HCV Advocacy within ASOs:

Maintaining our Mission while exploring the Space beyond

HIV/HCV Co-Infection

Cheryl Reitz, M.A.Community Rep with Action Hepatitis Canada and

HCV+ Board Member and Volunteer withHepCBC Hepatitis C Education & Prevention Society

www.hepcbc.ca

TODAY’S GOALS

• Get a conversation started

• Look at a few awful facts

• Grapple with two awkward questions

• Brainstorm other facts, questions, and directions

• Make a plan to continue conversation!!!

PART 1: The Facts

CATIE & AIDS Vancouver Island (AVI)with mono-infected HCV+ women

in Victoria, BC, Body-Mapping Workshop, 2011

Jade Hood, 1951 - 2012

Current Face of Hepatitis C• The IVDU population is most at risk of contracting or

transmitting HCV.

• The cohort of those born 1945-1965 is most at risk of dying from HCV, and a large % of them don’t know they have it. FIND+TEST+TREAT could prevent many people from dying prematurely.

• Incidence/transmission rates of HCV are going DOWN.Death/mortality rates from HCV are going UP.

• Liver cancer rates among men have tripled since 1970s, mostly due to hepatitis C.

• More North Americans die of HCV than HIV/AIDS.

4.4 hepatitis deaths to 1 HIV death

Canada, 2010The Economist: www.economist.com/blogs/

graphicdetail/2013/07/daily-chart-21

Gordon McClure, 1948(?) - 2012

Morbidity and Mortality for the top 20 pathogens in ON, ranked by disease burden

OnBOIDS, Dec 2010

Hepatitis C virusStreptococcus pneumoriae

Human papillomavirusHepatitis B virus

Escherichia coliHIV/AIDS

Staphylococcus aureusInfluenza

Clostridium difficileRhinovirus

Respiratory syncytial virusParainfluenza virus

Group B steptococcusGroup A steptococcusHaemophilus influenza

TuberculosisLegionella

ChlamydiaAdenovirusGonorrhea

Years of Life Lost (YLL)

Year-Equivalents of Reduced Functioning

(YERF)

0 2,000 4,000 6,000 8,000 10,000

Health Adjusted Life Years

Doreen Stalker, 1931-2010

Liver Cancer Rates

Up 3X! Tripled for MenUp 2X! Doubled for Women

(since the 1970s)

Most of this is due to high rates of hepatitis C in the Baby Boomer generation.

Source: Canadian Cancer Society-CBC News, May 29, 2014

Ken Thomson, 1954-2013

HCV: Increased Cirrhosis, Liver Failure, and demand for Liver Transplant.

• HCV can cause cirrhosis, which destroys the liver, but HCV can also affect other systems such as the circulatory system, digestive system, blood, nervous system and brain, urinary tract, andskin.

Projected liver-related outcomes:Population 242,521

0

100

200

300

400

500

600

700

800

900

1967 1972 1977 1982 1987 1992 1997 2002 2007 2012 2017 2022 2027

Cirrhosis

Death

HCC

Decompensation

Cas

es

Remis R. Public Health Agency of Canada, 2007

Ron Thiel, 1932-2001

Therapeutic Differences

• HIV HAART therapy is taken over many years.

• HCV therapies are only taken once, in most cases (over a course of several weeks).

• HIV is becoming a chronic condition.

• HCV is becoming a curable disease.

• Pharmaceuticals plan to charge a lot more per pill for HCV therapies!

Neil Van Dusen, 1958-2006

20% of HIV+ people are co-infectedbut only

5% of HCV+ people are co-infected

95% of HCV+ people in Canada are Mono-Infected.

