hheeppcc..bbuullll Canada’s Hepatitis C News Bulletin www.hepcbc.ca

HEP C NEWS AYN’S STORY SEQUEL: ROUND TWO! ABOUT TIME!! I was originally diagnosed in 2007. I [Editor: Roseen’s first article appeared this year took Pegasys for 48 weeks and thought I in our April edition.] There is no doubt that tattoos are becoming was cured until I went for a test last De- Week 8 Happy Dance!!! I was pretty excited more popular, but lately the US FDA had to cember and got a positive result. It took issue a warning because skin infections have to learn that my week 8 blood work stated until August before I could see a specialist, that the Hep C virus was undetectable. While been occurring after people have gotten tat- and until now to get the result of those on treatment previously, with Pegasys, I still tooed. The infections have occurred in Iowa, tests. I am going to the specialist at the had the virus at 12 weeks, so I'm very hope- Colorado and New York, among others, and clinic tomorrow. ful with the progress I'm making on Victrelis. have been associated with nontuberculous I'm nearing the end of week 12 and I'm I'm finding the health care in my area counting down—only 36 more weeks to go. mycobacteria. Such infections can be mild, leaves a lot to be desired and, as usual, one but in some cases, can cause abscesses requir- It has been a bit of a rough ride lately with has to be proactive in one’s own health the side effects and the doctor has prescribed ing surgery. Apparently the ink was contami- care. I was in need of the Hep A vaccine Eprex for the anemia and that is starting to nated when the manufacturer diluted dark ink and was told I'd have to pay $58.00, but help. Also, the doctor added Vit B12, Ferrous with water. The tainted ink has been recalled, upon further investigation, I was able to Gluconate, and Folic Acid into my daily pill and some experts have been discussing the regimen to help the Eprex do its job. There is get it from public health, for free. There also something to help with diarrhea. Now, if need for more regulation for tattoo-related were several places where I inquired (like businesses. The tattoo parlours themselves only I could get some relief from dry mouth, the methadone clinic.) The people there feeling nauseated, and some vomiting . may dilute the ink to produce shading, una- should have told me to go to public health I've had changes in taste and smell so some ware of the dangers. Only sterile water should but instead, everybody said I'd have to pay of my old remedies don't work this time. I be used. for it. I'm afraid that I've fallen through the find sipping on orange juice helps to stimu- Dr. Drage, assistant professor of dermatolo- cracks. late salvia. Chewing gum is no longer an option because it just tastes terrible. I still gy at the Mayo Clinic, says, "There are some My specialist in my hometown told me people who would say there's no such thing as get some relief from peppermint tea and can- that I'd never have to get tested for HCV died ginger for nausea. I'm looking for an a safe tattoo currently because of the lack of ever again, and that I was cured. It’s a unscented laundry detergent as all scents oversight." good thing I insisted on a test last year, and bother me and don't smell like they used to. Clients are also at risk for staph infections that is how I discovered the virus has re- I've read a lot of novels these days and or even infections from MRSA, a dangerous turned. I will find out more tomorrow and watched TV where I never would before. I have enjoyed Canada's Got Talent and the superbug. Infections can happen if the work will get a copy of the results from those surface has been contaminated or the artist Big Bang Theory lately. I would never have tests. I know that I am genotype 1. I'm not bothered to watch beyond the news hour doesn’t use disposable gloves. Gloves should sure what stage I'm in, but when I had my very often, but it is pretty much a daily rou- be changed if the artists touch their face or biopsy in 2008 before my Pegasys treat- tine. I do miss being active, but know I will any other surface that can have germs. And of (Continued on page 3) be again in about 40 weeks! course, if the needles aren’t clean, tattoos can I've had to cut back on working and am spread HCV or other blood-borne diseases. considering not working at all until I'm fin- Many tattoo artists work from their homes, INSIDE THIS ISSUE: ished treatment. The week 8 results are very, and are never inspected. very encouraging and make all the side ef- fects worth putting up with. Knowing that Toronto Public Health is developing a sys- Hep C News 1 the side effects will disappear very quickly tem which would require nail salons, piercing 1 when I am finished treatment, also helps me studios and tattoo artists to be inspected and Ayn’s Story / Sequel: Round Two! to keep going. licensed and to post the results of the inspec- Support Group Tips 3 I wish those of you on the tion for customers to see. The agents there say Victrelis treatment the very that yearly inspections are not sufficient. Thanksgiving Weekend 4 best. I hope your progress is as positive as mine and that you Source: www.theglobeandmail.com/life/health- HepCBC Liver Warrior News 5 will find this motivates you to and-fitness/health/experts-want-more-oversight-of- keep going to the end. Hep C on the Internet 6 tattoo-industry/article4524081/?cmpid=rss1 Sep 6, 2012 MerckCARE/PegAssist/Neupogen/ 7 Roseen in Southern Ontario (Hep C News continued bottom of page 3) Coming Up 8

HEPC.BULL NOVEMBER 2012 ISSUE NO. 160 Page 1 SUBSCRIPTION/ORDER FORM CUPID’S CORNER NEW!! FAQ version 9.0 Please fill out & include a cheque made out to HepCBC - Send to our NEW address: his column is a response to requests for a Peppermint Patti’s FAQ personal classified section in our news bul- HepCBC T Version 9.0 is NOW letin. Here is how it works: 2642 Quadra Street AVAILABLE, Version 8 is To place an ad, write it up! Max. 50 words. PO Box 46009 available in FRENCH and Deadline is the 15th of each month and the ad Victoria, BC V8T 5G7 SPANISH. The ENGLISH will run for two months. We'd like a $10 dona-

