invested interest in the topic.
- How will your condition be monitored? What kinds of tests will be done to determine current status? Liver function tests? Biopsies?
- How will they determine to treat now or warehouse for a future treatment?
- Are they experienced with current drug treatments? All current treatments require Interferon and Ribavirin with either Boceprevir or Telaprevir – your doctor should be up to date and experienced with both treatments.
- What patient support systems do they have in place? Education, classes and/or support groups? How do they manage and monitor side effects? Do they use dosage adjustment, other medications and other methods to make the treatment more tolerable? *It is crucial to choose a doctor who provides reliable patient support and effective management of side effects because you are then less likely to drop out of treatment.
- Does the doctor participate in clinical trials?
- Is the doctor connected to a hospital that performs liver transplants? Most hospitals do not. For example, in Michigan only the University of Michigan and Henry Ford perform liver transplant.
- Does the doctor talk with you or down to you? Do they explain terminology and give educational materials? Do they appreciate and answer questions? Do they write down or give you printed material on difficult explanations/instructions? You shouldn’t leave appointments feeling confused.
- Do they genuinely seem like they care? Are they easy to get a hold of for follow up questions, either in person, by phone or email?
- Do they give any impression of being judgmental toward your lifestyle choices, either current or past? This should never happen, however there are some bad seeds out there and who should be avoided at all costs.
How to Find a Doctor
- Referral from Primary Care Physician.
- Google local hospitals and look up the Hepatology/Gastroenterology department – my doctors have bios and a quick Google search can bring up any published work.
- Hepatitis Central Physician Referral – this only lists doctors that others have submitted and reviewed, but does have some great information available.
- American Liver Foundation – select your area, select resources and contact local support groups for referrals.
Finding a specialist can seem like a daunting task, but having the support you need for your treatment is critical for success. Don’t be afraid to ask questions and meet with multiple physicians until you find one that meets your criteria. And don’t forget that you are evaluating the whole clinic and their ability to respond to your needs.
December 7th, 2012 by Sherry Green
Hepatitis means inflammation of the liver, but unless you work in the healthcare field or recently took a human biology class you might not remember what exactly the liver does. In this post we will look at what the liver’s role is in your general health and how exactly hepatitis affects this important organ. Remember – knowledge is power; the more you understand how the body works the better you will understand how treatment works and why healthy living is important.
The liver is a three pound organ that sits on the right side of your abdominal cavity below the diaphragm and next to the stomach. You cannot feel your liver as it is underneath the rib cage. The liver is a workhorse, performing a number of critical functions including (but not limited to): glycogen (energy), vitamin and mineral storage, bile production and excretion, hormone, cholesterol and protein production, decomposition of red blood cells and blood detoxification. In short, everything that enters your body is processed by the liver.
Here is a great video that explains the functions of the liver.
When the liver isn’t functioning correctly (due to a variety of health concerns, including hepatitis) a lot of things can go wrong. Some of the more common symptoms include: fatigue (due to overall loss of nutrients, vitamins and minerals), excessive bruising, jaundice (yellowing of the skin and eyes), skin problems (particularly itching), swelling of the lower extremities (abdomen, ankles, and feet due to the lack of the albumin protein), nausea and vomiting, hormonal problems (such as irregular periods) and emotional distress (depression, anxiety, mood swings). Quite a laundry list of symptoms, but goes to show how much impact the liver has on the body. Since the liver is such a strong organ it does its best not to complain, leaving many with vague symptoms that can be hard to recognize as a serious liver problem. Get Tested if you are experiencing any combination of these symptoms.
Hepatitis itself is an inflammation of the liver. Inflammation isn’t necessarily a bad thing – it’s our body’s response to self-protect while removing harmful stimuli such as pathogens, damaged cells, or irritants. The problem for the liver is when the inflammation becomes chronic (meaning the body cannot rid itself of the stimuli), it leads to scarring. The more scarred a liver becomes the less it is able to perform its vital functions. Cirrhosis is scarring that covers a majority of the liver and leads to liver failure. Once a liver fails, the only option for survival is a liver transplant.
