Minutes of Hepatitis C Networking Meeting, Beirut
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21.04.2011

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Hepatitis C Networking Meeting

April 5, 2011 – Beirut

1. Advocacy work

 

1.1 International HIV/AIDS Alliance in Ukraine

In Ukraine, the Alliance works on few objectives, including coordinating hepatitis advocacy working group, pushing for national government program on viral hepatitis, and identifying opportunities of hepatitis funding with donors. The working group includes both national advocates and local community groups that work on hepatitis advocacy. The biggest success of advocacy so far is approval of the concept of national hepatitis program by Government, which instructs that in few months a draft national program should be prepared by a working group with involvement of civil society. Donors are not open for hepatitis funding: The Global Fund’s TRP rejected Ukrainian CCM request and justification for hep C treatment for people living with coinfection of HIV/HCV. Below is more information on the subject under Global Fund Round 10. USAID also informed they are not funding hepC treatment due to a high price.

 

1.2. Light of Hope, Poltava, Ukraine

It is one of 9 hepC advocacy projects in Ukraine that were supported through a national small grant program. Their regional advocacy project started with documenting evidence on absence of HCV testing in healthcare settings (and one doctor saying that he can see that the person requesting HCV testing does not have HCV, so does not need the test). The video was presented to oblast (regional) department of health at a round table that concluded with a recommendation of introducing a regional hepatitis program. Having a national program’s concept helped to make the case of the need of the regional program. They expect that the program will be approved and get small funding from regional budget for tests, diagnostics, improving lab and providing 5 treatment courses. The Light of Hope continues doing treatment literacy and train social workers on hepC.

Link to the video done with a hidden camera (in Russian):

http://www.lightofhope.com.ua/ukr/about/videos/chy_mozhlyvo_v_poltavi_projty_bezkoshtovne_obstezhennya_na_gepatyt_v_ta_s/

 

1.3 Soros Foundation Kyrgyzstan

The Foundation supports hep C advocacy work of two harm reduction coalitions and a legal clinic work. Their research among people with/without hepC and health professionals showed that the key problem with access to hepC treatment is high price of diagnostics and treatment and revealed that this negatively affects motivation to know one’s status, lack of professionalism in care including division of health professionals into two schools: Russian school promoting non-pegylated interferon and other recommending treatment with peg-interferon. So far, access was possible back in 2008 through charity from the US with soon-to-expire medicines. Country’s request for hepC treatment for people with HIV/HCV coinfected was denied by the Global Fund (Round 10). But there is some progress/results of advocacy. A national targeted program on viral hepatitis was approved in 2011. HepC advocates push for steps towards its implementation and government showing the demand for treatment to donor agencies. Specific recommendations for improving patent law for better access to medicines are expected to be considered by Parliament in 2011. In addition to the three groups, national offices of WHO and MSF also put hepC high on their agendas.

 

1.4 Open Society Foundation Georgia

Georgia has particularly high HCV prevalence (estimated 6.7% in general adult population) but yet no political commitment and no national funds for treatment. Georgia is preparing for provision of hepC treatment to PLHIV (with support from the Global Fund Round 9) and activists are planning monitoring activities to ensure that treatment reaches those in highest need, procurement is transparent, people who use drugs are not discriminated, etc. National health system is based on state and private health insurance (only 1/3 have state insurance), thus one of the considered direction for advocacy is working with private insurance companies to include hepC into their package. Georgian Harm Reduction Network set hepC as one of its priorities and work on community mobilization and will contribute to defining national advocacy strategy. More community action is expected later this year after small grants are given to local groups.

 

1.5 Andrey Rylkov Foundation (ARF), Russia

ARF starts documentation that would demonstrate the gap between high demand for treatment and low access in Russia. In Russia, hepC treatment is paid for a limited amount of PLHIV through a federal program ‘Health,’ additionally some limited funding is available to pay for some treatment of health professionals. Recently peg interferon was included in the national Essential Medicine List but the affects on access are not known yet. Since there is a major diversity of situation across this big country, ARF will review federal data and situation in three selected regions. They will combine analysis of epid data for estimating the need for treatment, budget analysis and government guarantees in the field of hepC diagnostics and treatment, how many people actually received diagnostics, treatment, levels of prices and get in-depth information through key informants including people living with hepC. To understand the legal regulations, they are using experiment method: a person is trying to get diagnostics and treatment and he supported his inquiry with general legal arguments drafted by expert from Canadian HIV/AIDS Legal Network; ARF looks forward for answer to the inquiry which should indicate legal basis for health care institutions to provide or not to provide care. Similar inquiries could be used for campaign with a number of patient requesting for diagnostics and treatment. The report should be finalized in 2011 and will shape advocacy work.