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Membership Only ……………………..$10.00 Franciscus, and all of HepCBC’s pam- be held responsible for any interaction between par- (Doesn’t include the hepc.bull) phlets. The Resource CD costs $10 includ- ties brought about by this column. ing S&H. Please send cheque or money Subscription Only …………………..…$10.00 (Doesn’t include membership privileges) order to the address on the subscription/ order form: www.hepcbc.ca/orderform.htm AD 30 Peppermint Patti’s FAQ ……………….$15.00 DISCLAIMER: The hepc.bull© cannot endorse any physician, product Youthful, early 50's single Caucasian Resource CD ……………………...…...$10.00 or treatment. Any guests invited to our groups to speak, do so to add to our information only. What they say should not necessarily be considered male. 5'11", 200 lb non-smoker, out- “I enclose a donation of …………….$______medical advice, unless they are medical doctors. The information you receive may help you make an informed decision. Please consult with doors, nature walks, camera, musical, so that others may receive the bulletin.” your health practitioner before considering any therapy or therapy protocol. The opinions expressed in this newsletter are not necessarily science educ. Half life on hold since diag- TOTAL: ______those of the editors, of HepCBC or of any other group. nosed. Time to break-out.

“I cannot afford to subscribe at this time, but I Searching intelligent, young at heart would like to receive the bulletin.” REPRINTS Past articles are available at a low cost in hard woman to share some time, hobbies, ac- “I want to volunteer. Please contact me.” copy and on CD ROM. For a list of articles and tivities, friendship leading to...? Maybe prices, write to [email protected] . “I want to join a support group. Please call.” just friends, maybe a family. Life rarely turns out as you wish or imagine. (Note: The hepc.bull is mailed with no reference to hepatitis on the envelope.) Tell me about yourself—hobbies, website, You may also subscribe or donate on line via photo? PayPal at www.hepcbc.ca/orderform.htm HepCBC thanks the following institutions and individuals for their generosity: The late John Crooks, The SUBMISSIONS: The deadline for any Ocean, JackFM, Community Living J. Lemmon contributions to the hepc.bull© is the 15th of each [email protected] month. Please contact the editors at Victoria, Victoria Positive Living Centre, [email protected], (250) 595-3892. The editors Provincial Employees Community Services Experienced in medical and legal research reserve the right to edit and cut articles in the Assistance with HCV compensation claims interest of space. Fund, United Way, the Victoria Foundation, Dr. C. D. Mazoff, Lorie FitzGerald, Chris and appeals ADVERTISING: The deadline for placing High success rate / Low payment rate advertisements in the hepc.bull is the 12th of each Foster, Judith Fry, Allison Crowe, United month. Rates are as follows: Way, and the newsletter team: Beverly References are available

Newsletter Ads: Maximum 4 per issue, if space Atlas, Diana Ludgate, Alp, Judy Klassen, allows. $20 for business card size ad, per issue. Cheryl, Anamaria, S. J and L.P. Payments will be refunded if the ad is not published. Please patronize the following businesses HOW TO REACH US: that have helped us: Top Shelf Bookkeeping, Thrifty Foods, Samuel’s EDITOR: Joan King Restaurant, 2 Guys & A Press, Merck PHONE: (250) 595-3892 Canada, Roche Canada, Vertex, Gilead, FAX: (250) 595-3865 Janssen, VanCity, Shoppers Drug Mart, EMAIL: [email protected] WEBSITE: www.hepcbc.ca Market on Yates, Country Grocer, and HepCBC Safeway. 2642 Quadra Street, PO Box 46009 Special thanks to Thrifty Foods for Victoria, BC V8T 5G7 putting our donation tins at their tills in TIP OF THE MONTH:

these stores: Greater Victoria: Quadra, LETTERS TO THE EDITOR: Cloverdale, Hillside Mall, Tuscany, KEEP COPIES OF ALL The hepc.bull welcomes and encourages Broadmead, Fairfield, James Bay, Admirals YOUR TESTS letters to the editor. When writing to us, Walk, Colwood, Central Saanich, and please let us know if you do not want your Sidney. Lower Mainland: Tsawwassen, and know what they mean letter and/or name to appear in the bulletin. Coquitlam, Port Moody. Also: Salt Spring and Mill Bay.