A big problem of Hepatitis C is that our bodies suck at clearing it out on our own (only 15-25% of us can do so). While the other viral hepatitis’s are crappy in their own right, chronic liver scarring is not a major concern with these hepatitis’s as they are acute inflammatory diseases. The battle now for Hepatitis C is finding safe and effective treatments, a cure and, maybe one day, a vaccine.
November 30th, 2012 by Sherry Green
Dating can be hard. Sure, there are the people who met in high school and went on to get married and live happily ever after – but for the vast majority of us we navigate the singles scene in our 20s, 30s, 40s and beyond. “Putting yourself out there” (I think anyone who says that phrase to another person should be punched) means being vulnerable and sharing parts of yourself with another person who may or may not care enough to deal with your “baggage”. So how does one with Hepatitis C (HCV) deal with the singles world? How do you decide if and when to share your condition with another person and what is the best way to do so? Well there is no one size fits all answer, but there are some universal themes and topics that we can discuss.
The good news is that the stigma surrounding HCV is dying down, as apparent from the general tone on online forums on the topic of dating with Hepatitis C. Back in 2005/2006 the discussion threads were littered with misinformation and anger that someone would actually try to date another person without immediately saying they had HCV on the very first date. Now the frenzy has died down and commenters are much more levelheaded on the actual risks of the disease and the pros and cons of telling others.
When it comes down to if you have to share your status with the other person I would advise yes. Not so much as an issue that could be a health risk to them, but more in the sense that when you become emotionally involved with another person you should want to share the important aspects, good and bad, of your life. In a long-term relationship the topic would eventually come up and your partner would probably be very disappointed that you didn’t say something earlier. Not because they are scared you gave it to them, but because you felt like you couldn’t trust them with the information. I know I personally would be distrustful of a person who had the ability to keep that type of secret from me for that long and would make me wonder, what else are they hiding?
The bigger issue is when and how to share your status. There is no magical number of dates to go on before you “should” tell the other person – it’s more of a feeling that you can trust them with the information and, more importantly, you WANT to tell them. While I personally do not have HCV, I do have things about my life that some might consider “baggage”, so I am extremely familiar with the internal debate on when to tell. For me, the best time is sometime after the first date (please do not share super personal information on a first date, even if it’s the best date in the world, as it can totally freak the other person out – not the actual information that you are telling them, but because you are telling so much all at once) and before the two month mark. If I have been dating a person for two months and don’t feel comfortable enough to share my life story with them than that is a red flag and the person probably isn’t deserving of knowing. Everyone moves at different speeds, my two month mark might be someone else’s six month mark – but I would strongly recommend saying something before it becomes a serious, long-term relationship.
Do you have to tell someone before you have “intimate” relations with them? That is a grey area – while HCV can technically be considered an STD, it is not (as stated by the CDC) “efficiently transmitted sexually”. Provided that you take the proper precautions and use condoms, you don’t “have” to tell the other person. However, if your goal is to have a relationship with the other person, you probably should tell them beforehand to keep the trust.
The next issue is how to tell the other person. Face to face, as scary as it can be, is always going to be the best way. 90% of communication is non-verbal, doing it in person will help both of you really understand what the other person is saying. And if you do tell someone and they say all the right things but they get shifty eyes and start leaning away from you – probably not a person who is going to be good relationship material. Since not everyone knows about HCV, I would recommend bringing some pamphlets or printouts with you, letting you focus the conversation on your own story and how it relates to your life while letting the paper give the facts. And remember – you control how you deliver your story. Eye contact and a steady, confident voice will go a long way in reassuring the other person that while HCV sucks, it doesn’t define you as a person and you can get through it together. Rehearsing a few times in front of the mirror/a friend/your dog might be beneficial in making sure what you say and how you are saying it match.
On a final note, if even the thought of dating sends you into a complete panic, please seek help from a qualified therapist and/or support group. Everyone is deserving of love and companionship and having HCV does not in any shape or form make you “damaged goods”. Every relationship faces obstacles and challenges; HCV is just another hurdle in the path to an enjoyable and rewarding life.
