BACKGROUND TO HEPATITIS C

By Natalie Rock, RN

The test for diagnosing hepatitis C is an antibody test. Once exposed to hepatitis C, similar to exposure to other diseases or to a vaccination, the body produces an immune response by developing antibodies to the virus. In the case of hepatitis C, these antibodies do not indicate if the virus is still present or if the body has cleared the virus. The presence of antibodies to hepatitis C only indicates that the person has been exposed.

Once an individual has tested positive for hepatitis C it must then be determined whether or not the disease is active and if there is inflammation in the liver. This is done by testing for liver enzymes. The two common hepatocellular enzymes that are seen elevated in viral hepatitis are the AST and the ALT. Enzymes can be considered simplistically as "batteries." They supply the energy for the metabolic processes of liver cells so that the liver can manufacture proteins, produce clotting factors, produce bile, and detoxify chemicals and drugs from the blood. Every metabolic process has many steps and each step is fueled by one or more enzymes. Thus, each cell has many, many enzymes. Some enzymes are specific for certain types of cells, (such as cardiac enzymes), other enzymes are common to many different types of cells. Since the liver is so metabolically active it has many, many different enzymes that are classified according to which cells are releasing them. In a healthy liver, enzymes do not normally "leak" out of the liver cells, therefore there is usually only a low level of enzymes in the blood. If the liver cell is irritated and inflamed, there may be a "leaking" of the enzymes into the bloodstream and a constant low level of enzymes in the blood. If the liver cell dies there may be a sudden release of the enzymes and thus a transient high level in the blood. Liver enzymes may be elevated in the blood for many, many reasons, including alcohol, prescription and non-prescription drugs, fat in the liver (caused from diabetes, high cholesterol, obesity etc.), viruses (hepatitis A, B, C, D, and G), and metabolic diseases (Hemochromatosis, Wilson's Disease, Alpha-one antitrypsin deficiency). Therefore, if the liver enzymes are elevated a number of other blood tests need to be performed to rule out other causes of elevated liver enzymes. Keep in mind that the normal enzyme range in one lab may be quite different than the normal ranges for another lab.

There are also "liver function tests" that are performed to determine how well the liver is working. The liver has many specific functions and by testing them it is possible to determine whether the liver is having any difficulties. Blood tests to assess liver dysfunction are:

1. Bilirubin is an orange bile pigment produced by the breakdown of heme. Bilirubin normally circulates in the blood and is taken up by liver cells and processed into a water-soluble pigment which is then excreted in the bile. Failure of the liver cells to excrete bile or obstruction of bile ducts can cause an increased amount of bili in the blood and thus lead to jaundice or yellowing of the skin and eyes. Normally 99% of bilirubin is excreted in the feces and the rest in the urine but in liver disease it is excreted through the skin.
2. Albumin is a protein formed in the liver. Albumin is responsible for balancing the water concentration between the blood and the space between the tissues. When the albumin is low in the blood, the water in the blood vessels is forced out into the tissues. This results in an increase in fluid on the abdomen (ascites) and feet (pedal edema). Other conditions such as severe malnutrition, kidney disease, or extensive burns may cause a decrease of proteins in the blood.
3. INR or Prothrombin Time are blood tests used to assess the blood clotting factors which are proteins produced by the liver. These tests measure the time it takes for the blood to clot. Clotting factors are essential to normal clotting when a person is injured and there is a potential for bleeding. When the liver is scarred and is not functioning properly, the INR will become prolonged, meaning it takes the blood longer to clot. Patients with a prolonged bleeding time are at higher risk for bleeding.
4. Platelets are formed in bone marrow. Approximately one third of platelets are in the spleen and the rest circulate in the blood. Platelets aggregate to the walls of damaged blood vessels preventing blood from escaping. When the liver is scarred, the circulating blood is not able to pass through the liver as readily; this puts a back pressure on the spleen, resulting in a destruction of some of the platelets. A low level of platelets is called thrombocytopoenia. Other conditions that cause low platelets are idiopathic thrombocytopoenia purpura and pernicious anemia.

The blood test used to actually measure the presence of the virus in the blood is called a PCR test (Polymerase Chain Reaction that measures the HCV RNA found in the blood). This test was developed and became available in 1993. At present, this test is primarily only available in large centres conducting research. The PCR test is very expensive and subject to error if not properly stored and analyzed. There are two types of PCR tests: a qualitative PCR which provides a positive or negative result indicating presence or absence of the virus, and a quantitative PCR which gives the actual number of virus particles present in the blood. A PCR result is useful, prior to commencing therapy, during therapy, and post therapy, to assess the degree of response and whether the virus has been eradicated.