Page 2 HEPC.BULL NOVEMBER 2012 ISSUE NO. 160 (AYN’S STORY—Continued from page 1) Allison Crowe's SUPPORT GROUP TIPS Annual Christmas ment, I was in stage 1. I think my liver is in- flamed, and whenever I have a glass of wine I Benefit for HepCBC get a sore side, so needless to say, I have vir- I am an HCV+ peer volunteer, and must Sat., Dec 1, 2012 tually quit drinking. That being said, it is dif- admit our group is not the greatest at all 7:00pm ficult to go out socially and not drink, so I times (attendance has varied between 2 and Fairfield United find myself having "one" glass of wine or a 25!), so don't feel so bad about yours if it isn’t an instant success. Here are a few Church drink every once in a while. I did quit drink- ing entirely the last time I was in treatment, humble suggestions. Though I am a retired In her annual concert benefitting so I know I can do it, but find myself avoid- teacher of adults, I have found there are HepCBC and Artemis Place (life skills and ing social situations for this reason. very few parallels with my previous teach- academics for at-risk girls), Allison Crowe I am very troubled by my boyfriend’s reac- ing; expect peer support to be worlds apart cooks up an organic blend of rock, , folk, tion to my infection. He treats me like a leper from a classroom! The best advice I ever got about peer gospel and soul. Favourites It Came Upon a since we found out the virus has returned. His support groups was from a friend, Gordon Midnight Clear, In the Bleak Midwinter, family is treating me differently, and just last McClure of Kamloops, who died recently. What Child Is This, The First Noel, Silent week he said my Hep C infection was like Night, and O Holy Night are performed with He had taken leadership of the group when "the elephant in the room" and that the infec- its leader, Sharon Grant, died. Even if he rare artistry and passion alongside the mod- tion was "my fault" because of the lifestyle was the only person there, he stressed to ern canon of , , choices I made 40 years ago. He blames me me it was important not to get discouraged. Lennon & McCartney and original song se- and makes me feel as though it is my own People notice constancy and commitment lections (including the elegiac "Arthur", and fault that I am sick. This man is 69 years of over time. His group is still operating as the epic, foot-stomping, "Disease"). age and from "the old school." He won't touch far as I know, even though he's gone. And "Allison Crowe is a stunningly talented me sexually, and we have had virtually no he took it over immediately after the performer. Her voice celebrates the music contact since last February when I discovered founder of it died. with a bluesy rock-gospel intensity; her con- the virus was back. He won't even use the One thing I've discovered is that it's good trolled vibrato, silken rasp, and powerful same tube of toothpaste as me, and I feel to have guest speakers frequently, even if projection rivet your attention. This is no more and more like a second class citizen they're simply HCV+ peers visiting from casual background music... be prepared to be every day. another town. Actually, we should all try amazed." ~ ChristmasReviews.com We have been together for 6 years, and I to stop in and visit one another's groups http://music.allisoncrowe.com/album/tidings have tried to educate him about the virus, but when we can, I think. This involves keep- ing in close touch about the times and plac- Peace on Earth ~ Goodwill toward All. he still thinks it’s my fault and treats me badly es, what/where/when groups are availa- Featuring: special guests TBA Tickets avail- at times. I have tried to distance myself from ble. Joan tries to do this via the last page able online now: him, but all my friends are his friends, and I of the hepc.bull. www.allisoncrowe.com/shoptickets.html feel even more isolated when we are not to- gether. Don't get me wrong. Even though he Flexibility is key. Always have a backup seems anal and controlling, there are a lot of plan B, but be ready to tailor the topic of good times, and when he is not giving me the group to what the immediate needs of the group are, particularly any new mem- s*** for having HCV, he can be a lot of fun to (HEP C NEWS—Continued from page 1) bers. Bring pamphlets and develop a be around, and we do share a lot of laughs. I CONVENIENCE ‘library' of books to be signed out. (Before will be able to expand on my story more setting these books out, you need to devel- In a recent clinical trial combining ABT- when I have been to the doctor, and have the op a good method of keeping track of the 450, ABT-267, and ABT-333 plus RBV test results. books and communicate it to all the mem- (Ribavirin) 76 out of 77 patients had an SVR12 —— bers.) (undetectable virus 12 weeks after completing Update: Guess what! I just left the doctor, Having 2 or 3 trained peer co-facilitators is treatment). More astounding were the 38 out of and he said that all my tests were negative, very important. We all trained via a program 41 null-responders testing undetectable 12 the ultrasound was normal, and there is no developed by Victoria's 24/7 phone support weeks post-treatment. (Some data is missing trace of virus. I had another blood test done line. (Their line is no longer operating, and could change the rates a bit.) just to be sure. I'll get the results in two unfortunately.) One person in charge at a Ideally patients would take just one pill a weeks. He said that it was not uncommon to particular group is ok, as long as there are day, but one pill must be taken twice a day, get a "false positive" and blamed the lab. one or two others present to back them up, and the other, once a day. Gilead has a two- Wish me luck as I wait for the results of to- and to take turns with facilitating the next pill combo (GS-7977 and GS-5885). Luckily, day's test! I'm in shock... All the reading... time. Hep C patients only take their drugs for a Support grSoups... Stress and anguish... But Keeping in touch between meetings is few months, unlike HIV patients, who must this is good news. really important, and something we never take them for the remainder of their lives. —Ayn Styles seem to do enough of. Enduring ties among Doctors will likely suggest the most effec- [Editor’s note: We Hep- peer members, and loyalties to the group tive drug, as long as it is safe. Convenience C’ers usually need both are built that way. will be an important factor when the cure and Hep A & B vaccines Confidentiality is very key. It’s good to safety rates are equally good. unless we have already mention it at the start of each meeting. GOOD LUCK!! Source: had one or both of www.fool.com/investing/general/2012/10/15/a-hep those infections.] —An HCV+ peer volunteer. -c-hip-check.aspx

HEPC.BULL NOVEMBER 2012 ISSUE NO. 160 Page 3 HEP C CLINIC AT THANKSGIVING PERCURO WEEKEND VICTORIA, BC October 5-7, 2012 – Victoria, BC Report by Anita York