November 19th, 2012 by Sherry Green
When I was 15 I really wanted my belly button pierced. I tried as best as I could to convince my mother but she was not caving and told me to wait until I was 18 (which, to a teenager, might as well have been a light year away). I am normally a master manipulator so this was particularly frustrating to me. A couple months before I turned 16 I went on a four week summer exchange program in Australia – I couldn’t do the school’s exchange program to Spain due to my sports schedule so my mom told me if I could find a good organization to travel with I could do one in the summer, she was NOT expecting me to end up Down Under (although at this point she had known me for 15 years so she shouldn’t have been surprised). The homestay part of my program was based in Brisbane and one day some of the other girls told me about a place that would do body piercings regardless of your age. I was faced with a dilemma – on one hand the thing I very much wanted, a belly button piercing, was easily within my reach. However on the other hand rebelling against my parents wasn’t really my style – I didn’t necessarily follow all their rules, but I would use my charm to make them think what I wanted to do was a good idea (yea, I feel bad for my mother too).
In the end I decided not to get the piercing – it would greatly disappoint my parents and that’s not really what I wanted to do after they sent me on a trip to the other side of the world. And surprise, surprise – ALL of the girls who got theirs done ended up with some really lovely infections, the salt water in the Great Barrier Reef and a new piercing turned out NOT to be a good combination. I learned a very important life lesson without any personal consequences – sanitation for piercings should be of the utmost priority! I was sure to tell my mom about what I DIDN’T do Down Under and was gifted with a pierced belly button form a reputable piercer for my 16th birthday J
I hope the infections from the salt water were the only side effects that the other girls experienced from their body piercings as unsanitary piercings and tattoos can lead to a host of health problems – including Hepatitis C (HCV) and HIV. While it is difficult to find any measurable statistics of HCV infections from piercings and tattoos (especially as 20% of those infected have no idea where they contracted it from), the risk is real – just ask Pamela Anderson, who says she contracted HCV from sharing a tattoo needle with her ex-husband.
We shouldn’t be scared of getting tattoos and piercings – I personally have a couple of each and have not experienced any health concerns from them, save the time I fainted from one of my tattoos (I didn’t eat beforehand – low blood sugar and pain are not a good combination). Below are some safety considerations to take into account before you let someone inject a needle into your skin:
- The shop should have an autoclave machine for sterilization (same thing hospitals use to sterilize equipment). In my experience shops have these in plain view, if you don’t see one ask – if they won’t show it to you get out of there.
- Needles must be single use and opened in front of you. In some states it is not illegal to reuse needles if they are sterilized, however I would never trust a shop that followed the law and not industry standard.
- Ink should be transferred into a single-use container and any leftovers disposed to avoid cross contamination.
- The tattoo or piercing artist should be wearing latex gloves. This is more for their safety as you are the more likely one to be bleeding, but if they aren’t concerned with their own safety they definitely aren’t concerned with yours.
- Avoid piercing guns as they cannot be sterilized in autoclave machines. Piercing guns are usually used by mall employees who have minimal training experience (I will try to forgive my mom for having ears pierced by a gun in the mall).
- The shop and artists should be fully licensed and insured – however these pieces of paper do not guarantee your safety so pay attention to their hygiene practices and LEAVE if anything does not look right!
November 14th, 2012 by Debbie Green
From the title ” Hepatitis C Medicine Shows 100% Cure Rate”, you’d think the silver bullet has finally been found and there is no reason to look further. Is this serious competition with Abbott’s recent all oral treatment success? Maybe. But wait. The first sentence says “a small number of patients.” At this point, the Gilead trial only involves 25 patients and one had to drop out. I’ll say that’s small! The Abbot study involved almost 571 patients with a 99% cure rate.
Gilead Sciences 100% Cure Rate
Apparently there was hope earlier that Gilead and Bristol-Myers Squibb would combine their drugs, Sofosbuvir and Declatasvir respectively, after a trial of 44 genotype 2/3 patients and 44 genotype 1 patients showed an almost 100% cure rate. There was a small outcry that these two pharmaceuticals should hash out their differences so the world can be rid of HCV. But again, the original trial showing success was not all that big. By the numbers, I’ll pull for Abbott at this point in the competition. Am I missing something? What do you think?
Gilead Sciences and Bristol-Myers Squibb Won’t Work Together