• Source: www.cocostudy.ca

Mortality in the Canadian Co-infection Cohort Study

SMR: 17.08 (95% CI; 12.83, 21.34)

Cause of death N %

ESLD 18 29

OVERDOSE 15 24

CANCER 6 10

AIDS 3 5

OTHERS (infections/trauma)

9 15

UNKNOWN 11 18

Total 62 100

0

2

4

6

8

10

12

14

Death

s/

10

0 P

erson

-Years

Age Categories

Death Rate Total

Total Population

Total CCC

Klein. HIV Medicine, 2012

PHAC’s Annual Budget:

• HCV $ 3,500,000

• HIV/AIDS $23,000,000

• Could this have something to do with…

The AIDS Lobby

The HCV Lobby (Eastern Division)

The HCV Lobby (Western Division)

The biggest similarities between HIV and HCV?

PREVENTION METHODS plus…

STIGMA, STIGMA, and

STIGMA!!!

Friends at a 2012 PAN conference: Together we represent over 150 years of HCV!

HCV+ “Baby Boomers” from Vancouver Island

Does your organization focus on HCV…

• HIV/HCV co-infection OR mono-infection?

• Those who are still in danger of infecting and/or contracting HCV OR those who are not?

• HCV Prevention OR HCV Find/Test/Treat?

• Those with active addictions OR those who are no longer (or were never) addicted?

• Young OR middle-aged and older?

• Mostly marginalized OR mostly secure in terms of food and shelter?

• OR SOMETHING in the MIDDLE?

Founders of HepCBC, one of Canada’s few HCV-only organizations, in front

of BC Legislature, ca. 1996

At a multicultural Health Fair in Victoria, BC, Sept. 2012

Marching in Victoria Day Parade in Victoria, BC – May, 2011

Victoria, BC, Victoria Day 2011 ParadeEnd of parade route…

Kelly O’Dell, 1965(?) – 2011Photo taken on the last day we saw her before her death

HCV pamphlets delivered to Friendship Centre in Terrace during 2013 Outreach Trip to Northern & Interior, BC

Half-marathon walkers on the 2013 HepCBC Liver Warriors team and info-booth volunteer at Victoria GoodLife Marathon

Half-Marathon and Marathon Walkers/Runners on 2012 HepCBC Liver Warriors team – trying to fight stigma and educate the public about our awful but curable disease

AWKWARD QUESTION #1 • It looks like Health Canada is asking the AIDS

Service Organizations (ASOs) who receive PHAC funding to integrate HCV, HBV, STIs, Hep B, and TB into their services, without giving them additional funding.

• IS IT FAIR TO EXPECT THAT ASOs -- formed out of the passion, fervor, and sacrifices of the HIV/AIDS movement -- should expend the same energy advocating on behalf of those with HCV (and the other STBBIs) as they do on HIV?

• (just YES or NO plus 1 or 2 reasons why/why not)

• 4 minutes total – choose 1 person to present

PART 2: The S*** Disturbers

VOICES OF HCV+PEOPLE

Through Canada’s formal Drug Review process: HCV Therapeutic Drug Review

and…

Through a grassroots Initiative: HCV Manifesto

CADTH HCV Therapeutic Review

• Genotype 1 only

• Reviewing the entire scope of HCV treatment, not only one drug

• First time CADTH included the voices of Patient Groups in any Therapeutic Review

• Concerned with safety, efficacy, and cost

Who submitted?

• Canadian Treatment Action Council (CTAC)

• Canadian Liver Foundation

• Pacific Hepatitis C Network (in BC)

• Positive Living BC (in BC)

• HepCBC Hepatitis C Education & Prevention Society (in BC)

HCV+ people in BC are in the mood for speaking out these days, looks like!

How many pages…

HepCBC got LONG submissions from 21 Genotype 1 HCV+ individuals who really poured their guts out. Wow. I will read just a couple paragraphs so you get the flavour…

We had to distill this down to a maximum 6 pages to submit to CADTH!

How many pages…(part 2)

CADTH received 6 pages from 5 organizations = 30 pages of text.

CADTH distilled this down to a 4 page summary!

CADTH will put links up to the 5 organization’s actual 6-page submissions so the public can read them.

