By Bob Aronson
“I was always exhausted to the point that I could not walk a block without having to stop and sit down to rest. The fatigue I felt was so intense that completing just a simple once over lightly housecleaning took days because I had to stop and rest so often. Nausea was a constant companion and my appetite came and went. Sometimes I would go all day without eating which seems to add to my fatigue. And then there’s the pain. The pain in the area around my liver was almost unbearable. Then I started the Interferon treatment and it all got worse“ (The words of a Hepatitis C. Patient).
Hepatitis C – The Stigma
“The stigma that surrounds Hep C is reminiscent of the early 80’s when the AIDS epidemic came to the forefront. The idea that only IV drug users get HCV is incorrect, much like the idea that only gay men can get HIV is incorrect. Many of us got Hep C through transfusions, some who worked in hospitals got it from accidental needle sticks. I am reluctant to disclose my disease because I’m tired of hearing, “So you were an IV drug user, huh” I wasn’t — yet people seem to want to blame us for the disease we have, some seem to think we deserve it. I am sick, what difference does it make how I got the disease, not a single one of us asked for it, no one would want to live this way. I wish people would be more understanding instead of so judgmental. (The words of another HCV patient)
The quotes above are from hepatitis C Patients. For privacy purposes I have withheld their names. As you read on you will find other anonymous quotes. I can vouch for their veracity,
There is a Cure for Hepatitis C , But the Epidemic is Growing
Here’s What You Need To Know
The Hepatitis C Virus (HCV) is a blood disease. You can only get it if the blood of an infected person somehow gets into your blood and attacks your liver. It is not airborne — sneezes and coughs don’t spread it, only blood does. Not only does Hepatitis C have the power to disable or kill its victims, the people who are stricken with it also carry its stigma and in a way are blamed for getting the illness that could take their lives. We will address the stigma issue more later, along with the facts and myths surrounding the disease.
The hepatitis C virus was discovered in 1989. Prior to that, it was associated with blood transfusions, but was called non-A, non-B hepatitis because the virus could not be identified. Up until now the most effective treatment for HCV was based on the drug Interferon, which was effective in some patients but carried some heavy duty side effects with it. While some internet medical sites say “Interferon has manageable side effects,” that’s not the story that patients tell. There are thousands of reports of debilitating fatigue, weakness (asthenia) so great as to limit one’s ability to walk very far, drowsiness, lack of initiative, irritability and confusion. Often, especially in patients with a history of depression, the condition worsens to include thoughts of suicide and in a few cases committing the act itself. While some people tolerated Interferon better than others, few tolerated it well and almost all patients prayed for something, anything that didn’t make you feel worse than the disease itself.
Interferon in conjunction with the toxic chemotherapy drug Ribaviron has been the standard treatment for HCV until recently. The interferon side effects are bad enough, say patients, but when combined with the drug Ribaviron the reaction can and often does get even worse. Some patients report the reaction to the combination of drugs was so negative it had become life threatening.
Finally by the end of 2014 some highly effective, interferon-free, Hepatitis C oral treatments or “cures” were approved. Gilead Sciences had two, Sovaldi and Harvoni and AbbVie’s introduced Veikira Pak. These effective meds come with a high price tag, however. It is hoped that the competition from several newer and yet unapproved drugs will bring the price down
One drug in particular, Gilead Science’s Harvoni, seems to be getting favor from the medical community and it is indeed a cure. In clinical trials, Harvoni cured hepatitis C after 3 months of treatment in about 94% of people who took it. Cure rates approached 100% after 6 months in patients whose hep C was harder to treat, because of cirrhosis (source: Gilead Sciences)
Harvoni most certainly is a cure for those who can afford it. The drug while highly effective, comes with an equally high price tag. That 3 month treatment program mentioned earlier can cost $95,000 and as of this writing many insurance companies are not yet on board. One source told us, “the protocol for my mom is 24 weeks this treatment cost $ 204,120.00” There is financial assistance available and links are listed elsewhere in this blog.