The replicative process of hepatitis C is not consistent or genetically uniform in its composition or structure. Due to this error in replication there are different genotypes within hepatitis C that have slight alterations in their genetic make-up. When the hepatitis C virus replicates a negative strand will first be formed as a template, from which a new virus (i.e., the positive strand) will then be produced. Like many other RNA viruses, the replication of hepatitis C is error-prone. The envelope proteins E1 and E2 are the most variable regions with the highest mutation rate at both the nucleotide and the predicted amino acid levels. The rapid mutation rate in these areas, which may allow the virus to escape from immune surveillance, indicates that these regions may be under selective pressure of the host immune system. The high occurrence of chronicity in hepatitis C infection may be primarily due to the role of immune selection of the virus (Anderson, Rock 1996).

Within each of the 9 genotypes that have been identified there are more than 30 subtypes. Often a predominate type is observed in a specific country or geographic area, indicating a geographic distribution of hepatitis C. In North America, genotype 1 is the predominate type. In British Columbia, genotype 1 is predominate (59.1%), followed by type 3 (22.7%), and type 2 (18.2%).

The genetic variability seen in hepatitis C may have an impact on the clinical course of the disease, treatment response rates, the development of a vaccine, and the prevention of hepatitis C transmission.

JOEY IN VICTORIA

I have just returned home from seeing Joey and Connie off at the Victoria Airport. Joe had already left to catch a ferry. What a fine family! I know that this was Joey's project, but we mustn't forget that Joe and Connie played a major part in the success of the trip. How fortunate we are to have such nice people doing this for us!

Yesterday was a beautiful day in this area. Some of us were at Brentwood Bay and we were joined by the mayors of Central and North Saanich and members of the local media, not forgetting Gary Lunn, our Reform M.P. The ferry was 20 minutes late arriving, and that was when I started to worry. Had I got the times wrong? How will this affect the rest of our plans? Well, they arrived safely, and, due to the time element, stopped at MacDonald's for a quick bite. By the time we had finished, about 25 members of a local cycling club were ready for us. They had a long, lightweight trailer with signs on the top reading "Joey Haché's Ride of Conscience, the Hepatitis C Society of Canada." This was a lightweight trailer, towed by one of the cyclists. The sign was double-sided, so that people standing on the sidewalk could see it as well as those passing by. The Central Saanich Police department has a vintage Black and White car, and they brought this out for us. We fixed up Joey's mum with my daughter's bicycle, and Gary Lunn changed into cycling gear, and we were ready. The Black and White led the way, with Joey, Connie, Gary Lunn and the rest of the cyclists right behind, Joe with his sign-covered van, and then yours truly. I had a sign on the back of my car reading "Tainted Blood a National Scandal" and ribbons in our colours. There was another car behind me, and then a regular police car bringing up the rear.

For those of you who don't know it, the Pat Bay Highway is very busy, especially on Friday afternoons, with ferry loads of traffic, usually racing along. Not this time. I looked in my rear view mirror and the traffic was backed up for miles. I said to my wife, "If only we had a cameraman in a helicopter we could claim all these people were part of the cavalcade." On the whole, the motorists were pretty good. We got a few nasty looks, but not many.

I had been told so many times by the police that Douglas Street was under all kinds of construction and it would take time to get through, so I cut out of the cavalcade so that I could warn the people at Mile "0" that Joey would be late. I got down there very quickly and parked and was telling a photographer that they would be another 20 minutes when he pointed over my shoulder and said, "Here they come now!" I still don't know how they managed it, but it made things difficult for the Canadian Scottish Regiment piper, who was going to lead them in, as they just went speeding by. We got that sorted out, however.

There were about fifty people waiting, lots of media types, and two mounties in their scarlet, which added a nice touch to the proceedings. There are a lot of steps down to the water at "Mile 0," and Gary Lunn carried Joey's bike down for him. Then Joey was filmed dipping the wheel into the Pacific. He also filled a jar with water and laughingly asked if anyone would like to drink it. After getting his feet thoroughly wet, he returned up the cliff for the ceremonies.

All the speeches were short and were given by Gary Lunn, Murray Coell, MLA for Saanich and the Islands (my son-in-law's brother-in-law), Frank Leonard, mayor of Saanich, Alderman Young representing the City of Victoria, Steve Orcherton representing premier Clark, and a couple of our members. David Mazoff (squeeky) read a letter to Joey from Jeremy Beaty, National Chairperson of the Hepatitis C Society of Canada.

