My life with hepatitis C
María José Gandasegui is hopeful a new generation of drugs will cure her of the virus
María José Gandasegui was 12 when she began to suffer from prolonged bouts of extreme fatigue. Her family had no idea what was wrong with her, and people around her began labeling her lazy. She tried to make up for it by spending extra hours studying at school.
She ended up with two university degrees, a PhD on 18th-century law, a job as a court clerk, and three children, all of which she managed despite long periods of exhaustion. Finally, at the age of 48, she learned that she had hepatitis C, a virus that had been continually eating away at her liver.
Now 66, the last few years have been particularly hard for Gandasegui: cirrhosis, an encephalopathy caused by liver degeneration that severely affected her ability to concentrate, and a liver transplant followed by serious complications that put her in hospital for five months, nearly killing her.
A year after the liver transplant, she looks well, but the virus has reawakened and is now attacking her new organ. Gandasegui hopes the Spanish healthcare system will provide her with the latest pharmaceuticals that have been shown to eliminate the virus in 90 percent of cases.
You slowly realize that you’re dying little by little”
She is now undergoing tests to determine the health of her liver, but waiting too long to begin treatment could be fatal for her and a waste of money for the state, which has already spent so much trying to cure her.
There are no figures on the number of people in Spain living with hepatitis C, but government estimates put the figure at around 700,000. In some cases, the liver functions normally; in others, like María José, a transplant is required. The Spanish Association for the Study of the Liver says around 30,000 people urgently need the newest drugs. The government says it will only provide funding to treat 7,000 people for the moment.
Gandasegui describes hepatitis C as “capricious.” “You never know when it will attack. You can go for periods when it seems to have gone to sleep and leaves you alone, and then it comes back. The doctors have no idea what is going to happen to you. You can feel fine for a time, but you have to come to terms with the fact that it will always come back,” she says.
She doesn’t even know how she contracted the virus. It could have been at the dentist, or while getting her shots as a child. But when she was diagnosed in 1996, she learned that several members of her family were also affected: her sister had the antibodies, and her mother was infected. Her grandmother had had a bout of hepatitis in 1952. “I was four when she fell ill. We think the four of us may have gone to see the same nurse and got infected, but it’s all guesswork,” she says.
“The $1,000 tablet”
- In January 2014, the European Medicines Agency approved sofosbuvir, which will be sold as Sovaldi, the first of a new generation of pharmaceuticals that in 90 percent of clinical trials have cured hepatitis C. Simeprevir, which will be marketed as Olysio by Janssen-Cilag, will be given the green light in May.
- But their arrival in Spain will be delayed. The government says there are around 700,000 hepatitis C sufferers in Spain, of whom around 30,000 urgently require treatment with these drugs, according to the Spanish Association for the Study of the Liver. But the Health Ministry refuses to accept the price the laboratories are charging, and wants to negotiate.
- In July, the Health Ministry and Janssen are due to reach an agreement whereby Olysio will be available through the national health system at a cost of €25,000 for a 12-week course of treatment. Talks between the government and Gilead, which markets sofosbuvir, have been delayed, meaning it will take even longer to become available. Officially the drug, known in the United States as the "$1,000 tablet," will be available for prescription from November 1 at a cost of €25,000 for a 12-week course of treatment.
- The government has set aside €1.25 billion for Sovaldi, which will be enough to treat 4,900 patients. The criteria for treatment are strict, and have been criticized by experts as going against scientific evidence. In response to widespread media coverage of the plight of patients with hepatitis C, the government has agreed to review its criteria, announcing it will now provide treatment for 7,000 patients in serious condition. At the same time, another innovative drug, daclatasvir, sold as Daklinza by Bristol-Myers Squibb, has come on to the market, and two others are due to appear later this year.
After she was diagnosed, she had regular blood tests that showed her hepatic levels were not good, but not sufficiently poor to stop her from living her life. Then, in 2004, at age 56, tests revealed that her hepatic enzymes had suddenly shot up. “That’s when I realized that the disease was out of control. What I had been so afraid of for years had suddenly happened.”
Now, unless the virus is overcome, it will kill her.
Until now, doctors have used inhibitors such as interferon and ribavirin, treatments with powerful side effects. “After four months I felt worse than before. It was like having a monster flu for 120 days. My entire body ached and I could hardly move.”