Did you know that the Hepatology Clin- Here is a quick rundown from my side of SUNDAY 9:00 AM. The sun is warming up ic at PerCuro provides comprehensive HCV the Marathon Weekend. our weary bones. The faces are happier now education and long-term support to patients and noticing our cheering signs. It’s time to FRIDAY 10:45 AM start. Time to load up and their families undergoing HCV treat- dance to the music, cheer loudly and chat up Stephen’s truck with HepCBC booth supplies ment in the Greater Victoria/Southern Van- the weary trekkers as they pass by. Our sta- couver Island region? for the Expo site Conference centre. tion’s population and noise level increases Specialized nurses assist with the pro- SATURDAY 9:00 AM start. All day Satur- with Joanne, Karen and her two daughters, curement of financial coverage for treat- day we (Theresa, Steve, Caitlin, Cheryl, and John and Jenny, and others. ment, ensure lab tests are scheduled appro- I) wore a plenitude of hats. Operating our Karen & daughter cheered us all on! priately, provide instruction in the self- HepCBC booth, photo shoots, and operating administration of injectable medication, the Good Life Marathon booth. Finishing the assist with the management of side ef- day off with a high-carb dinner at Cheryl’s fects, facilitate a monthly support group, house. and liaise with family doctors and special- ists regarding the patient’s HCV status, treatment and any other issues of concern.

This type of professional support is im- perative now that standard of care therapy often involves three medications. PerCuro also offers access to cutting edge clinical trials for both naïve and treat- ment-experienced patients. Every attempt is made to meet the indi- vidual needs of all patients. There is no cost involved. Clockwise from upper left: Cheryl, Nursing Support improves outcomes. Ethan, Anita, and Theresa Contact 250-382-6270 Some of our signs made people laugh: SUNDAY 6:55 AM start. It is still dark, cold, and breezy when Theresa and I arrive at THE END IS NEAR our cheering station along the waterfront. We I THOUGHT YOU SAID ‘TELETHON’ are definitely shivering as we set up our cheering signs. RUN LIKE YOU STOLE SOMETHING

Theresa and Anita at Cheering Station COME VISIT SUNDAY 11:30 AM. It’s time to hike back to the Expo site and dismantle our booth. Hats OUR off to everyone, the Marathoners, the people RE-DESIGNED front and behind the scenes and everyone in- volved in making this a great success for WEBSITE!! HepCBC and the Liver Warriors in the Good HEPCBC.CA Life Victoria Marathon 2012. See you next year!

Cheryl & Rosemary passed FINISH line!

YOGA AT AVI,

VICTORIA The marathoners are starting to come by. Some are briskly walking, some are lightly Ahhh! A laid back, jogging, and some are in a full-bore run. gentle class for people There are happy smiling faces, deep concen- who have chronic health conditions. Every tration faces, and some wearing their just Tuesday, 10:30 am at Bayanihan Hall, having fun faces as they flow past our Liver 1709 Blanshard St., Victoria, BC. Warriors cheering station. There are mara- Julia Breese is returning to teach us. thoners in no shirts, 3 piece suits, logo shirts, (http://garudayoga.ca/) Wheelchair long pants, short pants, serious runner’s out- accessible. Free. More info: 250-384- fits and outfits consisting of whatever was 2366 ext 2270 close by when they woke up in the wee hours of Sunday.

Page 4 HEPC.BULL NOVEMBER 2012 ISSUE NO. 160 HepCBC LIVER WARRIOR One cheering volunteer, Pilar Rodriquez- (or more) new Liver Warriors will join you Gomez, gave a spirited interview to CHEK in the full marathon in 2013! (At least four NEWS News. Muchas Gracias, Pilar and everyone people must be registered in a particular else! category to be a competitive team as the Good Life Victoria Marathon WHAT SORTS OF PEOPLE JOINED best 4 times are used to compute team October 5-7, 2012 – Victoria, BC standings). Report from C. Reitz THE TEAM?

Focused on fighting their common ene- HOW MANY JOINED, AND WHY? my, hepatitis C, the Liver Warriors came to Twenty-three people signed up to run (or Victoria from BC, Florida, and Oregon; walk) the October 7, 2012 GoodLife Fitness among them were those both with and with- Victoria Marathon with the HepCBC Liver out HCV; men and women from their early Warrior Team in its first year as a Charity twenties through mid-sixties; university Pledge Program member, and every person students, several nurses, social workers, and successfully completed his/her chosen race! teachers, an accountant, a 3D digital anima- Sarah Sullivan, HepCBC The team's three goals were to fight stigma Liver Warriors Team’s tor, a civil servant, and a small business 2012 Marathon Runner! against those with hepatitis C, to publicize the owner. The Warriors included a large group benefits of exercise such as walking for those wanting to support Daisy, who received a MOTHER-SON PAIR WALKS & RUNS: with liver disease, and to raise funds to help liver transplant 18 years ago and is now Cheryl walked the 21 k for a second year HepCBC continue its vital education, preven- facing a health crisis. This group included in a row (4 hours, 40 minutes). She is 64, tion, and support programs. In 2011, the first two of Daisy's daughters, a mother-daughter has cirrhosis, and is currently in Week 16 of HepCBC Liver Warriors team had only 2 pair, cousins, and other long-time friends a 24-week clinical trial (non-interferon, non- members and didn't raise any money. What a and relatives who love Daisy. Another Liver ribavirin). Her son, age 40, ran 21 k in 2 difference a year makes! Warrior, Steve Farmer, in his mid-fifties, a hours, 11 minutes. They're both pretty

