In a room in North Portland, a team of volunteers filled Tupperware containers with bandages, set out small metal cups for cooking heroin and stacked boxes of sterile syringes. A small woman with dark hair pulled back into a ponytail introduced herself.
“I’m Nancy David. I like long walks on the beach. Or short walks in the yard, depending on my custody status,” she joked.
David is a volunteer with the Portland People’s Outreach Project, a nonprofit that tries to help people who inject drugs minimize the impact to their health.
The group is on the front lines of the effort to prevent the spread of an insidious blood-borne virus, hepatitis C, that is one of the leading causes of liver cancer in Oregon.
Many of the volunteers have used injection drugs, and are living with the hepatitis C infection themselves — just like David.
Her experience with the virus has motivated her to try to keep other people from transmitting it.
“If someone would have been like, ‘Hey, there are clean needles, in a bag, just use one,’ I would not have hep C right now,” she said.
David said she got the virus the only time she shared a needle with someone. It was the first time she tried heroin, before she learned where to buy her own clean needles.
She’s lived with a chronic infection for years now, and it’s started to scar her liver, making it harder for her liver to filter her blood and causing fluid to pool in her abdomen.
“It can be painful, and I can get really bloated from it,” she said, and then laughed and waved at her stomach. “Don’t get it twisted, this is also fat.”
Unlike many chronic illnesses that plague Oregonians, the infection that’s slowly destroying David’s liver can be cured.
For years, the only option for patients with hepatitis C was treatment with interferon, an immune therapy also used to treat cancer that had a relatively low success rate and devastating side effects.
But five years ago, a new class of drugs, known as direct-acting antivirals, hit the market and revolutionized the treatment of hepatitis C.
The new drugs cure more than 90 percent of hepatitis C infections, and they can stop the progression of liver disease. Patients take a course of pills that typically lasts 90 days — then they’re cured for life.
But in order to get the treatment, Nancy David needs to get it approved by her insurance, the Oregon Health Plan, the state’s version of Medicaid.
And Oregon limits access to the drugs for people on Medicaid.
“My doctor is pretty sure they cover it, but I’m not 100 percent sure. It is expensive, prohibitively expensive,” she said.
Dr. Brianna Susteric is the the senior medical director of primary care at Central City Concern, a nonprofit that works with homeless men and women.
Sustersic says that until recently, the state’s Medicaid program would only pay for the hepatitis C cure for the sickest patients.
“We had the most stringent Medicaid guidelines,” Sustersic said.
Oregon was in effect rationing the hepatitis cure because it’s expensive.
When the new anti-viral drugs first hit the market, they cost around $100,000 for a full course of treatment, which took about 90 days.
Oregon has one of the highest hepatitis C infection rates in the nation, with an estimated 95,000 people with the virus.
Doctors generally give hepatitis C a stage, from one to four, based on a patient’s degree of liver scarring, or fibrosis. The state’s Medicaid guidelines only approved the new drugs for patients with stage four fibrosis.
“As a medical provider, it’s really hard to look your patient in the eye, and tell them, ‘You’re not sick enough to get this treatment that’s curative at this point,’” Sustersic said.
Recent changes mean that some Oregonians who have been deemed not sick enough to receive the treatment will now be covered.
Competition has driven the price of direct-acting antiviral drugs down. Newer versions cost around $20,000 for a course of treatment.
In January, Oregon’s Medicaid program loosened its rules. It will now pay for hepatitis treatment for more people with less-severe liver damage, fibrosis stages two through four.
“It certainly includes a larger population that we can treat, and that’s great. These patients are younger, they’re not as sick. They do really well on the treatment,” Sustersic said. “At the same time, we still have a barrier there. Patients still need to prove that they are ‘sick enough.’”
Oregon’s decision to continue to limit treatment based on a patient’s fibrosis score conflicts with guidelines set by health professional groups.
The American Association for the Study of Liver Diseases and the Infectious Diseases Society of America recommend that all patients with chronic hepatitis C should be treated.
The groups note that treating patients early, before significant fibrosis has developed in the liver, appears to be a particularly effective way of reducing deaths associated with hepatitis C.
In 2016, Washington state faced a class-action lawsuit over its policies limiting hepatitis C treatment to patients on Medicaid. The state eventually agreed to settle the case and to stop limiting access to the cure on the basis of a patient’s degree of fibrosis.
The Oregon Health Authority says its prior authorization criteria for the drugs that cure hepatitis are established by the Oregon Pharmaceutical and Therapeutics Committee, an 11-person panel primarily made up of doctors and pharmacists.
A spokeswoman for OHA defended the limits and said the agency is doing its best with limited tax dollars.
The state spokeswoman noted that Oregon does approve hepatitis C medication without regard to fibrosis stage for one group of patients: people also infected with HIV.
Sustersic said that by continuing to withhold the cure from some patients, the state is undermining efforts to stop the spread of hepatitis.
She worries the cure still isn’t reaching enough people, or the people most likely to spread the virus: younger patients who are not yet feeling symptoms and still using injection drugs.
“If we can treat everyone who has hepatitis C, then we can eradicate the disease,” she said.
Back at the Portland People’s Outreach Project, Nancy David is hopeful she will be approved to get the direct-acting antiviral drugs that can cure her hepatitis infection.
David tried to get the medicine when she was an inmate at the state’s Coffee Creek Prison last year, doing time for stealing a vacuum cleaner.
“I wanted them. I asked for them,” she said of the drugs.
David said she was evaluated by a liver specialist while at Coffee Creek. That doctor recommended she receive the hepatitis C treatment, but she said the Oregon Department of Corrections declined to provide her with the drugs because she had less than six months left on her sentence.
The Oregon Department of Corrections confirmed that it requires 6 to 12 months prior to release to treat adults in custody for hepatitis C. The state agency spent more than $13 million on hepatitis C medication in 2017.
Agency officials say the six-month requirement is necessary for a variety of reasons — in effect to ensure that patients complete a full course of treatment and follow-up appointments before their release.
David said patients, particularly those with a history of drug use, have to jump through too many hoops to qualify for treatment.
“It just further divides the haves and the have-nots,” she said. “I feel like it’s a real struggle for the addict, the former addict.”
David has had her share of what she calls “epic fails,” but at 39, she’s still young and trying to start her life again.
She’s volunteering, she has a job working at a chain restaurant, she has stable housing and she’s sober.
She also has things to live for: three children. They’re why she’s anxious to get her hepatitis C treated.
“It will mean I can live on with them and enjoy life … and watch them grow up, watch grandkids,” she said. “Perhaps.”
About This Series
OPB is participating in a special reporting series, “Opioid Crisis: The Ripple Effect,” that takes an in-depth look at how the national opioid crisis is affecting individuals, families, communities and institutions in the Northwest.
This series is part of a public media collaborative funded by the Corporation for Public Broadcasting (CPB). This national initiative includes reporting from ideastream in the greater Cleveland area and WXXI in Rochester, New York, who, like OPB, explore how their local communities are affected by the crisis.