Harvoni is well researched and while calling it a “Cure” is accurate it is only recommended for patients with genotype 1a and 1b. Other genotypes still have to use Sovaldi (also a Gilead product) in conjunction with Ribaviron and some genotypes still have to use both Ribaviron and Interferon.
Sovaldi was released in December of 2013 but still had to use Ribaviron for all G types. Harvoni is a combination of Sovaldi and Ledipisvir and eliminated the need for Ribaviron in 1a-1b’s and was released in Oct 2014.
Space doesn’t allow us to take a detailed look at all the HCV treatments and we can’t do justice to Harvoni the Gilead Sciences cure either. We applaud the companies that developed these drugs, but no matter how wonderful the cure is, the disease continues because we still don’t have a vaccine that prevents people from getting the disease in the first place. The cure is only effective with people who have the disease and by the time it is identified they usually have already suffered incredible damage. We must keep pushing for a vaccine that will wipe out the disease before it can infect anyone. Right now there is no vaccine for HCV. They are working on it, but so far such preventive measures have proven to be illusive and the disease continues to pile up victims. It now kills more Americans than AIDS. If you want more information about the HCV and the various treatments these links will help.
Viekera pak https://www.viekira.com/
If you have Hepatitis C and your physician has recommended any of the treatments but you are unable to pay the price of the medicine you should know this. Harvoni manufacturer, Gilead offers free meds to the underinsured or patients who have been denied coverage by their insurance provider, if they meet financial requirements. There has been a great deal of confusion and misinformation about the “Coupon” offered by Gilead, so here’s the straight story. The copay coupon is available to anyone who is insured. It is not based on income and will pay up to 25% of the copay amount. The only restriction on the copay assistance is if the patient is covered by Medicaid or another government program, then they are not eligible. There are no financial requirements connected to the coupon.
People on Medicare with part D ( which they pay for) are eligible for assistance from Gilead if they are denied by Medicare or underinsured. They are not eligible for the coupon. They also have to sign a form saying they will not try to get reimbursed for any out of pocket expenses. The coupon is for those who have private insurance with a copay.
There are other resources as well and you can explore them by clicking on the links below.
Health experts estimate that over 3.2 million Americans have Hepatitis C and that worldwide the number of infected people is close to a quarter of a billion. Many, if not most, may be financially unable to get the cure.
“What is Hepatitis C and how do you get it?”
As noted earlier, Hepatitis C is a blood disease that attacks the liver. Simply put, in order to contract it the blood of an infected person must find its way into your blood. Here are the facts that dispel the myths. (http://www.hepmag.com/articles/2512_18750.shtml) You can get HCV from:
- Needle-stick injuries and exposure of open wounds or mucous membranes to infected blood.
- Transfusions. Blood or blood-product transfusion (especially before 1992).
Unlikely sources of infection.
- Piercing and tattoos. It is unlikely you can get HCV from tattoos done in a licensed, commercial tattooing facility. However, transmission of Hepatitis C (and other infectious diseases) is possible when poor infection-control practices are used during tattooing or piercing such as that done in prisons and other unregulated settings. More research is needed to be sure.
- Sexual activity. it is generally believed that HCV cannot be transmitted through semen or other genital fluids, unless blood is present. While the risk of becoming infected with HCV through unprotected sexual intercourse is very low, medical experts urge everyone to use safe sex practices whether HCV is involved or not.
- Giving Birth. Women who have HCV run less than a 10 percent chance of passing the virus to their babies during pregnancy or delivery,
- Breast Feeding It is also considered unlikely that HCV can be transmitted through breast feeding or breast milk unless the woman’s nipples are bleeding.
- Sharing a drug snorting straw. Yes, there is a chance, albeit, a very low one of being infected with the hepatitis C virus through sharing drug-snorting paraphernalia. Hepatitis C is a disease of the liver, but the virus lives in the bloodstream. Snorting drugs, such as cocaine, heroin or methamphetamine, can cause damage to the tiny blood vessels in the nose, potentially resulting in traces of blood being deposited on the tip of the straw or other device. Sharing snorting paraphernalia isn’t a common mode of HCV transmission, but the threat exists.