liver transplant recipient, and several-time pleased Cheryl felt well enough to do this contestant in the All-Canada Transplant on treatment. She says distance walking, a Games, completed the half marathon in 2 gentle form of aerobic exercise, is a big part hours, 56 minutes! A husband-wife team of her regular personal health regimen be- was celebrating the husband's recent suc- cause it seems to help her liver digest fats, cessful cure through the newly-approved remove toxins, and regulate her blood sugar "triple therapy" HCV regime. levels. Plus, the regular exercise strengthens her entire circulatory system so the HCV treatment drugs can travel easily throughout her body. She plans to continue distance Steve at Info walking regularly every month over the Booth ... coming year so these positive effects won't wear off, and "special training" for the 2013 marathon won't be necessary. Also, to keep her joints flexible, and ...and on the help prevent the wasting of muscle and bone Half-Marathon that so often strikes HCV+ men and women, route, October Cheryl will continue regular weight-bearing 7, 2012 exercise through everyday tasks such as Clockwise from upper left: carrying grocery bags home (without hunch- Rosemary, Steve, Wally & Haixia ing over!), digging and stooping in the gar-

den, grinding whole grains by hand, and WHAT DID THE Here are a few other 2012 Liver Warriors: kneading bread. Finally, she says that exer- LIVER WARRIORS DO? SOLITARY RUNNER OF FULL cise of any sort helps to raise her spirits and MARATHON : The Liver Warriors team and volunteers ‘de-fog’ her brain. managed to place 19th in the Half Marathon, Sarah Sullivan, the only 2012 team man a hepatitis C information booth at the member to run the full (42 k) marathon, is a Cheryl and Ethan before race marathon's EXPO for 3 days (reaching many Registered Social Worker and Manager of of the 11,500 marathon participants), and the Courtenay and Campbell River offices raised almost $7800 to help HepCBC. Merck of AIDS Vancouver Island. She has been Pharmaceuticals helped sponsor the event, but running for five years and when she heard the Warriors themselves raised a significant that HepCBC was sponsoring a fundraising portion of the total by inspiring their friends team for the Victoria Marathon, she jumped and relatives to donate generously to their on board. Sarah says goals are a great train- cause. Besides participating on the team itself, ing motivator for her! Plus, the cause is near another dozen or so Liver Warrior volunteers and dear to her heart as she works with manned the EXPO booth, screamed wildly in many folks living with Hep C, and one of our enthusiastic Charity Cheering Station her best friends is a Hep C and two-time along the ocean side of Dallas Road, and bil- liver transplant survivor. Thanks, Sarah, for Rosemary and Cheryl run leted out-of-town volunteers and runners. all your positive energy! Hopefully three by Cheering Station

HEPC.BULL NOVEMBER 2012 ISSUE NO. 160 Page 5 PHYSICIANS FOR PATIENTS

hepatitiscresearchandnewsupdates.blogspot.ca/

Hep C, the Silent Killer

http://www.facebook.com/pages/Victoria- BC/HepCBC/274985724940 An online physician-mediated support group for patients, families, and friends of those with hepatitis C.

http://hepatitisc.physiciansforpatients.com/

If you are receiving this newslet- ter by snail mail but have internet access, please consider switching to our pdf version. All you need is Adobe Acrobat Reader, free at this www.pacifichepc.org site: www.adobe.com/products/acrobat/readstep2.html Transplant Just send your email address to Support Group of [email protected] and say, “Send me British Columbia the email version, please,” and you, You can join the Facebook too, can enjoy this newsletter in glo- www.hcvadvocate.org group by putting "Transplant rious colour, free of charge. PRE-PLANNING YOUR Support Group of British Colum- bia" in your browser or by using this URL: FINAL ARRANGEMENTS? www.facebook.com/group.php?gid=311699175404&ref=share Please consider arranging for donations to your local hepatitis C organization.

COLUMBIA GASTROENTEROLOGY New Westminster, B.C. 604-525-0155

ADVERSE EVENTS

Report problems with medical products, GLOBAL product use errors, quality problems and HEPATITIS C serious adverse events. www.accessdata.fda.gov/scripts/medwatch/medwatch- NETWORK IN online.htm CANADA

COMPETITION! www.globalhepc.net epCBC needs writers for the “At any age, stay- H hepc.bull, and will pay $50.00 for a ing strong and flexible I have been working on my peer support featured article. The article should be origi- helps you do the Wendy’s Wellness Website and wanted to nal, 500 to 800 words, and be about hepati- things you enjoy, and offer everyone a safe place to get together. tis C. It may be, for example, about the perform day-to-day author’s experience with hepatitis C, a This is the link to my post, offering a activities with great secure place to blog about Hep C health. I study (with references) on some aspect of ease.” Hep C, or a call for action. Submissions hope to connect with anyone interested in th must be in by the 15 of next month, stat- Here, you can find a link to the Move for sharing how we cope and manage our health ing interest in receiving the bonus. If there Life DVD, good eating tips and a series of challenges. is more than one submission chosen, the short “walkabouts,” “energy bursts,” and lots Please pass this along to anyone out editors reserve the right to print both, or of great health tips: www.seniorsbc.ca/ there who would like a safe place to blog. leave one for a future edition. features/move_for_life_dvd.html http://wendyswellness.ca/ [email protected]

