It’s been nearly 20 years since Rick Nash learned that he had hepatitis C infection.
Those two decades have included many doctor’s visits, tests, failed antiviral treatments, and years spent waiting on the donor list for a liver transplant.
They’ve also been filled with thousands of dollars in healthcare costs. Rick and his family have billed more than $6 million to their health insurance providers, and spent hundreds of thousands of dollars on out-of-pocket care.
If he hadn’t spent that money, he could afford to buy a house by now.
“I literally mean a house,” Rick told Healthline. “The amount of money that my family and me have paid over this collective time period has been about $190,000, $200,000, so it’s a house.”
Rick was only 12 when he noticed that his urine was unusually dark. He and his family went to their doctor, who referred them to a local hospital. After undergoing blood tests and a liver biopsy, Rick was diagnosed with hepatitis C infection.
“They tested for everything,” Rick said, “and when they found out I had Hep C, they were really confused, because a 12-year-old with Hep C is weird.”
Hepatitis C is a viral infection that damages the liver. In some cases of acute infection, the body fights off the virus on its own. But according to the Centers for Disease Control and Prevention (CDC), 75 to 85 percent of people who contract the virus develop chronic hepatitis C infection. This is a long-term infection that requires treatment with antiviral medications.
Chronic hepatitis C infection is rare in children, affecting an estimated 23,000 to 46,000 kids in the United States. The majority of children with hepatitis C have contracted the virus from their mother during pregnancy.
After learning that Rick had hepatitis C infection, his doctors encouraged his whole family to get tested. This led them to discover that his mother had the disease, too.
His mom began receiving antiviral treatment shortly after she got her diagnosis.
But for Rick, there was little his doctors could do. At the time, there were few treatment options available for children with the disease, so they just had to watch and wait.
“I had about 20 to 25 different meetings with either a GI [gastrointestinal specialist] or a general practitioner, just between the time that I was 12 and 18,” Rick recalled.
“I would go there every so often because they were interested in my case,” he said, “but they couldn’t do anything. All you could do is wait and see with a kid until they’re 18.”
Multiple rounds of treatment
Rick began his first round of antiviral treatment during his senior year of college, in early 2008.
He received an injection of interferon and ribavirin every week for six months. The side effects were terrible. “It made you feel as if you had the worst flu, like 100 times over,” Rick said.
When he finished his first round of treatment, the virus was still detectable in his blood.
His doctor then prescribed another round of the same medications, but at a higher dose.
This, too, failed to clear the virus from his body.
“It was basically double the dose of the first treatment, and it should not have been done. I actually look back at the whole situation, and I shouldn’t have even accepted it, but at the time, I was so desperate for a cure.”
In late 2012, he underwent a third round of antiviral treatment — this time, with a combination of interferon, ribavirin, and a new drug, telaprevir.
The side effects of this treatment nearly killed him, Rick said.
And it still didn’t cure the infection.
Thousands of dollars in care
Rick’s first three rounds of antiviral treatment cost more than $80,000 each.
In addition to those antiviral treatments, his doctors prescribed a litany of other drugs to manage the symptoms and complications of liver disease.
On multiple occasions, he also underwent a procedure known as banding. This procedure treated enlarged veins in his esophagus, a complication of liver scarring.
Rick had health insurance at the time, and without fail, he hit his deductible of $4,000 every year.
He also paid thousands of dollars out of pocket for aspects of his care that weren’t covered by insurance.
For example, living with chronic liver disease increased his grocery bills. He had to eat 4,000 to 5,000 calories per day because he wasn’t able to keep all of his food down. He also had to invest in low-sodium alternatives, which are often pricier than regular products.
He bought magnesium, potassium, and calcium supplements to help meet his body’s nutritional needs. He paid for tango lessons to help maintain his muscle mass and memory, which were deteriorating as a consequence of liver damage. And he purchased air purifiers to help protect his lungs, which were also feeling the effects of his condition.
Every time he started a new course of antiviral treatment, he replaced all of his personal care products to protect himself from reinfection.
“I’d have to replace out all of my toiletries — my toothbrushes, my combs, my deodorants, everything, and my nail clippers, my razor, anything that I used.”
“In total, the incidentals were about a grand to two grand per year, in terms of extra stuff that I would have to do or buy directly because of my Hep C,” he recalled.
Maintaining insurance coverage
To afford the costs of care, Rick structured much of his life around maintaining health insurance.
Rick was in college during his first round of antiviral treatment. As a full-time student under the age of 25, he was covered under his mother’s employer-sponsored insurance plan.
When he graduated, Rick got a job working for a local school district. But that position didn’t provide the benefits or job security that he needed.
So, he returned to school, taking a full load of courses at night while working up to 39 hours per week during the day. This allowed him to maintain coverage under his mother’s insurance plan.
When he aged out of his mom’s insurance coverage, he switched jobs to get the benefits he needed. Doing so delayed his third round of treatment by about two years.