A number of presentations were made and then the piper gave us a few bars. Two notable absentees were David Anderson, the Federal Fisheries Minister, and somebody by the name of Jean Chrétien, and the only Rocks in evidence were on the beach with the driftwood and other rubbish!!

The Haché family were delighted by their reception, and although I would have liked to have seen more people there, it was Friday afternoon, a difficult time for many. All in all, I think Victoria was a success, but remember the old saying, "He who sits on his Laurels gets a sore behind!"

In conclusion, I would like to express my personal thanks to everyone from coast to coast who contributed to the success of Joey's trip.

If you'd like to send Joey a card or note of appreciation, his address is the following:

Joey Haché

434 Sujack Street

Rusel, ON K4R 1G2

Very best wishes to all of you,

Ron Thiel, Saanichton (Victoria)

PS: Pictures of Joey's arrival can be found on our website at: http://www.pacificcoast.net/~hepcvic/hepcvic~1.htm

IBUPROFEN WARNING

Dr. Riley has an article in the September issue of the American Journal of Gastroenterology.

aged 70, of Surrey, BC, passed away on August 4th of liver cancer. She is fondly remembered by her husband Alfred, her daughters, Cheryl O'Donnell and Karen Becker and her grandchildren, Justin and Seamus O'Donnell and Harlan Hudson.

Her passing has not gone without notice.

His family requests donations to HeCSC Victoria or the charity of your choice.

DISCLAIMER: Neither HeCSC nor the hepc.bull can endorse any physician, product or treatment. Any guests invited to our groups to speak, do so to add to our information only. What they say should not necessarily be considered medical advice, unless they are medical doctors. The information you receive may help you make an informed decision. Please consult with your health practitioner before considering any therapy or therapy protocol. The opinions expressed in this newsletter are not necessarily those of the organisation.

COMING UP

Castlegar/Grand Forks/Trail Contact: Robin, 365-6137.

Cowichan Valley Hepatitis C Support Services. Meetings: 1st Thursday 7-9 PM. 3rd Tuesday 10-12:00 noon,. 464 TCH. Duncan. NEXT MEETINGS: Oct. 1st and 20th. Contact: Debbie, 748-5450 or Leah 748-3432. vhepc@hotmail.com

Enderby HepCURE Meetings: Last Sunday of each month 2-4 PM, for High Tea, The Raven Gallery, 701 George St. NEXT MEETING: Oct. 25th. Contact: Marjorie, 558-7488. www.junction.net/hepcure/index.html

Kelowna HeCSC Meetings: Last Saturday of each month, 1-3 PM, Rose Avenue Education Room in Kelowna General Hospital. NEXT MEETING: Oct. 31st. Contact: Michael, 860-8178 or eriseley@bcinternet.com

Nanaimo HeCSC Meetings: Second Thursday of each month, 7 PM, Health Unit-Central Vancouver Island, 1665 Grant St. NEXT MEETING: Oct. 8th. Contact: Helen, 245-8759.

Parksville/Qualicum 163 Memorial Street, Parksville. Open daily from 9AM to 4 PM, M-F. Contact: (250) 248-5551. dbamford@island.net

Penticton HeCSC Meetings: Third Thursday of each month, 7-9 PM, Penticton Health Unit, Board rooms. NEXT MEETING: Oct. 15th. Contact: Leslie, 490-9054, bchepc@bc.sympatico.ca

Richmond: Meetings: Fourth Tuesday of each month from 7 to 9 PM, Westminster Health Unit, 7000 Westminster Hwy., main floor, room 3. NEXT MEETING: Oct. 27th. Contact: Guy, 244-1704. guy@fatherswithoutchildren.com or Carmel at Richmond Health Unit, 279-4069.

Sunshine Coast Meetings: First Thursday of each month, 7:30 PM, Coast Garibaldi Health Unit in Gibsons. NEXT MEETING: Oct. 1st. Contact: Karen, 885-6413. karen_felske@sunshine.net

Vancouver CLF Meetings: Second Thursday of each month, 7:30 PM, Nurses' Residence of VGH (12th and Heather). Signs will direct you. NEXT MEETING: Oct. 8th. Contact: the CLF, 681-4588 or Herb, 241-7766. HMoeller@compuserve.com

Vernon HepCURE Meetings: 1st Tuesday 12-2 PM and 3rd Tuesday of each month, 6-8 PM, the People Place, 3402-27th Ave. NEXT MEETINGS: Oct. 6th and 20th. Contact: Marjorie, 558-7488. www.junction.net/hepcure/index.html

