Plainfield, New Jersey
Diagnosed with Hep C in 2001
I am 53 years old and was diagnosed with hepatitis C in 2001. I have genotype 1a with a mutation called Q80K polymorphism. I eat a healthy diet, have never been a user of alcohol, tobacco or drugs, and have become very gentle with myself. Recent blood test, ultrasound and Fibroscan results indicate that I am healthy.
I can’t be sure how or when I contracted the virus, but I can point to at least 10 instances of possible transmission from childhood to diagnosis. I think I probably contracted the virus when I was in China and a medical doctor gave me acupuncture. I was young and trusting. If I could redo that event in my life, I would.
I’ve been battling chronic fatigue and body aches that have increased in severity over the years. I also have a chronic lung condition (probably genetic) that leads to lung collapse when I am in a weakened state. I won’t get into the details of what the lung doctor I went to said, but suffice it to say, he blamed me for having hepatitis C. He had no compassion, telling me, “And now you have to live with it.” We both thought that I wouldn’t be getting treatment because of the expense of the drug.
Since being diagnosed, I avoided treatment because of my belief that a safe and effective cure would be developed. I paid close attention to hepatitis C treatment developments. I was excited when Michael Sofia was successful in treating patients four years ago with the medicine he developed while working at Pharmasset. Three years ago, I began my quest to start treatment with that drug, which is now called sofosbuvir (Sovaldi).
One year after Pharmasset successfully treated patients with sofosbuvir and daclatasvir (Daklinza), I went to my local clinic for low-income people, hoping that they might be treating with the new medicines if they had been approved by the FDA. I signed up for charity care because at that time my state wasn’t providing Medicaid. I asked them about treatment, and they referred me to their infectious disease doctor who claimed to specialize in hepatitis C. When I met him, he had no knowledge of sofosbuvir, and I told him I would not take interferon. I was sad because he wasn’t up-to-date on the research.
I joined an internet support group and a member suggested I go to a highly regarded liver center. I applied for charity care there. None of this was easy. It was like pulling teeth. There were many hoops to jump through and lots of rules about how to jump through those hoops. I met with the lead doctor and I told him I wanted to be treated with sofosbuvir and daclatasvir, and he told me that daclatasvir was never going to make it to market. I told him under no circumstance would I take interferon or ribavirin. He told me about the combination of sofosbuvir and simeprevir (Olysio), and I begged to be treated with it. He said I had to be tested for the presence of the Q80K polymorphism, and if I tested positive for it, I couldn’t be treated with Olysio. He ordered blood tests and the results revealed that I had the Q80K polymorphism. I was so disappointed. I continued to go to the liver center regularly, and they told me they would try to include me in their studies, but that never happened, despite my follow-up. The lead doctor informed me that I would not be able to access the cure because my insurance company would not pay for the medicine unless my liver was cirrhotic.
Thanks to the Affordable Care Act, I was able to get Medicaid. That made things much easier, but finding doctors who accepted Medicaid proved extremely difficult. It took a long time for me to find a gastroenterologist and when I found him, I thought he was a sweet and good doctor. I asked him if he was prescribing Sovaldi to his patients and he said he was still prescribing interferon. Nine months later, at the Liver Center, I was told that Harvoni (sofosbuvir/ledipasvir) would be the best medicine for me, so I waited for it to be approved by the FDA.
In October of 2014, as soon as Harvoni was approved, I asked my gastroenterologist’s office if he was planning on treating his hepatitis C patients with Harvoni, and his staff said yes. With this doctor’s advocacy, I began treatment less than two months later. I was lucky; many people are being told by their doctors that they cannot be treated until they have irreversible damage to their liver and other organs. Six months after I completed treatment, the virus was undetectable. I am cured. I am able to exercise for the first time in 22 years without provoking pleuritic pain. I am no longer susceptible to urogenital infections. My thinking is slowly getting clearer.
Living with hepatitis C can be debilitating, cause much suffering, and may lead to premature death. The medical establishment should test and treat everyone as soon as possible. Being cured doesn’t mean that the patient’s health will return to normal, especially if the patient has had the disease for a long time. Poor and black communities in the United States are suffering the most from this disease. Those living in prison are not getting treated. For more about this, please listen to this message.
Every person has value. I believe our medical establishment does not understand this. Many doctors are angry with patients who probably contracted the disease through their use of illegal drugs. Those who deny treatment to the sick have to live with the great evil they perpetrate. As Jean Dominique said, “You can take the body, burn the body, but the spirit... you devils! the spirit... you criminals! the spirit... you assassins! lives on in our minds.”
To get an inside look at how the medical establishment views and hepatitis C, watch two leading Canadian specialists debate whether to treat or delay hepatitis C treatment. It should spur you into activism.
I thank Michael Sofia for developing the cure, despite the initial lack of support from the scientific community. I also thank those who participated in clinical trials so we could have these new treatments. And, I thank my family and friends for supporting me emotionally and financially.
I created a video timeline. It was done a year before I was treated, and documents my experience of living with hepatitis C.
What three adjectives best describe you?
I’m generally calm, a critical thinker, fiercely independent and a lover of the beauty in life.
What is your greatest achievement?
I think the most important thing I’ve done in life is helping people when they greatly need it: taking care of my mother, father and younger sister when they were sick and dying; helping my husband (now my ex-husband) set up his own law practice; financing a friend who needed to leave Cuba; giving my artwork to friends.
What is your greatest regret?
I wish I had taken better care of my mother when she was dying. She was my favorite person, but I was extremely depressed during the last year of her life. There was nothing I could do to prevent her death because she had reached the point of no return.
What keeps you up at night?
I usually have no problem sleeping. I sometimes stayed up all night long when creating art.
If you could change one thing about living with viral hepatitis, what would it be?
I would add hepatitis C to Social Security’s list of disabling diseases and give everyone money owed to them by Social Security.
What is the best advice you ever received?
A priest of the Congo religion in Cuba told me, “Put your health first. Don’t worry about work. You’ll be provided for.” Before that, I was extremely self-sacrificing. I still tend to be self-sacrificing.
What person in the viral hepatitis community do you most admire?
What drives you to do what you do?
What is your motto?
Love simply exists. Everything else is an illusion.
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My four cats; I have a large carrier in my closet to put them in just in case.
If you could be any animal, what would you be? And why?
A cat just because I love them so much
Plainfield, New Jersey