Profile of 21 HCV+ People in HepCBC’sPatient Group Submission

• GENDER: 12 males, 9 females; AGE: Range 39 – 69. Average 57.3 yrs. Median 58.5 yrs.

• PROVINCE: 2-Alberta, 1-Manitoba, 1-Ontario, 17-British Columbia

• GENOTYPE: Individuals identifying as GT1a=11, GT1b=4, and simply “GT1”=6.

• CO-INFECTIONS: One individual identified as co-infected with HIV (& HBV though 'inactive')

Impact of Condition on Patients

• “I've always been very friendly and social, but have become isolative because, I'm just too damn tired. Life is becoming a little more lonely because of that. When I'm off work, I usually stay home. When I'm at work, I drag myself through the day and live in fear, that, due to brain fog, I will make a horrible mistake.”

Patients’ Experiences withCurrent Therapy - 1

• "When I was on the three combo drug therapy, I developed 'firehea' from the telaprevir. This is something that only someone on this therapy can understand. It is an unbearable burning sensation when you go to the bathroom."

• “Boceprivir can make everything taste REALLY BAD. It's like sucking on a rubber tire and not being able to spit it out.”

Patients’ Experiences with Current Therapy - 2

• "(Most people on my website who) didn’t cure with the older drugs are now refusing treatment and are holding out for the new drugs that will cure us all without frying our brains at the same time. How could we ask that our citizens be given drugs that cause so much harm when these new treatments are so effective? What price do we put on human life that we would even consider giving someone a lesser drug simply because it might be a bit cheaper than the new drugs coming out?”

Impact on Caregivers• “My wife has voiced to me on numerous

occasions that she really wonders if it was a good thing that I was diagnosed with Hep C as the treatment has not cleared me of Hep C, but it has left me with long-term effects that have had a huge negative impact on my life and hers. She hopes that one of the newer drugs might give me an opportunity to clear the Hep C. The situation right now is one of limbo for her and for me. The stigma of Hep C also made it difficult for my wife to talk to co-workers and ask for support. This has made her feel sometimes as isolated as I felt.”

Expectations for New Drugs, from people with no experience with them

• “My life would dramatically change should I clear this virus from my body. To just imagine a life without the ongoing symptoms of hep C…I might return to work, develop new relationships, and most importantly end the progression of this disease which is slowly killing me by destroying my liver and other organs.”

• “I would rather die than go through this (current “SOC” therapy) again.”

Reports on New Drugs, from people who have experience with them

• (asunaprevir and daclatasvir trial for 1b only):

• “No interferon, no ribavirin, no needles, no special dietary requirements, and no side effects. I even walked the half marathon 4 months into treatment. I could have worked while on this treatment, but I’d already retired. 13 months post treatment I remain SVR, though my platelets are somewhat low. My pre-treatment Fibroscan was 49.6 kPa; 12 months post-treatment it has dropped dramatically to 18.0 kPa.”

Additional Information

• “Get rid of interferon and ribavirin asap. “

• “Get rid of liver damage requirements so patients can get treated sooner, when treatment will be more effective (and its benefits last longer!).”

• “Insist that treatment be affordable…If 170 million of us worldwide were cured, plus the many more that do not know they have the disease yet, the reduced cost to the health system and governments would be enormous…”

Update to CADTH Therapeutic Review• In the few weeks since this Review took place, there

have been several powerful advocacy efforts by HCV+ people and ASOs such as CTAC and Positive Living BC, addressing the lack of access to improved new drugs due to

• CADTH’s new “queued” drug review schedule

• Lack of assigning review priority to life-saving drugs

• Private payers can purchase life-saving drugs while those dependent on Pharmacare must wait for additional reviews.

• High cost of new HCV drugs may put them out of reach of most people who need them.

HCV MANIFESTO – seeking public support

• Now is the perfect moment to deal with the way hepatitis C is addressed in Canada and worldwide.

• HCV+ people must discover their voices, and speak in one loud voice to decision-makers.