He was fired from his job in late 2013 after missing too much work. Even though his boss knew about his condition, they continued to schedule meetings when Rick was away at medical appointments.
By that point, Rick had developed end-stage liver disease. Hepatitis C had damaged and scarred his liver enough to cause cirrhosis. According to the CDC, about 5 to 20 percent of people with hepatitis C infection develop cirrhosis within 20 years of contracting the virus.
Rick had to cope with several complications of cirrhosis, including ascites — a build-up of excess fluid in his abdomen. His legs were also swollen with fluid and prone to cramping.
Toxins began to build up in his bloodstream and cause his brain function to decline, making it hard to do basic math and other day-to-day tasks.
With these impairments, he knew it would be hard to keep a job. So, he filed for disability with the help of several disability advocates who guided him through the process.
Temporary remission, followed by relapse
After filing for disability, Rick began the waiting game. In the meantime, he bought a subsidized health insurance plan through Covered California, the state-based exchange established under the Affordable Care Act (“Obamacare”).
His family also “searched and scoured” the internet for manufacturers’ coupons and other assistance programs to help him afford the medications he needed to survive.
“We used every coupon we could, every discount we could. My parents really helped me with that because when you have brain fog as bad as I did, it’s hard to consistently do as much as you can.”
Rick began his fourth round of antiviral treatment in 2014, with simeprevir (Olysio) and sofosbuvir (Sovaldi). This combination brought his viral load down to zero, which meant the virus was no longer detectable in his blood.
But within a couple of months, Rick experienced a relapse. He contracted a bacterial infection, which allowed the hepatitis C virus to rebound.
“Unfortunately, it gave my virus an opportunity to return — and did it ever,” Rick said. His viral load “shot up to about 10 million” viral particles per milliliter of blood. Anything over 800,000 is considered high.
In a fifth round of antiviral treatment that started later that year, he received a combination of ledipasvir and sofosbuvir (Harvoni). This brought his viral load back to zero. But again, the virus rebounded.
“I was so depressed after that,” Rick remembered. “The next year, I just couldn’t figure out what to do.”
The final stretch
In 2016, three years after he applied, Rick finally became enrolled in Disability Medicare.
This was welcome news, as he needed a liver transplant and the costs of his care were mounting. Medicare would help take the edge off. His copay charges and deductible were much lower under Medicare compared to his previous plan.
After spending years on the donor list, Rick received a liver transplant in December 2016.
The total cost of his hospital stay, operation, and the first two months of post-transplant recovery cost almost $1 million. Thankfully, with Medicare, he only had to pay $300 out of pocket.
A couple of months later, Rick began his sixth round of antiviral treatment. It consisted of an off-label combination of ribavirin, sofosbuvir (Sovaldi), and elbasvir and grazoprevir (Zepatier).
Pitching this treatment to Medicare was a little challenging. There were very few data points on liver transplant recipients who’d undergone as many rounds of unsuccessful antiviral treatment as Rick had. After an initial denial, Medicare approved 12 weeks of the treatment.
Halfway through the treatment, Rick still had detectable levels of the virus in his blood. He suspected he might need more than 12 weeks of treatment in total to clear it. So, he applied to Medicare for an extension.
They denied his application, as well as his subsequent appeals to Medicare and Medicaid. He had little choice but to wait and see if 12 weeks of treatment would do the trick.
By the end of the 12 weeks, Rick had hit a viral load of zero. The virus was still undetectable in his blood four weeks after his last dose of medication.
And 24 weeks after his last dose, his tests were still clear.
Rick had achieved something known as a sustained virologic response (SVR). According to the U.S. Department of Veteran Affairs, 99 percent of people who achieve SVR remain free of the hepatitis C virus for the rest of their lives.
After almost 20 years, six rounds of antiviral treatment, and a liver transplant, Rick was finally cured of hepatitis C infection.
Advocating for change
This September, Rick celebrated his one-year anniversary of living without Hepatitis C.
Not only has the disease taken a toll on Rick and his family’s bank accounts, but it has taken a toll on their social and emotional well-being, too.
“The stigma of hepatitis C infection is massive, just because everyone kind of associates it with drug use or some sort of nefarious purpose, and it sucks because they treat people like they’re not people.”
Many people are afraid of touching or spending time with someone who has hepatitis C infection, even though the virus is only passed from one person to another through blood-to-blood contact. Someone can’t transmit it through casual contact alone.
To help address the stigma and misconceptions that surround the disease, Rick has been working as a community advocate for several years. He maintains the website HCVME.org, writes for HepatitisC.net, is a peer counselor for Help-4-Hep, and works with several other organizations on issues related to Hepatitis C.
“Having gone through what I went through, and having experienced it the way I did, I just try to be vocal,” he said, “and I try to encourage others who have Hepatitis C to be vocal as well.”
“To people who don’t have Hepatitis C,” he added, “don’t be afraid of it. It’s blood to blood. It’s not something that you need to be afraid of.”