Hepatitis C is a terrible disease. Its symptoms often don’t show up for years and when they do it is because significant damage has been done. Here are a few abbreviated patient’s stories about their disease, how they got it and the cost of the cure.
Patient story @ 1. “Harvoni is extremely expensive. It is I believe $1152.00 per pill. The protocol varies by 8, 12 and 24 weeks, depending on the amount of liver damage and viral load. Do I believe the price is fair? That’s a very hard question to answer. I think that it is necessary to look at the bigger picture.
I have had HepC since between 1979 and 1985. I was in an auto accident and received several liters of blood and had several surgeries. I was not diagnosed until 2002 when I was so fatigued that I could barely functionI subsequently did a 48 week course of the horrific drugs, interferon and ribivarin which led to horrific side effects, three times weekly injections of Neupogen and two times weekly injections of Procrit. My white cell count dropped so low that I was hospitalized, transfused and taken off treatment at 40 weeks. It took me 2 1/2 yrs to recover. I progressed from there to cirrhosis, liver cancer, ESLD and two liver transplants in 09. So, in the bigger picture, when adding up the cost of liver disease from HepC and all it’s complications the price seems fair.
Patient Story number 2. I had previously treated with interferon/ribavirin for 48 weeks with weekly injections of procrit along with the occasional transfusion. This treatment almost killed me and I have many chronic health issues as a result.
I think Harvoni is extremely expensive, for those that don’t qualify for the co-pay offered by the manufacturer. I was able to receive that co-pay which was a total of $15 for my 12 week treatment. My husband and I were willing to pay whatever necessary for me to be treated by Harvoni because I have been symptomatic from the Hep c for over 10 years after being infected during a blood transfusion while giving birth to my daughter in the 70’s.
Patient Story number 3. The price is fair when you compare total cure to a transplant (lets say $96,000 vs $500,000 minimum for a transplant).
The cost is always a factor. I was lucky and appealed to my insurance company after 2 denials. I had to supply some of the research to the reviewing doctors to educate them that even though it wasn’t FDA approved for transplant recipients, it was made specifically for my genotype and it was actually fewer drugs than sovaldi/olisio (they wanted me to take that and I held out for Harvoni)
I think most of the people who have HepC got it years ago before they had identified non A/nonB as HepC. Mine was from a blood transfusion. I think today the blood supply is safe.
My message to others is this, find a way to get on one of these cures. They aren’t nearly as bad as the old regimens that were brutal and that many of us have lasting effects from being on them. These are relatively side effect free and it is best to take care of this before your liver becomes ravaged by the disease putting you in line for a transplant. That is a long line and the chances of dying while waiting for a life saving liver are getting larger. So many people die everyday waiting. I’m finally on the road to health with a new liver and noting will stop me now.
The preceding testimony is real, the stories are true. The names have been withheld to protect privacy, but we’ve only scratched the surface of the misery of Hepatitis C. The disease is bad enough. Patients don’t need the additional emotional pain caused by public misperception of the disease which is shrouded in myths that result in blaming the victim for getting the disease. Even some medical professionals believe that if you have HCV you were probably a drug addict who was infected by using a “dirty needle.” The truth is that fewer than half of those infected were drug users, but so what? Do we blame the victim of a shooting who happened to stop at a store in a high crime area for being there? Do we blame the carpenter who lost his fingers to a table saw for using it? Do we blame the physician who treats Ebola patients for getting the disease herself?
Blaming the victim is mean spirited and unfair. The supposition that all HCV patients were drug users is the product of rumor and not supported by facts. But again, so what? No one wants to have HCV. No one purposely sets out to get it. Just because you are in a position of risk, doesn’t mean you should be blamed for the resulting illness. It’s time we got the facts and showed some compassion and understanding. Blaming people for their health problems helps no one, whether it’s Cancer, COPD, drug addiction, obesity or diabetes. The fact is that most 21st century medical conditions are due to some combination of genetics, environment, and personal choice. So unless you believe that each of us brings on our own misfortune, then it only makes sense to get the facts and set the record straight.
Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me firstname.lastname@example.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love. You can register to be a donor a thttp://www.donatelife.net. It only takes a few minutes.