• Targets the public because we need their support!

• Our current goal is for 1000 individuals and 200 groups to sign their support of the HCV MANIFESTO online at www.hepcbc.ca

• HepCBC now is simply collecting the signatures, does not ‘own’ the document.

• ACKNOWLEDGEMENTS: While this HCV Manifesto is a “work in progress,” the authors wish to acknowledge the previous groundbreaking work of the HIV/AIDS community from which many of the above wordings have been adapted, such as the Denver, GIPA, MIPA, and “Nothing About Us Without Us” principles. Some items also have been adapted from the Canadian Treatment Action Council’s “Treatment Access Bill of Rights” document © 2013 by CTAC.

Between Jan. 16 and Feb. 24, 2014

HCV MANIFESTO has been signed by

• Canadian AIDS Treatment Information Exchange (CATIE)

• Canadian Treatment Action Council (CTAC)

• HepCBC Hepatitis C Education and Prevention Society

• Positive Living Fraser Valley Society (PLFV)

• Vancouver Island Persons with AIDS Society (VIPWAS)

• 52 individuals• and 9 organizations:• AIDS Network Kootenay

Outreach and Support Society (ANKORS)

• AIDS Vancouver Island (AVI)

• ASK Wellness Society (ASK)

• BLOOM CLINIC of the Bramalea Community Health Centre in the Region of Peel, Ontario

Confronting Hepatitis C:A Grassroots Initiative

Hepatitis C doesn’t respect borders, affecting at least 150 million people

worldwide.The HCV Manifesto can be used in any

country. If you use it or translate it, we’d love to hear!

• mmm

In particular, note:-- We ask that individuals and groups...

• Support greater and meaningful involvement of people with HCV at all levels of civil society, community organizations, and government (volunteers, staff, spokespeople, and decision-makers).

• Support stable and proportionate funding for HCV organizations and groups which reflects the burden of the disease. When appropriate, include people who are mono-infected with HCV (95% of all people with HCV) in funded programs for HIV+/HCV+ co-infected people.

• Support the principle that people with HCV be actively and closely involved in the design and delivery of services we need: "Nothing about us without us!"

-- We as people with HCV commit to...

• Forming groups to choose our own representatives, deal with the media, select our agenda and plan our own strategies.

• Being involved at every level of decision-making and specifically serving on the boards of directors of HCV service-provider organizations.

• Participating in all HCV forums with equal credibility as other participants, to share our lived experiences and knowledge.

EXAMPLE OF GIPA/MIPA Compliance:

Full Voting Membership Requirements, Pacific AIDS Network Bylaws 2.3 (1) & (2)

• “…Have significant HIV/AIDS and/or HIV/HCV co-infection programming in British Columbia as part of their operations.”

• “…Demonstrate significant and appropriate representation of people living with HIV/AIDS or who is HIV/HCV co-infected.”

AWKWARD QUESTION #2 • Many ASOs currently provide services and have policies

which target HIV/HCV co-infected people, but do not promote them to HCV mono-infected people.

• Regional ASOs such as PAN will likely be asked to allocate HCV funding on behalf of PHAC, yet some do not permit organizations addressing HCV mono-infection to become full voting members.

• IS IT FAIR TO EXPECT ASOs to expand the principle of "Nothing about Us Without Us" (or GIPA/MIPA) to cover diseases such as HCV -- in addition to HIV/AIDS -- for which they provide services or allocate funds?

• (just YES or NO plus 1 or 2 reasons why/why not)• 4 minutes total – choose 1 person to present

THANKS, EVERYONE!! WE DID IT!!

• When you get a chance, read the HCV MANIFESTO.

• Sign it online and promote through Social Media if you agree with it.

• Promote it to your organization, and to other groups to which you belong; encourage them to become organizational signers.

• If you (or your organization) cannot sign or don’t agree with some part of the HCV MANIFESTO let us know. It is a Work in Progress!