At that time she was working as a court inspector and traveling around the country, but she never took sick leave, preparing her reports from home after she was no longer able to travel. “After a lifetime fighting the virus, you try not to let the situation take over your life. You have to be strong. During that time, I would work a little, I’d lie down, and one of my daughters would make me something to eat, and little by little, I’d get things done.”
Her treatment didn’t produce the desired effect, and so she repeated the process, dealing once again with the appalling side effects. The nightmare would continue for the next decade. The virus was really kicking in now and would not stop until it had finished with her. “I just gave in. I could hardly get dressed. You reach a point where not only is your liver affected, but your entire digestive system. I had no platelets left, my spleen didn’t work, I had varicose veins on my stomach and esophagus … I was terrified that I would have a hemorrhage. Everything was bad,” she says.
In 2009 she was diagnosed with cirrhosis, but continued working at the High Court. “I had less and less energy. You slowly realize, although you don’t want to think about it, that you’re dying little by little.” In the summer of 2010 she said goodbye to her work colleagues, hoping to return in the fall, but she never did.
She was 62, and her disease seemed unstoppable. Her movements were limited to getting out of bed and walking a few paces to an armchair, where she would remain all day, until she returned to bed in the evening. When her hands began to tremble, she realized that things were fast getting out of control. “Liquid began forming in my abdomen, I looked like I was six months pregnant. I had peritonitis, and my legs swelled up. I couldn't drive because I kept falling asleep. I couldn’t even take part in clinical trials for new drugs, because I was so ill.” The illness began to affect her psychologically as well, and she was prescribed anti-depressants.
One organization says around 30,000 people in Spain need the new drugs; the government says it will only provide funding to treat 7,000
Her only hope was a liver transplant, which took 10 months to arrive: she says she can remember little from that time. “There are things that I know have happened to me, because people tell me about them, but I can’t remember them. It’s as though I wasn’t alive at that time. I looked terrible, I am told. I was cold all the time, even in August. My body itched all over, even my eyelids and toenails. I suffered from terrible cramps. The toxicity of my liver produced an encephalopathy that left me in a state of perpetual confusion. I didn’t understand what was going on around me.”
Small in stature and slight, María José required a small liver, but children are usually given priority for these kinds of organs. Surgeons would have to delay the transplant until there were no minors on the waiting list. A week before she was told there was an organ for her, she broke down when her latest blood tests came back awful. “It just seemed as though everything was hopeless,” she says. But hope finally appeared on the horizon.
The transplant went well, but then complications set in: liquid in her abdomen, pancreatitis and tuberculosis. Her doctor said he had rarely seen anybody endure such suffering. “Those days in intensive care were the worst in my life: I felt utterly alone and was in such pain. You can no longer tell the difference between day and night. You get very scared. I had hallucinations: I saw dogs running around the room. I mixed dreams with reality. I thought that my grandchildren had been over the day before to drink hot chocolate. Another time, I thought I was in a television studio and that the doctors and nurses were actors. I had terrible hallucinations.”
While her life hung in the balance at Madrid’s Puerta de Hierro hospital – to whose staff she is profoundly grateful, as well as to the donor who gave her a new liver – her younger daughter was giving birth on the same floor. “The transplant and maternity units are next to each other. It was very strange imagining my grandson being born in the same place,” she says.
In late May, almost five months after her transplant, she was discharged from hospital. For now, she is able to live a normal life. She reads a great deal, is able to leave the house, and spends time with her five grandchildren. “My biggest fear is that the virus will eat the new liver, but I am confident that they will give me the medicines I need.”
Maria José has applied for the new treatment, and like others who have recently had transplants, she will be given priority. But the paperwork takes time, and it will be several months before she gets an answer.
In all probability, what happened to María José Gandasegui could have been avoided if the new generation of drugs had been available to her. “I often think about what my life would have been like without the virus,” she says. “It is an invisible disease, but it determines every aspect of your life. And it is very hard for other people to understand what you’re going through. The last few years were a nightmare, and I wouldn’t wish them on my worst enemy.”
At the same time, she says she feels lucky. And if she is able to access the latest medicines, she will get a new lease on life.