Recent changes to the way doctors test for and manage hepatitis patients in Alberta is allowing them to find and treat more cases and target a lesser known but more aggressive form of the disease.
Hepatitis is a group of viruses that attack the liver, and like many public health issues is a complex problem requiring specialist expertise, awareness of the problem and co-operation across the health-care system.
For some physicians and researchers in Calgary, this meant identifying where cases were occurring, where testing needed to improve, and reducing the sometimes years-long wait to see a liver specialist.
“We should look into this because we have a significant burden, and unfortunately we know from the preliminary data that we are not doing a great job,” said Abdel-Aziz Shaheen, an associate professor of medicine and clinician scientist at the University of Calgary specializing in liver disease.
To better identify the problem he collaborated with colleagues in the geography department to map where cases of hepatitis B were most prevalent in the province.
Hepatitis B is one of the most common types of the virus and is spread through contact with blood or other body fluids. If not treated it can become chronic and go unnoticed for years, eventually causing liver scarring, cirrhosis and liver cancer.
It’s estimated that hepatitis B causes 56 per cent of liver cancer cases worldwide. In Canada, hepatitis B affects roughly 262,000 people and approximately 34,000 in Alberta.
In his work with the geographers, Shaheen was able to pinpoint hot spots of hepatitis B in the northeast of Calgary, and in north and central Edmonton.
“When you correlate that with recent Statistics Canada and recent newcomers over the last 10 to 20 years, it matched very well,” said Shaheen.
This made sense, as the majority of hepatitis B cases originate from outside of the province.
In Canada and Alberta, universal vaccination programs have been in place since the 1990s, but given high immigration rates from areas affected by the disease, Shaheen expects the prevalence to increase.
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An added wrinkle is hepatitis D, which stands for delta. It is spread the same way as B, and the two are inextricably linked because delta can only survive in patients with hepatitis B.
Delta is a more aggressive form of the disease, with a higher likelihood of liver damage and cancer.
Shaheen looked at testing rates and cases of hepatitis D in the province, expecting they would match the previously identified hot spots.
“First of all, we are doing a bad job in testing for hepatitis delta,” said Shaheen.
Compared to other countries with similar rates of hepatitis B, Alberta is on the low end of testing for delta, he said. Furthermore, testing for delta was scattered across the province, meaning the patients most at risk were often not getting tested.
A silent disease
Early diagnosis for hepatitis B and D is crucial because by the time symptoms develop it can be too late.
“You can go from fully healthy liver to full hepatic failure or liver cancer in the space of weeks to months,” said Rachel Talavlikar, a family doctor and a director at the Calgary Refugee Health Clinic.
With treatment, the virus can be suppressed to levels that are undetectable.
Talavlikar is familiar with hepatitis given the location and demographics of her patients. But for physicians working in other areas of the province, this may not be the case.
“For most primary care doctors who have a panel of, say, 2,000 Calgarians, they may not have more than a handful of hep B patients,” she said.
For physicians, awareness means knowing the risk factors, when to ask for a test and what to do when a patient tests positive. Step one is getting those patients to liver specialists, which until recently was a major barrier.
Managing wait times and complexity
Earlier this year, liver specialists known as hepatologists at the University of Calgary published a study showing how they were able to dramatically reduce their wait times.
“We are the first city in the whole of Canada to decrease the waiting time to see a liver specialist from over a year and a half to just six weeks,” said Shaheen.
Carla Coffin, a hepatologist and clinician scientist at the University of Calgary, was involved in efforts to reduce wait times and create the Alberta primary care pathway. Clinical pathways are step-by-step guidelines that help physicians manage specific conditions. According to Coffin, this type of approach works well for hepatitis.
“Hepatitis B can lend itself very easily to this type of structured management because there are very structured guidelines for who could benefit from treatment and what’s the followup recommendations,” said Coffin.
For example, the pathway now recommends automatic testing for hepatitis D when a patient tests positive for B, which addresses one of the concerns raised by Shaheen’s research.
“That gap in testing for hepatitis delta is being closed,” said Coffin. “There’s been a fourfold increase in referrals for testing.”
On the front lines, Talavlikar says the reduction in wait times is key because patients lose contact with health care while waiting for a specialist. They might move away, or in the case of newcomers, be overwhelmed by things associated with moving like finding a job, providing for family and learning English, says Talavlikar.
U.S. Health Secretary Robert F. Kennedy Jr.’s hand-picked panel of advisers at the U.S. Centers for Disease Control and Prevention has voted to remove the long-standing recommendation to universally vaccinate infants against hepatitis B.
Despite these improvements, several challenges remain. The testing recommendations for hepatitis B are still based on risk or at the request of patients, meaning both physicians and patients need to be aware of risk factors.
A recent survey by the pharmaceutical company GSK found nine in 10 Canadians had little awareness of hepatitis B including the risk factors and harms associated with the disease.
Risk factors for hepatitis B are being born to someone with hepatitis B, living with someone with a chronic infection, receiving dialysis, living in or travelling to areas with high rates of hepatitis B, or high-risk lifestyles such as sharing needles for drug use or having unprotected sex.
“It’s not always the person who just arrived in the country three weeks ago that you should be worried about,” said Talavlikar. “These are Canadians who’ve been living here for decades, and who often are at the highest risk of complications.”
Coffin says some patients may not want to disclose some risk factors and the disease is still stigmatized, further complicating treatment.
And while there are drugs available to treat hepatitis B, mainly Entecavir and Tenofovir, these are not universally covered.
“These drugs can cost about $2,000 per year,” said Coffin, “and that’s a lot unless you have extended coverage.”
In an email to CBC News, the Ministry of Primary and Preventative Health Services said that Entecavir and Tenofovir are covered through government-sponsored drug plans for eligible patients with chronic hepatitis B.
“Albertans who need additional help with prescription costs may also qualify for programs such as Non-Group Coverage, Coverage for Seniors and supports for low-income Albertans,” the statement said.
On the question of testing and guidelines the ministry said, “Alberta’s current approach is based on existing evidence and screening recommendations, with testing focused on people with known risk factors, exposures or clinical indicators.”
The ministry also said the province continues to monitor the new evidence and recommendations related to hepatitis B screening, and that patients can request a test without disclosing risk factors.
Talavlikar is pleased with the work done by her specialist colleagues and believes the increased co-operation with primary care providers will produce positive results.
