By Rose Egge Published: May 17, 2013 at 10:56 AM PDT Last Updated: May 17, 2013 at 2:11 PM PDT
SEATTLE – If you’re a baby boomer, the United States Centers for Disease Control is recommending you get tested for Hepatitis C, regardless of whether or not you have any other risk factors. But, treatment may not be readily available for newly diagnosed patients, and the Affordable Care Act could make things even worse.
Hepatitis C can lead to liver cancer, liver failure and cirrhosis – irreversible and potentially fatal scarring of the liver. The virus kills about 600 people in Washington each year, and death rates have been steadily rising since 2005.
Of the 3.2 million people in the United States living with Hepatitis C, the CDC estimates 75 percent are baby boomers, and the majority don’t know they’re infected. Researchers don’t know why prevalence is so high among this group, but many blame blood transfusions before donations started being screened for Hepatitis C in 1990, as well as unsafe needle practices before HIV education.
If Hepatitis C is detected, treatments can effectively prevent serious symptoms and even cure the virus in 70 percent of patients, said Dr. John Scott, an infectious disease specialist with the University of Washington.
Still, treatment options are not widely available and can be cost prohibitive, discouraging some people from being tested at all.
“It doesn’t make sense to test people and put them through that mental trauma if we don’t have treatment for them,” Scott said.
Scott said it can be challenging for providers to keep up with emerging treatment options, especially for rural doctors who are more isolated and see fewer patients.
“It’s not fair that people get substandard care just because of where they live,” Scott said.
Patients can also be unaware of new, promising treatment options. Michael Ninburg, executive director of the Hepatitis Education Project in Seattle, said most don’t know about emerging therapies that could cure Hepatitis C without the drug interferon, a common, but toxic therapy that can cause depression, fever and hair loss.
“Those who test positive are not getting treated because of horror stories they hear [about interferon,]” Ninberg said.
Kathy Perkins, a disease intervention specialist with the Snohomish Health District, said many of her clients chose not to be screened for Hepatitis C because they don’t believe anything can be done if they are infected.
“I talk to people on a weekly basis who are Hepatitis C positive but don’t know it’s curable,” Perkins said.
But even those who find treatment options may still go untreated because of insurance and cost concerns.
According to Scott, 50 percent of Hepatitis C patients are uninsured. While some drug manufacturers offer free medications to Hepatitis C patients who don’t have insurance, this does not cover the cost of provider care.
Perkins said cost can keep many from being treated.
“People feel like ‘Great I’m Hepatitis C positive now how am I going to pay for treatment?’” she said.
Perkins does not believe healthcare reform will help Hepatitis C patients seeking treatment. While Medicaid covers treatment, she said finding a doctor who accepts state-funded insurance can be challenging.
In fact, Perkins said the Affordable Care Act is likely to lengthen the waiting lists among doctors who do treat Hepatitis C.
“I think it’s going to be a big problem with not enough providers offering treatment,” she said.
Already, doctors at rural clinics have backlogs of patients waiting for treatment. Dr. David Hachey, a pharmacist in Idaho said his family medicine clinic can only see Hepatitis patients one day every other week.
“We are at maximum capacity,” Hachey said. “We have a large subset of patients preparing for treatment or waiting for new medications to be approved.”
Some doctors are trying to combat lack of treatment options. The University of Washington’s Project ECHO (see slideshow for more information) connects clinics from Alaska, Idaho, Oregon, Montana and Washington with specialists who have more experience treating Hepatitis.
“I know how to treat Hepatitis C but we’re dealing with nasty drugs,” said Dr. Geoff Jones, a Newport, Wash., doctor who participates is Project ECHO. “It’s nice to have a bunch of people to discuss side effects with.”
But, until treatment becomes more readily available and affordable, Hepatitis C deaths, especially among baby boomers, could continue to rise.