 

1.6 International Treatment Preparedness Coalition in Eastern Europe & Central Asia

ITPC-EECA coordinated the signons and submission of activist letter to WHO Executive Director demanding: a global hepC access program with a roadmap similar to WHO 3by5 initiative, including hepC into prequalification program and its medicines in the WHO Model List of Essential Medicines, as well as dedicating at least one staff member in its headquarters and regional offices. Deadline for WHO response is June.

Additionally, ITPC-EECA does analysis of procurement of hepC medicines in Russia that could be used in the ARF’s report and plan a review of hepC treatment access across the region.

 

1.7 Eurasian Harm Reduction Network (EHRN)

EHRN launches a training manual on hepC treatment and care for people who inject drugs, which is designed for harm reduction services providers. In 2011, the organization has more focus on strategic documentation of and advocacy for increased access to treatment in Eastern Europe and Central Asia. They have just hired a full time coordinator Konstantin Lezhentsev. The first advocacy opportunity will be at upcoming European AIDS Conference in May in Tallinn where the EHRN plans a satellite meeting.

www.harm-reduction.org

 

1.8 Thai AIDS Treatment Action Group (TTAG)

Started work on hepatitis back in 2006. A training manual on hep B/C for PLWUD / PLHIV was developed and is being used for training community. The manual is available in Thai and English. Policy brief on Thailand and HepC/HIV coinfection was produced and sum-ups TTAG’s advocacy agenda. Based on agenda, they expanded their work on training lawyers and community on intellectual property issues. They plan to work with Thailand’s Country Coordinating Mechanism on having hepC included (while the news about the Global Fund are not inspiring..). Still there are no treatment protocols on HIV/HCV coinfection, while there is one for monoinfection. TTAG puts pressure on national security to put peg-interferon on national Essential Medicine List but that requires cost effectiveness and efficacy studies; some data exist from pharma-funded economic studies.

 

1.9 Asian Network of People Who Use Drugs (ANPUD)

ANPUD prioritized hepC in their plans and only start an advocacy project. They are inspired by TTAG example and plan to replicate it to other four countries including Indonesia, Malaysia, Nepal and India. They plan to advocate for including request for hepC diagnostics and treatment in new country proposals to the Global Fund but would see whether it is feasible given that hepC treatment was not supported in most cases in Round 10. They see interest in the issue from national MOH of Indonesia and Malaysia; e.g. Indonesia will allocate small money for the first treatment courses.

ANPUD hired a coordinator who will be supported by technical advisory group comprised of community and experts.

 

 

2. Common themes and OSF support

 

2.1 Potential generic peg-interferons

We are aware of few potential candidates for generic peg-interferon, however do not know much about their quality: Vietnam, Getz Pharma/ Pakistan, Minopharm/Egypt and Milipharm (Indian product registered in Ukraine). This year MSF will do some assessments. OSF hired a biologic product pharmacist who will review quality/safety data for Pakistan, Vietnam and possibly Egyptian product if/when political situation become safe there. Other organizations who are working on looking into the Vietnamese product include MSF and WHO. However, it will be many months before conclusive information is gathered and ready to be shared.

Alliance/OSF are trying to get data from Milipharm in Ukraine; Ukrainian Community Advisory Board was planning too to invite this Indian/UK company to understand better what product has been registered in Ukraine.

It will be important to understand Roche/Merck/generic patent situation and patent regulation in the countries where medicines are produced – OSF starts engaging groups on that as well. OSF will update on findings.