Page 6 HEPC.BULL NOVEMBER 2012 ISSUE NO. 160 CONFERENCES MERCK CARETM COMPENSATION

AASLD - The Liver Meeting 2012 TM LAW FIRMS MerckCare is a program to help people 9-11 November 2012 Boston, Massachusetts who have been prescribed PEGETRONTM 1986-1990 www.aasld.org/lm2012/program/Pages/default.aspx VICTRELISTM or VICTRELIS TRIPLETM. Bruce Lemer/Grant Kovacs Norell —— Vancouver, BC The program provides: The 22nd World Congress of the Phone: 1-604-609-6699 Fax: 1-604-609-6688 International Association of Surgeons, ♦ assistance with and/or insurance claims. Pre-1986/ Post-1990 Gastroenterologists and Oncologists ♦ financial assistance for co-pay/ (IASGO 2012) deductible for people who qualify. Klein Lyons ♦ 24/7 nursing support by phone. Vancouver, BC 1-604-874-7171, 5-8 December 2012 Bangkok, Thailand 1-800-468-4466, Fax 1-604-874-7180 ♦ multilingual assistance. www.apaslconference.org/ www.kleinlyons.com/class/settled/hepc/ —— ♦ home delivery of medication. Asian Pacific Digestive Week 2012 Congress Lauzon Belanger S.E.N.C. (Quebec) 8 December 2012 Bangkok, Thailand MerckCareTM provides all of these services Toronto, ON TM Phone 416-362-1989; Fax 416-362-6204 www.apdw2012.org free of charge. To enroll in MerckCare , www.lauzonbelanger.qc.ca/cms/index.php?page=108 —— you can call 1-866-872-5773 or your doctor The 6th Paris Hepatitis Conference (PHC) Roy Elliot or nurse can submit an enrollment form for 14-15 January 2013 Roy Elliott Kim O'Connor LLP. you. Reimbursement Specialists are availa- [email protected] www.reko.ca/html/hepatitisc.html Palais des Congrès de Paris ble from 8:00 a.m. to 8:00 p.m. EST Mon- Paris, France Kolthammer Batchelor & Laidlaw LLP day to Friday, excluding statutory holidays. #208, 11062 – 156 Street, www.colloquium.eu/site/-Homepage,2334- Edmonton, AB T5P-4M8 —— Tel: 780-489-5003 Fax: 780-486-2107 Canadian Digestive Diseases Week (CDDW) [email protected]

and Annual Canadian Association for the Other: Study of the Liver (CASL) Winter Meeting PEGASSIST William Dermody/Dempster, Dermody, Riley & Buntain 1-4 March 2013 Victoria, BC The PegAssist Reimbursement Assis- Hamilton, ON L8N 3Z1 1-905-572-6688 www.cag-acg.org/annual-conference-cddw tance Program provides reimbursement co- —— LOOKBACK/TRACEBACK 23rd Conference APASL (Asia Pacific Assoc. ordination assistance for patients who have been prescribed Pegasys or Pegasys RBV. Canadian Blood Services Lookback/Traceback & Info for the Study of the Liver) Line: 1-888-462-4056 7-10 March 2013 Singapore The program will assist in securing funding for patients to ensure that they can start, stay Lookback Programs, Canada: 1-800-668-2866 www.apaslconference.org/ —— on, and complete their treatment successful- Canadian Blood Services, Vancouver, BC st 1-888-332-5663 (local 3467) or 604-707-3467 21 Annual Conference of Indian National ly. PegAssist Reimbursement Specialists are Association for Study of the Liver available (Monday to Friday, 10 AM - 6 PM Lookback Programs, BC: 1-888-770-4800

22-24 March 2013 EST) by calling: 1-877-PEGASYS or 1-877 Hema-Quebec Lookback/Traceback & Info Line: -734-2797. Patients can also obtain 1-888-666-4362 HICC, Near Hitec City, Hyderabad, India www.inasl.org.in/indexhome.php? a program enrollment form from their nurse/ Manitoba Traceback: 1-866-357-0196

do=menu2&lmid=17 physician to gain access to the program. Canadian Blood Services, Ontario The program provides financial aid to 1-800-701-7803 ext 4480 (Irene) qualified patients, alleviating financial barri- [email protected]

ers which may prevent patients from starting RCMP Blood Probe Task Force TIPS Hotline treatment, i.e., deductibles and/or co- 1-888-530-1111 or 1-905-953-7388 payments. In partnership with CALEA Phar- Mon-Fri 7 AM-10 PM EST macy, the program can conveniently deliver 345 Harry Walker Parkway, South Newmarket, ON L3Y 8P6 Fax: 1-905-953-7747 the medication directly to patients’ homes or to the clinics. CLASS ACTION/ COMPENSATION

