With highest hepatitis C mortality rate in U.S., Oregon expands access to life-saving drugs

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• Judy Woodruff:

  Now the latest on a medical breakthrough that's starting to have an impact on a hidden, deadly epidemic in this country.

  New drugs can cure up to 95 percent of patients with hepatitis C, a virus that often leads to debilitating or deadly results. The drugs can save lives, prevent expensive hospitalizations and liver transplants.

  But some states are feeling the squeeze of the cost of this medicine.

  Special correspondent Cat Wise has our report for our weekly series on the Leading Edge of science.

• Cat Wise:

  Three-point-five million Americans are living with a potentially deadly virus, and half don't even know it.

  It's hepatitis C, a blood-borne pathogen which attacks the liver and can eventually cause serious liver problems, including cirrhosis and liver cancer. Three-quarters of those with the virus are baby boomers, exposed from unscreened blood transfusions, I.V. drug use, and other blood-to-blood contact prior to the early '90s.

  But now the opioid epidemic has led to a 20 percent rise in new infections from 2015 to 2016. One state where the young and the old have been hit hard by the disease is Oregon.

  Oregon has the highest hepatitis C mortality rate, per capita, in the country. It's estimated about 100,000 Oregonians have been infected with the virus and more than 500 die every year. It's been a very difficult disease to treat, but over the last four years, there's been a revolution in hep C drugs. Many are being cured around the country now, and here in Oregon, many are coming here to the Oregon Clinic for those treatments.

• Dr. Kent Benner:

  We never talked about cure of hep C until the last few years, and now we're all talking about cure of hep C.

• Cat Wise:

  Dr. Kent Benner is a gastroenterologist and hepatologist at the clinic in Portland. He says people are still dying from the disease, often because they haven't been tested and aren't aware they have virus until they are quite sick.

  But Benner says much has changed since he first started treating patients several decades ago.

• Dr. Kent Benner:

  Treatment at that time was interferon. This required injections, shots several times a week. Quite a few side effects. We felt we were doing well if we could cure 15 or 20 percent of patients.

  Since late 2013, there's been a remarkable development from a number of different companies. They have developed drug combinations that provide 95 percent cure rates in patients we treat.

• Cat Wise:

  Costly liver transplants are often the only option when the liver becomes too badly damaged. But at earlier disease stages, the liver often starts to heal once the medicines have cleared virus from the body.

• Dr. Kent Benner:

  Not only are we seeing liver function improve, but patients with more advanced liver disease occasionally can come off the transplant list.

• Cat Wise:

  Sixty-four-year-old Rob Shinney, who recently had knee surgery, is one of those cured by the new hep C drugs known as direct-acting antivirals, or DAAs.

  Like many others of his generation, he doesn't really know how he contracted the virus. Under the care of Dr. Benner, Shinney began a three-month treatment in late 2016 after his liver showed signs of moderate scarring known as fibrosis. Tests later confirmed he was virus-free.

• Rob Shinney:

  I had a serious chronic illness hanging over my head that I knew could kill me. And that's gone now.

• Cat Wise:

  We spoke at a local pub he visits now and again with his choir friends, something he never did when he had the virus.

• Rob Shinney:

  I swear I felt like I was 20 years younger. I had energy. I could do things. It's great just to be able to sit around and have a beer with everybody and, you know, just enjoy life.

• Cat Wise:

  The cost of the drugs used to cure Shinney, who has private insurance, aren't cheap. Since Gilead Sciences' Sovaldi first hit the market in late 2013 at a whopping $84,000 for a course of therapy, competitors have steadily lowered the costs.

  Last year, a new medication called Mavyret was released for around $26,000. Many payers often, though, negotiate even lower prices with the drug company. Still, the drugs are expensive, and they aren't a vaccine.

  If someone is cured, they can become reinfected. Access to the drugs varies widely around the country. A report last year by two national advocacy organizations found that many public and private payers choose to limit access to DAAs due to their cost, as well as other concerns.

  Oregon is among a number of states which have had restrictive Medicaid requirements, including denying coverage to patients in the early stages of disease and those who are abusing drugs and alcohol. But some of those restrictions are beginning to ease.

• Dr. Dana Hargunani:

  In January, we just started covering individuals with lower stages or lower levels of fibrosis.

• Cat Wise:

  Dr. Dana Hargunani is the chief medical officer for the Oregon Health Authority, which oversees the state's Medicaid program. She says, while the state is starting to expand access, costs are still a significant issue.

  Oregon has spent more than $94 million on the drugs since 2014, covering about 1,500 people.

• Dr. Dana Hargunani:

  The newer treatments for hepatitis C have a significant budget impact for our state. We had to get additional funding through the legislative process.

  We're trying to manage our limited resources to ensure coverage for those who need it immediately for the hepatitis C treatment, as well as all the other individuals in our Medicaid program.

• Cat Wise:

  Hargunani says another reason the state delays coverage until patients have mild liver scarring, not everyone needs the medicines.

• Dr. Dana Hargunani:

  One in five individuals who get infected with hepatitis C will spontaneously clear their infection. Right now, the data doesn't help us understand how to know which individuals will need to have a high-cost drug to treat and cure their infection.

• Dr. Brianna Sustersic:

  Luckily, he doesn't have any evidence of cirrhosis.

• Cat Wise:

  Dr. Brianna Sustersic is a medical director at Central City Concern, a federally funded health center in downtown Portland which serves a large number of homeless individuals, many of whom have substance abuse disorders; 25 percent to 50 percent of the patients have hep C.

• Dr. Brianna Sustersic:

  The Medicaid requirements have limited access to treatment for many of our patients. From a public health standpoint, if we are able to treat the population who is contracting this, and spreading it, then we can move toward eradicating the disease.

• Cat Wise:

  To prove that point, and to meet a big need, the clinic and a local syringe exchange program began a small drug company-sponsored study last year to treat patients who otherwise wouldn't have qualified for the medications; 56-year-old Kim Trano is now virus-free thanks to that trial.

  She says she's felt a lot of stigma being a recovering drug user and it was hard to learn she had initially been denied drug coverage. To those who would question giving expensive medicines to someone who might become reinfected, she says:

• Kim Trano:

  Everyone is worthy of a chance. If I were to relapse, I would all precautions not to be reinfected. And that's pretty easy to do. Most people know how to do that.

• Cat Wise:

  The new medicines combined with the big surge in those looking for treatment has led to a unique care model.

  Chris Hulstein is not a doctor. He's a clinical pharmacist and part of a new program at Portland's Providence Hospital. Over the past year, about 50 patients have been successfully treated by Hulstein and his colleagues. Another 30 are currently in treatment.

• Chris Hulstein:

  A lot of the specialists are very busy managing very complex patients, and that is their role. Having a pharmacist being able to manage the patient gets patients treated faster and more successfully than we ever have been able to do before.

• Cat Wise:

  Hepatitis C advocates are now working with the state and private insurers to open up more access to the drugs.

  For the "PBS NewsHour," I'm Cat Wise in Portland, Oregon.