 

2.2 Global Fund Round 10

At least 6 proposals have asked for funding for hepC treatment in Round 10 proposals and all but one, Macedonia, were denied. The Technical Review Panel’s (TRP) justification of such decision is as follows and it is questionable on some aspects at least:

 

The TRP refers to its report to the 22nd Board Meeting (available on line) which states:

“The TRP reviewed several proposals that included funds for the treatment of Hepatitis C and recommended one proposal for funding subject to clarifications. The TRP is concerned that currently available therapy for the treatment of Hepatitis C (Interferon and Ribavirin) is generally not accessible to the estimated 170 million people living with chronic Hepatitis C. Furthermore, evidence suggesting effectiveness of the combined treatment is limited; the treatment is often poorly tolerated in combination with ARV, needs to be closely supervised and presents operational challenges with treatment access and adherence. More effective and better tolerated regimes are expected to come on the market within a short period of time. Applications for funding of treatment using the present regime will only be recommended by the TRP after close scrutiny of the country context, including well-documented evidence that Hepatitis C treatment and funding is available to the general population and that funding from the Global Fund is to fill-in the gap for HIV infected individuals. Applicants should be required to supply this information in their proposal.”

 

“The TRP therefore recommends that Global Fund resources be used at this time to increase the evidence base for the need of Hepatitis C treatment (e.g. prevalence surveys), create awareness and increase prevention efforts (e.g. through supporting methadone substitution and needle exchange program, as well as focusing on infection control in health care setting and blood transfusion safety, which would also benefit prevention of other blood-borne diseases) and support advocacy for access and affordability of new Hepatitis C treatments as they become available. Clearer guidance to applicants in this regard is recommended. The TRP urges partners (UNITAID and Clinton Foundation) to explore possibilities with pharmaceutical industry to see how treatments can be made more affordable.”

 

2.3 When is there enough data?

Often government agencies push back hepC treatment advocacy saying that there is a lack of good data. In a number of cases, there are major gaps in data but that should not be used as an excuse for inaction. Even in Georgia where good professional surveillance study on HCV prevalence in general population was done, again Georgian CDC push back for the need to recheck data and another study to confirm whether data is sufficient. Similarly, knowing whether it is 40 or 60% of people who inject drugs having hepC does not change the need for improving diagnostics, treatment and care.

 

2.4 Regular interferon vs pegylated interferon-alpha

Russia, Kyrgyzstan, Thailand continue having health professionals debating on standard of care and what should be provided – treatment regiment with regular interferon which is much cheaper or pegylated interferon-alpha which is more expensive. Summary of comparison based on scientific evidence is needed (OSF to follow up on this, possibly ARF to help to produce it).

 

2.5 OSF technical support - Health Media Program

This OSF’s program can help to develop tools and campaigns, how to use traditional and social media. It has inspiring examples of access to treatment advocacy from Africa. It has staff in New York and consultants in few regions including in Eastern Europe. Assistance could be provided in Asia upon request. Please ask Azzi to put you in touch with Brett Davidson for inquiries.

 

2.6 OSF and WHO meeting

OSF met with WHO on April 7 and briefly updates on key discussions in this report. WHO develops a guidance on viral hepatitis for PWIDs; so far they are collecting evidence and plan to help expert meeting in the second half of the year; the guidance should be finalized by the end of 2011.

 

WHO HIV representatives were shown the activist letter that was sent to its Executive Director; so far they have not seen it and could not react. There is one coordinator in WHO HQ on hepatitis but mainly hepB. WHO MENA will check possibility of collaboration with OSF regarding Minopharma product in Egypt.

 

WHO SEARO & UNAIDS will organize a workshop on hepatitis for/in India which purpose is mainly to build national commitment (Azzi to follow up).

 

Generally, WHO reactions to the TRP response were reserved.

 

3. Moving forward

 

3.1 Global Fund

Participants suggested working with WHO how to increase understanding of Global Fund’s Technical Review Panels about current standard of care and potential developments with new treatments and price reduction.

 

3.2 Clinton Foundation & UNITAID

Participants agreed to reach out to groups that potentially could get engaged in hepatitis C treatment advocacy – with letters or through civil society Board members (EHRN would take the lead on this):

• to Clinton Foundation requesting to investigate the real manufacturing price and options for price reduction (including assistance in identifying potential quality generics)

• to UNITAID of including hepatitis C, showing the treatment demand (based on the country requests to the Global Fund in Round 10)

 

3.3 Communication among advocates

EHRN will establish a listserv and will invite people participating at the meeting and others engaged in hepC advocacy to join it (OSF will share their contacts). The listserv would be used not as a discussion forum at this point but as one-address for sharing important updates.