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McHENRY – Ray Roach reflects on the grim prognosis a doctor delivered to him during a hospital stay nearly four years ago and smiles.
He smiles a lot these days, in fact. Twisting free of a noose will do that for a person.
Roach, 52, of McHenry is among the first of a new crop of patients celebrating a remarkable cure. Diagnosed at age 46 with Hepatitis C, a liver disease caused by the Hepatitis C virus, Roach spent years on a health see-saw, and at one point, was near death.
He now is virus free.
Roach completed in September a 12-week regimen of the recently FDA-approved drugs Olysio and Sovaldi. Follow-up testing done immediately afterward and again in January showed no trace of the virus, said Roach and his gastroenterologist, Dr. Dale Coy.
“It was incredible,” Roach said, recalling the day he got the follow-up blood work results. “I wanted to run down the street shouting.”
Coy is a physician with Gastroenterology and Internal Medicine Specialists, whose offices are in Woodstock, Huntley, McHenry and Lake Barrington.
In his 20 years as a liver doctor, Coy has witnessed a steady improvement in treatments and outcomes for those with Hepatitis C, he said. Aside from Sovaldi, FDA-approved in October, and Olysio, approved in 2013, a newer drug called Harvoni also now is available. The drugs have far milder side effects than previous Interferon-based treatments.
Rather than juggling multiple pills a day, or dealing with the toxic side effects of Interferon or Ribavirin, Roach’s regimen consisted of minimal side effects – a slight headache once or twice – and required him to take just two pills a day. Those taking Harvoni take only one pill a day, Coy said.
“We’ve been waiting for the holy grail,” Coy said. “It’s here. However, it’s very costly, and many insurance companies don’t want to treat patients with low fibrosis scores. While there usually isn’t an urgency to treat, my philosophy is everybody should be treated.”
Olysio, the brand name for simeprevir, and Sovaldi, the brand name for sofosbuvir, cost $500 and $1,000 a pill, respectively. Roach’s 12-week course cost $126,000, a sum that would have placed it out of reach had Coy not helped Roach successfully apply for Medicaid approval of the then “off-label” treatment.
While Olysio was a newly FDA-approved drug, the combination had not yet been approved when Roach began his treatment last June.
Roach was among the first of Coy’s patients to be successfully treated with the new medicines, Coy said. The doctor added that he now counts about 60 patients who are newly Hep C free, as evidenced by what is called a sustained virologic response. Another 40 patients are completing a Harvoni regimen, for which he also expects a high cure rate.
“This is, to my knowledge, the first time we’ve been able to cure a virus,” Coy said. “It’s one of the most exciting developments in medicine.”
Tallying cure rates of 94 percent to 99 percent, the ramifications of recent Hepatitis C breakthroughs are vast. Three million to 4 million people in the United States have the virus, although many may not know it. Some who are infected never develop symptoms, while in others, the virus is present for years before symptoms arise.
Early symptoms may include fatigue, nausea, fever, abdominal pain, loss of appetite, vomiting, joint pain and nausea.
As infection progresses, it can cause chronic liver disease, cirrhosis, liver cancer and death. Drinkers are at greater risk for severe illness or death, Coy said.
Roach met Coy during an emergency visit to Centegra Hospital – McHenry in March 2011. He’d been diagnosed with Hepatitis C two years earlier after suffering from severe nausea and symptoms associated with diverticulosis, plus jaundice, or a yellowing of the skin and eyes.
Roach said he never has used intravenous drugs, among the chief ways the blood-borne virus is spread. Nor has he had a transfusion or received a transplanted organ – also risk factors for those who received blood products prior to widespread testing in the late 1980s, and for those who received donated organs or transfusions before 1992.
“I have no idea how I got it,” Roach said.
What Roach does know is that the path he followed after his diagnosis was not in his own best interest.
“I drank too much for a few years,” he said, noting that the diagnosis was followed in short order by a job loss, the end of a romantic relationship, and worsening illness, rendering him unable to find and keep new employment. Roach lost his Lakeland Park house to foreclosure, moved in with his mother, and eventually qualified for Social Security disability.
“Right around the corner from now,” he continued, “I’ll be four years sober.”
The turning point was the March 2011 hospital trip.
“My enzymes were off the charts,” Roach said. “My liver was ready to shut down.”
Dr. Coy remembers visiting with Roach during that four-day hospital stay.
“There are people you instantly take a liking to,” Coy said. “Ray, you could tell, he’s a nice guy.”
After examining Roach and looking over his lab results, Coy delivered a blunt warning, Roach recalls.
“He said ‘It’s not maybe, it’s not you might, it’s you will die if you don’t stop drinking,’” Roach said. “He doesn’t sugar coat it.”
Coy said heavy drinking is unhealthy for anyone, but for those with Hepatitis C, it’s disastrous.
“Hepatitis C is an illness that causes damage very slowly, unless you’re a drinker,” he said. “If you’re a drinker, one plus one equals three and your liver disease will progress much more quickly.”
Roach was in liver failure when he showed up at the hospital, Coy said.
“His eyes were deeply yellow,” Coy said. “He had lost muscle mass. He was thin. He had an abdomen full of fluid.”
Roach took Coy’s warning to heart. He has been sober since that day, March 31, 2011, he said.
“It was the night before my daughter’s birthday,” Roach said of his stepdaughter, Jennifer Baxley. “She was going to be 27. … I had enough incentive.”
Had Roach not taken that step and stuck with it, he would not be among Coy’s growing number of Hepatitis C-cure stories today, Coy said. Roach said he is feeling well, and has put on weight in recent months. Freed from the prospect of possibly transmitting the virus, he has a new outlook, and even a new girlfriend, he said.
“Look at him,” Coy said, seated near Roach during a recent interview at Centegra Hospital – McHenry. “It’s extremely gratifying and extremely rare — only one out of five people will actually listen to your advice and ... quit drinking.”
Coy was part of a team of doctors who researched Interferon treatments for Hepatitis C sufferers in the early 1990s. The progress during the last two decades has been remarkable, and is continuing, he said.
Roach, for one, is grateful.
“It’s like a big burden’s been lifted off of my shoulders,” he said. “There’s a cure now. I want people to know.”
People who have Hepatitis C should discuss new treatment options with their doctor. If insurance is insufficient, pharmaceutical company programs or patient assistance charities may help.
More information:
Hepatitis C is a disease caused by the Hepatitis C Virus, or HCV. It infects the liver, and can cause cirrhosis, liver cancer, liver failure and death. HCV is spread by blood-to-blood contact. Most at risk are those who:
• Received a blood product for clotting problems before 1987
• Received a transfusion or organ transplant before July 1992
• Use intravenous drugs; share IV drug paraphernalia with others
• Received a tattoo or piercing in a non-professional setting
• Are promiscuous or have had sexual contact with a known HCV-positive partner*
• Are born to an HCV-positive mother
• Have been on long-term kidney dialysis • Have had persistently abnormal liver function tests
• Were notified they received blood from a donor who later tested positive for Hepatitis C.
* The risk of sexual transmission is believed to be low, unless blood is present.
By the numbers
3.2 million: Estimated number of people in the U.S. with chronic Hepatitis C
17,000: Approximate number of U.S. residents infected annually
8,000 to 10,000: U.S. deaths attributed to chronic Hepatitis C infection annually. 180 million: Estimated number of people living with the Hepatitis C virus globally.
Zero: Vaccines available to prevent Hepatitis C
94 percent to 99 percent: Hepatitis C cure rate with new drug therapies
Sources: Centers for Disease Control and Prevention; http://hepmag.com