It took Dalia Baker five years to get treatment after she was diagnosed with Hepatitis C.
Now, a year after entering the Hepatitis C program at El Rio Community Health Center, she’s finishing up treatment
Hepatitis C: What it is:
HCV is a contagious liver disease resulting from the blood born transmission and infection of the Hepatitis C Virus. Upon infection, a person can develop acute HCV, a short-term illness occurring within the first six months. Seventy-five to 85 percent of infected people develop chronic HCV. Over time, it can cause serious liver problems, such as cirrhosis, liver failure or liver cancer. Currently, no vaccination is available. It’s spread through sharing needles, needle sticks or passed on to the offspring off infected individuals. It’s possible, but uncommon, to be transmitted through sex.
El Rio’s bilingual Hepatitis C program works to improve the quality of care for patients disproportionally affected by Hepatitis C (HCV), such as the uninsured and underinsured, through education and support. The population of participants in the program is about 89 percent Hispanic, similar to El Rio’s patient demographic, which is roughly 75 percent Spanish speaking.
Program Director Dr. Scott Wilson said he realized there was a “significant prevalence” of HCV in the area when he started treating the condition in 2000. Wilson has two clinic days weekly dedicated to HCV patients, who he sees once a week. Although he doesn’t officially track the number of participants, he’s seen more than 100 patients since the beginning of the year. As a doctor of internal medicine he also sees patients outside of the program on the other three days.
Karyl Williams, El Rio’s integrative behavior health consultant, is also available for patients in the program for support with many of the emotional concerns associated with treatment. Finding support groups can be difficult, she said.
“Even with support groups, you can’t hear it all yourself,” Williams said. “There’s so much and such comprehensive information. Everyone hears different things.
Williams counsels patients about anything they need, including side effects of their medications, depression and anxiety issues. She also helps patients cope with and avoid the stigma associated with HCV, which can be similar to those associated with HIV because both diseases are transmitted through blood and bodily fluids.
Hepatitis C is the most common chronic blood-borne infection in the United States, with approximately 4.1 million individuals infected, according to the Arizona HCV Reports.
In Arizona, it’s estimated that more than 120,000 people are infected with the virus, half of who are unaware of their infection. It’s also estimated that as many as 85,000 people will remain affected for life, according to the Arizona Department of Health Services (ADHS.)
ADHS receives 8,000 HCV-positive reports annually, but because of the lack of visible symptoms, most individuals don’t discover they have the disease until 20 years after exposure.
Baker was diagnosed after she went to the doctor with a rigid, distended abdomen and a poor appetite. Prior to that, she had never experienced symptoms, so she had never been tested.
When the test came back positive, her doctor told her that she’d probably been infected many years ago.
“I thought, ‘I went to checkups every year, why didn’t anyone see this?’” Baker said. “Why isn’t this test included?”
The disease is especially problematic for that very reason, Wilson said: it isn’t a standardized test.
Due to Arizona’s current economic situation, there is no longer state-funded Hepatitis testing, although there are a number of public facilities in Tucson that offer free or low-cost testing for HCV.
“It’s being called ‘the silent epidemic’ because it’s typically asymptomatic,” Wilson said. “Things that you wouldn’t recognize as being Hepatitis until it’s too late.”
When Baker was first diagnosed, the insurance her employer, Tucson Medical Center, carried required that she be put on a list to wait for treatment coverage.
“I was too sick to work,” she said. “I couldn’t do my job, and I wasn’t getting treated.”
Baker was eventually fired. After she was uninsured, she was told about El Rio’s program and was able to receive treatment when she enrolled in AHCCCS.
See where you can find free testing sites in Tucson.
The majority of El Rio’s patients either have AHCCCS or are uninsured, according to Wilson. He explained that in the past, if a patient had no insurance, the pharmaceutical companies had programs to pay for the treatment.
A detriment to the drug therapy for Hepatitis C is severe and universal side effects that make it difficult for some patients to complete the yearlong treatment.
Baker said that during the last three months of her treatment, she suffered from weight gain, hair loss and chronic fatigue.
At the beginning of the year two new drugs with less fewer effects and a three month treatment time were approved by the FDA. With that shortened duration comes a substantial increase in cost
“For a three-month course, it’s $84,000. Kind of staggering,” Wilson said. “Before, for a year’s course, it would be between $15,000 and $20,000.”
Since the cost has increased, the pharmaceutical companies have now been requiring patients to sign up for insurance through the Health Insurance Marketplace, Wilson said. Now that the deadline to sign up has passed its unclear what will happen for the people who are still uninsured, he said.
Through the Affordable Care Act, the state is going to have to decide how much of the treatment they can afford to pay for with AHCCCS.
To enroll in El Rio’s program, call the main appointment line at 670-3909 and specifically register for the Hepatitis C program.
Wilson is hopeful that with the shorter treatment times and less serious side effects, HCV will someday be eradicated.
“Success rates are approaching 100 percent. It’s going to be if you take the treatment it’s going to work over 95 percent,” Wilson said.
As Baker struggles with the illness reaches an end, she is looking forward to relaxing and getting back to her normal life. Her plans for the future, though, are simple.
“I want to live at least another 30 years,” she said.