NEUPOGEN Class Action Suit Hotline: 1-800-229-5323 ext. 8296 Health Canada Compensation Line: 1-888-780-1111 VICTORY PROGRAM Red Cross Compensation pre-86/post-90 Registra- tion: 1-888-840-5764 [email protected] INCIVEK CARE Amgen has a program for patients who Ontario Compensation: 1-877-222-4977 have been prescribed Neupogen. A reim- Quebec Compensation: 1-888-840-5764 Vertex’s IncivekCare Patient Assistance www.phac-aspc.gc.ca/hepc/comp-indem_e.html bursement assessment is conducted by a Program supports patients with the reim- specialist who will help you navigate bursement process for Incivek (telaprevir) CLAIMS ADMINISTRATOR through your personal or provincial cover- treatment (Incivek, pegIFN, ribavirin). It will 1986-1990 age options. Dependant on specific criteria, give you an efficient assessment of your op- some patients may be able to obtain Administrator 1-877- 434-0944 tions and eligibility. You may qualify to re- Neupogen on a compassionate basis free of www.hepc8690.com [email protected] ceive co-payment and other financial assis- www.hepc8690.ca/PDFs/initialClaims/tran5-e.pdf charge. Please note that Amgen will only tance to supplement your private and provin- provide Neupogen to patients on a compas- Pre-86/Post-90 cial drug program coverage. The program sionate basis as long as it is prescribed Administrator 1-866-334-3361 also provides dispensing and home delivery and dosed in accordance with the ap- [email protected] options, and expert treatment advice. Call the www.pre86post90settlement.ca proved product monograph. This service Support Line at 1-877-574-4298. (Select op- is accessed through the Victory Program: 1- Settlement Agreement: tion 2 for English, then 2 for Incivek Care.) 888-706-4717. http://www.pre86post90settlement.ca/PDFs/SA/ hepc_settleagreement.pdf

HEPC.BULL NOVEMBER 2012 ISSUE NO. 160 Page 7

SUPPORT BC/YUKON OTHER PROVINCES Armstrong HepCURE Phone support 1-888-437- treatment and living well with hepatitis C. ONTARIO: www.publichealthgreybruce.on.c 2873 Contact Laura 1-800-421-2437, 250-505- a/ Barrie Hepatitis Support Con- 5506, [email protected] AIDS Vancouver Island The following groups tact Jeanie for info/appointment Peel Region (Brampton, Mis- provide info, harm reduction, support, education and New Westminster Stride “HepC” Support [email protected] sissauga, Caledon) 905-799- more: Group each Fri 10 AM except 4th Fri. of the 7700 ♦ Campbell River: Drop in, needle exchange, Hamilton Hepatitis C Support month. Nurse Practitioner, refreshments. st advocacy. 1371 C - Cedar St. Contact Contact: Stride Workers 604-526-2522, Group 1 Thurs. monthly, 6-7 [email protected] [email protected] 250-830-0787 [email protected] PM, Hamilton Urban Core Com- St. Catharines Contact Joe ♦ Comox Valley Harm reduction, counselling, munity Health Centre, 71 Rebec- 905- 682-6194 th North Island Liver Service Info, support, advocacy. 355 6 St., Courtenay. Contact ca St, Hamilton. Contact Maciej Sarah treatment. Doctor or self-referral. 1-877- Sudbury Circle C Support 215-7005 250-850-2605. Kowalski, Health Promoter 905- Group 1st Tues. monthly. [email protected] 250-338-7400 nd ♦Courteney: 2 Fri monthly 1PM, Drop-in, 522-3233 mkow- ♦ Nanaimo Counseling, advocacy. 201-55 Victo- Contact Ernie 705-522-5156, Comox Valley Nursing Centre (nurse) [email protected] ria Rd Contact Anita for details. 250-753-2437 nd [email protected] ♦Campbell River: 2 Tues monthly 1PM [email protected] Hep C Team, AIDS Committee or Monique 705-691-4507. Drop-in, Salvation Army Lighthouse. ♦ Port Hardy (Port McNeil, Alert Bay, Port Hardy, of North Bay & Area. Education, st Sayward, Sointula and Woss) Drop-in kitchen. 7070 (nurse) Toronto CLF 1 Mon. month- outreach, treatment, individual & Shorncliffe Rd. Contact Tom, 250-949-0432 ly Oct.—June, 7:30 PM, North Penticton & District Community Resources group support, harm reduction, [email protected]. Society, Harm Reduction Program, 330 Ellis York Civic Centre, 5100 needle exchange. 269 Main St. ♦Victoria Access Health Centre, drop in, disability Street, Penticton. Contact: 250-488-1376 or Yonge Street. Contact Billie applications, peer training. Support group Tues 250-492-5814 W, Suite 201, North Bay. Con- 416-491-3353, ext. 4932. 12:30 PM, 713 Johnson St., 3rd floor, 250-384-2366 tact 705-497-3560, 1-800-387- Positive Haven Info, harm reduction, sup- [email protected] [email protected] 3701 or www.liver.ca port, drop in, clinic. 10697 135A St. Surrey. Boundary HCV Support and Education [email protected], Contact Monika 604-589-9004. www.aidsnorthbay.com Thunder Bay Hep C support. Contact Ken 250-442-1280 [email protected] Positive Living Fraser Valley Contact Sarah Tycholiz 807- Hepatitis C Network of Wind- 345-1516 (or for 807 area only Burnaby HCV Support Contact Beverly 604- (Abbotsford) Hep C support Drop-in cen- sor & Essex County Last Thurs. tre: Unit #1 2712 Clearbrook Rd., M-F 1-800-488-5840) 435-3717 [email protected] monthly, 7 PM, Teen Health 10:30 AM-4:30PM. Info, support worker, Unified Networkers of Drug Castlegar Contact Robin 250-365-6137 rides to appointments in surrounding areas. Centre-Street Health Program [email protected] Contact 604-854-1101 or hepcsup- Office, 711 Pelissier St., Suite 4, Users Nationally [email protected] Windsor. Contact Andrea Monk- [email protected]

