“Daniel my brother you are older than me.
Do you still feel the pain of the scars that won’t heal?
Your eyes have died but you see more than I.
Daniel you’re a star in the face of the sky.”
Daniel Castonguay was a longtime confidant and a warm friend to me since the mid-eighties. His Québécois background was not as defining of his personality as was his supportive, sometimes cheeky, wisdom. “As we mature we take apart our immature ideas, collapsing them like cardboard boxes,” he once told me. “If we get too ambitious for change we can leave ourselves vulnerable and without enough structure for confidence.” What I didn’t know at that time was that Daniel had the Hepatitis C Virus (HCV). In hindsight, this was the truth that he had himself collapsed due to fear of ostracism and stigma; it was intelligent self-preservation. The denial, though, remains for the rest of us.
Fear was the operative word on the virus during the 1970s, as scientists searched to identify a disease known only as non-A non-B hepatitis. When HIV came along in 1981, all bets were off. After many years of looking, molecular biologist Dr. Michael Houghton led teams to identify an RNA sequence as this non-A non-B hepatitis virus, and their findings were published in the May 1989 journal Science. They determined it closely related to the family containing Yellow Fever, Dengue Fever and the West Nile encephalitis virus. Since discovering the Hepatitis C Virus (HCV), Houghton has astounded the world with his lab’s creation of an HCV vaccine, now in trials at the University of Alberta in Edmonton until 2019.
At the second Canadian Symposium on Hepatitis C, held March 4, 2013 in Victoria, British Columbia, participants heard how dramatically the landscape may now change for the estimated 170 million people in the world infected with this insipid, yet deadly, virus. Standard treatments, notorious for bad side effects, will soon be complemented by a plethora of treatment improvements. This would drive a cure cost down through an economy of scale. Yet, after listening to a debate over testing all baby boomers (born from 1945 to 1965 and now amended to 1975), Houghton was dismayed at what he heard. He made a saddened plea against complacency; he knows the Canadian track record only too well. After all, alarms have been sounding for years.
Prior to identifying HCV, it was widely adopted as an ethical practice for blood collection agencies to screen donors by asking for voluntary disclosure of high risk activities that could transmit the non-A non-B virus. In the ’80s, an untimely revelation from a whistle blower raised concern that the Canadian Red Cross was knowingly sourcing unscreened blood from an Arkansas prison. The agency continued buying and selling the prison blood, electing to do a year-long study instead of following conventional wisdom. It kept the study findings secret for three years. The “tainted blood scandal” in the 1980s eventually led to The Royal Commission of Inquiry on the Blood System in Canada in 1992, headed by Justice Krever.
Dr. Morris Sherman, leader of the Canada Liver Foundation (CLF) and a practicing physician, reviewed the consequences of the $16 million Krever Commission in a 2008 editorial titled “Hepatitis C: The Juggernaut Rolls on Unchecked.” The questions of negligence led to criminal charges, and eventually, 2.2 billion taxpayer dollars were paid in compensation to those affected. Regrettably, there was little effort to investigate the larger HCV epidemic; to date, 35 per cent to 75 per cent of HCV cases have not been identified (varying over the regions of Canada). With baby boomers aging, their knowledge of the disease isn’t adequate, according to a major new CLF report “Liver Disease in Canada 2013; A crisis in the making.” Another 2013 survey, “A global view of hepatitis C: Physician knowledge, opinions, and perceived barriers to care,” confirms many of these same problems in Canada occur on a global scale.
In 2001, I was terrified to learn about my own HCV infection; it is a steep learning curve. A biopsy suggested (with a 20 to 30 per cent error margin) that I was in what’s called stage one fibrosis, while Daniel was facing something far worse — stage four with decompensated cirrhosis. One day Daniel mysteriously decided to drive to the next community to ensure his camper was safe. Daniel didn’t own a camper. It became evident his mind was affected by a mild stage of hepatic encephalopathy — confusion due to liver failure. After an initial hospitalization, Daniel was released as an outpatient. I visited him within a month of his acquiring an apartment and discovered him totally bewildered, covered in feces and with little idea of what was happening. Over a subsequent six months in hospital, Daniel suffered a long and slow decline with one respite: Louise. As a friend first, and a nurse, she tended him day and night, with forgiveness, until Daniel slipped into the darkness that followed the warmth of her hug.
An estimated 1.5 to 3 per cent of people aged 43 to 63 in B.C. are infected with HCV, says a 2013 report from the B.C. Centre for Disease Control (BCCDC). This is higher than the national estimate of nearly one per cent (approximately 325,000 Canadians). Dr. Rob Myers’s 2010 paper, “Pay now or pay (more) later: tracking the costs of hepatitis C infection,” suggests we can track evidence of escalating mortality and morbidity from HCV by looking at HCV-related hospital costs, which in a study from Calgary were shown to grow four-fold annually between 1994 and 2004. Now, the BCCDC estimates that 15 to 30 thousand cases among baby boomers may be undiagnosed in British Columbia alone.
At the conference debate, Sherman said, “What I see is history repeating itself. [Back then] the Red Cross failed to adopt U.S. recommendations to screen blood donors. It was argued to be too expensive and that we didn’t have the evidence. Now, we have recommendations from the U.S. to test baby boomers. That is the same story happening all over again. ”
“Egypt does it [with a national strategy],” Sherman continued. “France does it. Germany does it. The U.S. does it. Australia has done it three times. Canada doesn’t. Canada doesn’t have a national strategy. It’s a crying shame.”