Vernon HEPLIFE Meetings: 2nd and 4th Wednesday of each month, 10 AM-1 PM, The People Place, 3402-27th Ave. NEXT MEETINGS: Oct. 14th and 28th. Contact: Sharon, 542-3092. sgeegee@msn.com

Victoria HeCSC Meetings: Last Wednesday of each month, 1-3 PM, and again at 7-9 PM, St. John the Divine Church Lounge, 1611 Quadra St. (Entrance through the rear, marked Annex) NEXT MEETING: Oct. 28th. Contact: 388-4311. hepcvic@pacificcoast.net

HOW TO REACH US

1321 Finlayson Street

Victoria, B.C. V8T 2V5

Fax: 250-383-4310

Phone: 250-353-3201

or 727-6022

E-Mail: natura@islandnet.com

Website: www.vicsurf.com.natura

Yesterday, I read on the email that Daniel on the HEPV list had passed away. Only thirty-eight! We had been expecting it since he had gone into liver failure about a month ago. Last Month, Jim Thompson; a few weeks ago Annie Yeo passed away, and this week Michael Spence departed.

Yesterday as well, Mrs. Spence called me and we spoke at some length. Friends had left donations in memory of Mr. Spence to HeCSC Victoria, and she wanted to know if this money would be going to research. I told her that it could...I guess?...I mean it should...I guess?... and finally that it would!...(but how?...)

Where would it go? How much did we need? Where would we get it? And would it make a difference? Just thinking about how much money is needed to conduct research into a cure for HCV and then looking at our bank account seems an exercise in futility designed only to put me back to bed. How depressing!

But good things start small. They start with a question by a loving wife. They start with the concerns of specialists like Dr. Martin Schechter and Robyn Sussel of the CTN whose willingness to include HCV in their mandate for HIV research is a gesture that leaves us flabbergasted. They start with the dedication of people such as Joan King and Darlene Morrow, who despite their daily battles with the dragon find time to advocate for all of us, and to come up with strategies and ideas that will hopefully benefit us all as new treatments and even a cure is found. They start with the willingness of Tim McClemont and Hardeep Kaur of the national office of HeCSC to venture into new ground, to spend even more hours in an understaffed office trying to tackle an almost insurmountable problem, and with no guarantees-except frustration.

Almost insurmountable, because 10 years ago those with HIV-AIDS faced the same unwillingness of governments to deal with and respond to the very real problems posed by that deadly illness. But they persisted and fought on, pushing the government at all levels to respond with federal and provincial strategies for research, support and education.

Now it is our turn. It is our turn to remind our governments and fellow Canadians that hepatitis C is not merely a "persistent nuisance" experienced by a minority of persons of questionable character, but a chronic and progressive disease, which, if untreated, will in many cases lead to suffering, disability and death. It will also have severe fiscal repercussions as the costs from lost earnings, sick leave, unemployment insurance, welfare benefits, medical treatment for complications and treatment with ineffective and costly drugs begin to add up.

So, Mrs. Spence, I want to thank you and to tell you that we are opening a special bank account, which we shall call the Michael Spence Account (with your permission), and that all donations to the chapter for research shall be placed there. It is a beginning,

Let it grow.

Statements like "5% to 20% die from Hep C" and "5% die within 3 to 5 years of contracting the disease" are quite influential to anyone's decision making. There are literally dozens of claims about imminent death. Occasionally we take higher USA numbers and apply them directly to Canada due to a lack of genuine Canadian based studies and research. This perceived epidemic threat has little basis in Canadian funded research.

Apparently some creativity is allowed in this area when seeking federal funding, as well. Medical science now claims that all reasons for liver failure collectively equal the fourth leading cause of death in Canada. This has little to do directly with Hep C, although it seems to regularly appear in discussions related to Hep C.

Canada, like many developed countries, uses a system called the International Classification of Diseases, or ICD code, to officially record its death statistics. The information, recorded at the time of death, is categorised by one or more causes locally, then sent to Ottawa to compile official national numbers.

Here in the province of BC or in Canada, we do not have the death percentages previously stated above. In fact the actual number of hepatitis C attributed deaths are a small fraction compared to those stated above. There are many reasons for these distorted numbers; however, these numbers are the only official death statistics for Canada. The primary reason for liver failure has been, and still is, alcohol. To cross check and validate these death statistics, the next step is to verify how many livers are actually failing and require transplants to prevent imminent death. It was very surprising to learn that 99% of Canadians on the organ transplant waiting list are NOT waiting for new livers. This should be a reliable indicator of pre-imminent death, partially related to hepatitis C.