Comox Valley Positive Wellness North Island man 519-967-0490 or hepcnet- Treatment/Pre & Post-treatment Support Powell River Hepatology Service Powell York Region Hepatitis C rd [email protected]. rd Group 2nd & 4th Wed., 615-10th St, Courte- River Community Health, 3 Floor–5000 Education Group 3 Wed. Joyce Ave. Contact Melinda http://hepcnetwork.net monthly, 7:30 PM, York Re- nay. Lunch. Contact Cheryl [email protected] 604-485-3310 gion Health Services, 4261 [email protected] 250-331-8524. Kingston Hep C Info HIV/ Hwy 7 East, B6-9, Unionville. CoolAid Community Health Centre, Victoria. Prince George Hep C Support Contact Ilse AIDS Regional Service. Con- [email protected] tact 613-545-3698, 1-800-565- Contact 905-940-1333, 1-800- Meetings each Wed 10 AM. 713 Johnson St. Support for all stages of treatment (deciding, Queen Charlotte Islands/Haida Gwaii & North- 2209 www.hars.ca 361-5653 during, after). Contact Roz ern BC support. Contact Wendy 250-557-2487, 1- [email protected] [email protected] [email protected] 888-557-2487, http://health.groups.yahoo.com/ rd www.hepcyorkregion.org Kitchener Area Support 3 group/Network-BC/ [email protected] Courtenay HCV Peer Support and Education. Wed. monthly, 7:30 PM, Ray of QUEBEC: www.wendyswellness.ca Contact Del 250-703-0231 Hope Community Room, 659 Quebec City Region Contact [email protected] Slocan Valley Support Group Contact Ken 250- King St. East (Enter off King 355-2732, [email protected] Renée Daurio 418-836-2307 Cowichan Valley HCV Support Contact Leah 250 St) Kitchener. Contact Bob 519- [email protected] -748-3432 [email protected] Sunshine Coast-Sechelt Healthy Livers 886-5706, Mavis 519-743-1922 Support Group Information/resources, con- or waterlooregionhepcsup- ATLANTIC PROVINCES: HepCBC [email protected], www.hepcbc.ca th tact Catriona 604-886-5613 ♦Victoria Peer Support: 4 Tues. monthly 7- [email protected] Hepatitis Outreach Society [email protected] or Brent, 604- 8:30 PM, Victoria Health Unit, 1947 Cook St. 740-9042 [email protected] London Hepatitis Hep C Sup- of NS. Info and support line Contact 250-595-3892 Phone support 9 AM-10 PM. port 186 King St, London. For for the entire province. Call 1- 250-595-3891 VANDU The Vancouver Area Network of those infected as well as affect- 800-521-0572, 902-420-1767 Drug Users. 380 E Hastings St. M-F 10-4 ♦Fraser Valley Support/Info: 604-576-2022 [email protected] Contact 604-683-6061 ed by Hep C. Contact: 519-434- Kamloops ASK Wellness Centre. Chronic 1601, 1-866-920-1601, www.hepatitisoutreach.com [email protected] www.vandu.org illness health navigation/support. www.hivaidsconnection.com PRAIRIE PROVINCES: [email protected] 250-376-7558 1-800- Vancouver Hepatitis C Support Group

661-7541 ext 232 or Merritt health housing & Contact 604-454-1347 or 778-898-7211, or Oshawa Community Health Manitoba Hepatitis C phone counseling 250-315-0098 www.askwellness.ca call 604-522-1714 (Shelley), 604-454-1347 Centre Hepatitis C Team and email support and out- nd th (Terry), to talk or meet for coffee. Kamloops Hep C support group, 2 and 4 Wed 115 Grassmere Ave. Social reach. Info Line: 1-204-779- monthly, 10-1 PM, Interior Indian Friendship Vernon telephone buddy, M-F 10-6 Contact worker, outreach worker, coordi- 6464 or contact Kirk at in- Society, 125 Palm St. Kamloops. Contact Cherri 250- Peter, [email protected] Tel. 250-309-1358. nator, nurse. Hep C Support [email protected]. Direct line: 1 376-1296 Fax 250-376-2275 Group meetings—1st Wed YouthCO HIV/Hep C Society of BC. Drop-in -204-389-5814 Kelowna Hepkop: Phone support and meeting info. T&W 12-3, Fri. 9-12. Call for appts M-F 10-6. 205 monthly, 6 PM, 79 McMillan Medicine Hat, AB Hep C Contact Elaine 250-768-3573, -568 Seymour St, Vancouver 604-688-1441, 1- St. www.ochc.ca Contact 1-855- st rd [email protected], Lisa 1-866-637-5144 855-YOUTHCO Stewart [email protected] , 808-6242 Support Group 1 & 3 Wed. [email protected] Briony monthly, 6:30 PM, HIV/AIDS [email protected] www.youthco.org Owen Sound Info, support. Network of S.E AB Assoc, 550 Mid Island Hepatitis C Society Contact mid- Contact Debby Minielly Whitehorse, Yukon—Blood Ties Four Direc- Allowance Ave. Contact 403-527 [email protected] dminiel- tions -7099 [email protected] Nanaimo Hepatitis C Treatment Support Contact 867-633-2437 1-877-333-2437 blood- [email protected] Contact Fran 250-740-6942. [email protected] 1-800-263-3456 Ext. 1257, To list Canadian groups [email protected] 519-376-9420, Ext. 1257, here, please send details to th [email protected] by the 15 Nelson Info & support for prevention, testing, of the month. It’s free!

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