Dr. Houghton noted similar patterns after the discovery of the virus. Canada was slow to adopt screening. “There was a delay in implementing new methods to protect Canadians. [Now] to say we don’t have the evidence, I think is not proper, is not correct. There are going to be a lot of people diagnosed that otherwise wouldn’t. They can go on the upcoming new drugs. That is a must for Canada. We should not be hesitating. The quicker we can get a recommendation for that, the better!”
While the past HCV strategy doesn’t look good, the present doesn’t look much more effective, Houghton pressed. “I have also been very disappointed at the slow rate that new treatments have been implemented into the Canadian patient populations.”
Only after a decade of scientific scrutiny and U.S. drug approvals for new treatments are Canadian national drug reviews then initiated. These are duplicated by subsequent provincial reviews, which place restrictions on drug access that are not based on principles of medicine. To qualify for treatment, HCV patients must have their levels measured for a liver enzyme called ALT. The measure of ALT must be double normal levels — yet serious liver scarring can develop with no change in ALT. Motivated clients whose ALT levels are too low for them to access treatment may resort to dangerous measures if they don’t qualify. One such approach is to follow the diet used in the movie Supersize Me, Morgan Spurlock’s documentary film showing a month on a fast food diet can be harmful even for a healthy liver.
More specific tests that measure liver fibrosis are required to consider other treatment options. When the virus penetrates the portal linings in the liver, that’s stage one fibrosis; stage two is required to access treatment. Stage four is characterized by cirrhosis, when some of the 500 functions the liver handles are seriously compromised. There is a need for bi-annual ultrasounds to detect cancer in stage-four HCV, but this is not common practice in Canada despite a dramatic increase in instance of liver cancer. Up to 80 per cent of liver cancer cases are fatal within four years due to late diagnosis. Since a biopsy carries huge inaccuracies with a high price, mandating liver biopsies to diagnose illness is considered an irrational interference in doctor and patient decisions. In 2004 scientists developed non-invasive forms of fibrosis testing to replace the expensive ($1 500), error-prone and sometimes fatal liver biopsy. A much cheaper tool called the Fibroscan ($90) is of limited access. Similarly, a simple blood test called the Fibrotest is not available in Canada due to lack of public laboratory funding, even though the Fibrotest is the method of choice for privately funded biomedical industry innovators.
According to the Krever Commission, the greatest spread of HCV happened through blood product pooling, which increased during the Second World War. The virus originated about 400 years ago, likely having mutated from a similar virus in dogs. It is only recently known that HCV can cause blood-brain barrier dysfunction starting early in the course of the disease and progressing. Immune system responses block the cells that regulate blood flow in the brain, leading to transient symptoms such as depression, anxiety, lethargy and impaired learning. Neuropathy and dementia are more evident in HCV-infected people who are also infected with HIV. Fatigue is the most frequent symptom of HCV. While the loss of productivity and quality of life from HCV is enormous, emerging evidence demonstrates that liver and brain damage can be reversed with early treatment and nutrition. Yet a B.C. study published May 2012 in Liver International magazine showed that those infected with HCV often led lives of poverty.
HCV is spread by direct blood contact, including unsafe medical procedures and injection drug use. More recent studies suggest having a tattoo is a significant factor, even for those without other lifestyle risks. Using fresh ink is considered best practice, thus avoiding ink infected with a virus. Similarly, unprotected anal sex is the major cause of sexual infection; microscopic blood particles can contaminate lubricants (outside of prophylactics) if gloves are not used to prevent cross contamination. Infection risks are low for monogamous relationships.
Exciting new HCV treatments are progressing even quicker than imagined. The current standard of care works by boosting the immune system, while the next generation of HCV treatment works directly on the viral replication process. It delivers shorter treatment times, fewer or less-intense side effects and up to 100 per cent cure rates. New hope is dawning. Unfortunately, the current practice of placing HCV into chronic disease management under HIV agencies, without offering it the same access to drugs as HIV treatment programs, is not working. Mortality from HCV surpassed that from HIV/AIDS in 2007, while funding for HCV research in Canada has been one-fifth that of HIV research since 2001.
Canada should plan for HCV drug access now. Timely, compassionate, universal delivery would be proactive in regards to the constitutional right to life. The limited resources of doctors, nurses and other professionals must be spent on treatment — not fighting for access to drugs. Unless HCV is given more attention than swine flu, bird flu or mad cow disease, Canada will continue to defer this slumbering giant until the damage control costs become unsustainable for the country’s vision of universal health care.
A number of Daniel’s friends brought his 12-year-old son, Justin, to the hospital one evening to share time with his father. Daniel’s eyes lit up at one point and he smiled as he determined to have everybody form an imperfect circle around the room. As he tried to speak, I could see a small tear in his eye. He stood silent as a look of terror overtook him. “God,” I started to quote, “grant me the serenity to accept the things I cannot change, the courage to change the things I can and wisdom to know the difference.” Daniel smiled, looking around the room through tears of joy. It must have been exactly what he had wanted to say in what turned out to be the most important moment for the rest of his life.
“Daniel is travelling tonight on a plane.
I can see the red tail lights heading for Spain.
Oh and I can see Daniel waving goodbye.
God it looks like Daniel. Must be the clouds in my eyes.”
– “Daniel,” sung by Elton John, written by Bernie Taupin