The general public does not have a desire to dwell on morbid subjects like death. However patients considering radical drug therapy should have genuine facts at hand to reach their decisions, not inflated hearsay. This is particularly true for the asymptomatic patient, who may acquire new problems with drug therapy alone. Patients in the end-stages must face grim circumstances and make tough decisions that affect both them and their families. There is no one person more qualified or willing to take on that responsibility than the patient.

The actual scientific cause of any death is not easily arrived at. This is for economic, scientific and reasons of general practicability. Blood screen tests are not reliable on the deceased. An autopsy is not performed without somebody paying the costs. Physical degradation in the liver related to hepatitis is a function that is assessed in an autopsy. Given input from the family or a doctor is the only time a cause of death would be attributed to Hep C and applied to the appropriate ICD category. A liver section analysis would solve this with more accurate data as it applies directly to Canada.

These ICD codes are not exact, but they are official to our government. If the numbers are higher, then surely people in the end stages deserve better information from the Ministry of Health, not from parties with a vested interest. Inflated numbers may have the effect of delaying any decision by the ministry to formulate a planned policy and begin effective treatments now.

If the Ministry of Health responds to a finite number of patients who want genuine life-saving treatment, it may be more manageable with our public medical system than trying to formulate one plan for a statistical mystery group. As the taxpaying financiers of the public medical system, we have some community responsibility to keep costs realistic.

Our government may not be able to afford blood screen tests for 96 viruses for the entire population of Canada under our present system. Our government may have difficulty in financing the costs of sterilising disposable medical equipment under ISO guidelines. It does have the power, however, to treat actual reported cases of chronic hepatitis patients who wish to be treated. These patients deserve facts to make an intelligent and dignified decision about their own futures.

In closing, we should all be aware that the health of the ministry is inversely proportional to the health of the medical community. Both parties must bear in mind who finances the system and who bears the human and economic cost of those decisions.

Sources available on request.

It is easy to play the numbers game. And while we agree that scare tactics are not good for anyone, we do not think that Mr. Milner gives us an accurate picture either.

If we accept the current two-percent of the population infected with HCV theory, then there are at least 300,000 people infected with HCV in Canada. While only 20 percent of these people will go on to develop cirrhosis (60,000), this is still a significant number. From that 60,000, five percent will go on to develop liver cancer (3,000). Liver cancer ultimately ends in death. The remaining 57,000 may go on to develop end stage liver disease, and a percentage of those people will require a liver transplant. Twenty-five percent of those people that receive a liver transplant will die.

Furthermore, the above paragraph deals with percentages calculated from old data. Remember that HCV has only been actively studied since 1989. We think that 20 percent of those people will develop cirrhosis, but, in fact, that number could be higher. We also believe that only five percent will go on to develop liver cancer, and I fear that this percentage may also be much higher.

In addition, comparing liver transplant numbers with other organ transplants is futile. What difference does it make how many people need kidney transplants? The fact is that people still die waiting for a compatible liver.

Mr. Milner is correct in saying that there is no current ICD code for HCV. But rather than overstating the deaths from hepatitis C, I believe that deaths are severely under-reported. The people that die from liver cancer which they got because of the increased risk due to cirrhosis, which they got because of HCV-is only attributed to liver cancer. In fact, HCV is the cause. What other diseases associated with HCV could be responsible for death? We just don't know, but I assure you there will be others.

While I agree that our health-care system is in jeopardy, without an increase in research funding to HCV, it will only get worse. Many people who are sick with HCV are no longer able to work. These people don't pay income tax and do not have extra money to spend-so no provincial tax and no GST. Furthermore, it is not uncommon for people to use up all of their savings and end up on welfare. These sick people can no longer contribute to the system and now can only take the meagre amount that is doled out to them, and you can bet that none of these people want to be there.

So with some foresight, it is possible for the government to increase funding for research into hepatitis C and avoid the above scenario by facilitating both the discovery of a cure for HCV and a vaccine to prevent the spread of this terrible disease.

CUPID'S CORNER

This column is a response to requests for a personal classified section in our news bulletin. Here is how it works:

To place an ad: Write it up! Max. 50 words. Deadline is the 15th of each month and the ad will run for two months. We'd like a $10 donation, if you can afford it. Send checks payable to HeCSC Victoria Chapter, and mail to HeCSC, Attn. Squeeky, 1611 Quadra St., Victoria, BC V8W 2L5. Give us your name, tel. no., and address.

To respond to an ad: Place your written response in a separate, sealed envelope with nothing on it but the number from the top left corner of the ad to which you are responding. Put that envelope inside a second one, along with your check for a donation of $2, if you can afford it. Mail to the same address as above.