Year End Review - August 30, 1999

Prepared by: Gregory Robinson, Co-Chair Ministerial Council 1998-99

Introduction

The Ministerial Council on HIV/AIDS met four times during the year May 31, 1998 to May 31, 1999. The meeting dates and locations were June 16, 1998 (Toronto), September 13 and 14, 1998 (Ottawa), November 8 and 9, 1998 (Montreal) and March 21 and 22, 1999 (Toronto). Meetings were held in the central corridor of Canada to conserve on transportation costs. The members of Council, who were appointed by Health Minister Allan Rock, included: Louise Binder, Andrew Boxer, Liviana Calzavara, Andrew Johnson, Ralf Jurgens, Antoinette Lambert, Roger Le Clerc, Marilyn McCrea, Albert Mceod, Jeff Reading, Gregory Robinson (Co-Chair), Jan Skirrow, Terrence Stewart, Dominique Tessier (Co-Chair), and Mark Wainberg. Ex-officio members were Bryce Larke (representative from the Federal/Provincial/Territorial Advisory Committee on HIV/AIDS) and Ian Potter (Assistant Deputy Minister, Health Promotion and Programs Branch, Health Canada). This was a formative year for Council. Many issues were raised and members did rise to meet the many changes in HIV/AIDS by engaging in sometimes very complex and
difficult discussions. All Council members contributed to successfully providing guidance on the
Canadian Strategy on HIV/AIDS (CSHA). The following report summarizes the four meetings of Council, highlights some of the key accomplishments and lists the advice provided to Health Minister Allan Rock

Meeting Summaries

June 16, 1998

The inaugural meeting of the Ministerial Council on HIV/AIDS was called immediately by the Co-Chairs soon after the official announcement of the Canadian Strategy on HIV/AIDS by Health Minister Allan Rock. This initial meeting provided an opportunity for Council members to get to know each other and to express what each member expected the Council to accomplish. Members had an initial discussion on the work of Council and how we would do our work. Some of the important decisions made by Council included the following:

• decisions of Council would be made by consensus;
• a Record of Decisions would be kept and made public (the record would contain no attribution to individual members); and
• advice to the Minister would come with a time period for response. (During the response period no public mention of the advice would be made in order to respect the Minister's need to deal with the content of the advice.)

Council also discussed priorities for the Canadian Strategy on HIV/AIDS and came up with a two category system for action. First, were issues on which the Ministerial Council will need to take direct and decisive action. Second, were issues that were, in the assessment of Council, being dealt with under the Strategy and for which ongoing monitoring and reporting to Council would be useful.

Council decided to remain as open as possible to the public (given the previous limitation of a specified time period for response to advice provided to the Minister of Health). The Co-Chairs were to speak on behalf of the Council in the interim until a formal communications plan was adopted. Ex-officio members of Council were present to provide valuable advice and linkage, but were not to vote on Council issues. Council also requested that a list of the numerous previously prepared reports on HIV/AIDS be made accessible and circulated to members who requested them.

Hot and emerging issues which were discussed at this meeting included:

• the balance of funding between prevention, care, treatment and support, and research under the Strategy allocations;
• the need to have research dollars flow across fiscal years;
• concerns with both the community-based and Aboriginal-based research programs;
• the lack of basic prerequisites for health in Aboriginal communities which are facing HIV/AIDS among many other health and social issues;
• the slow HIV/AIDS drug approval process in Canada; and
• how to evaluate the Canadian Strategy on HIV/AIDS.

STATUS UPDATE:
1. Records of Decision from Council meetings are being kept and will be posted on the Council website beginning in 1999-2000.

September 13-14, 1998

This first two day meeting of Council was devoted to answering two questions: who we are, and how will we do our work? Based on its deliberations, Council redrafted and adopted its new Terms of Reference (Appendix A). The redrafted Terms of Reference were subsequently approved by Health Minister Allan Rock. Based on the new Terms of Reference, Council decided to try a system of committees (or working groups). The following standing committees were established: Long-Term Visioning, Championing Current and Emerging Issues and Monitoring and Evaluation. Priority items discussed during the meeting were subsequently assigned to these groups (Appendix B). The committees were put in place on a trial basis to attempt to see if Council could continue work on issues between Council meetings. An independent consultant (Hajo Versteeg) was hired to assist the Council secretariat (Janet Dunbrack) in assessing how members of Council thought the new committee system was working and to bring forward this assessment to the next meeting of Council.

During this meeting, Health Minister Allan Rock attended on the second day. Members of Council addressed the Minister, providing input on the issues being faced in the field of HIV/AIDS and highlighting obstacles and barriers. The Minister was attentive to the Council's presentations, provided input back to Council members and thanked members for their dedication and work. Council also provided input on the upcoming World AIDS Day events for December 1999, and forwarded its newly drafted Terms of Reference to the Minister.

Michael Jacino from Health Canada presented some initial ideas for a communication strategy for Council. The Ministerial Council's communications strategy is still an outstanding issue and under development by Health Canada. An evaluation framework for the Canadian Strategy on HIV/AIDS was also presented by Reg Warren and Rick Wilson (consultants to Health Canada from the University of Toronto Centre for Health Promotion) during this meeting. The Monitoring and Evaluation Committee has been working with Health Canada and the consultants since this meeting to finalize both the Governmental Performance Reporting Framework (commonly referred to as the public accountability framework), and the Non Governmental Performance Reporting Framework.

November 8- 9, 1998

Formative and evaluative work was accomplished on the function of the Council committees. It was decided to stay with the committee method for accomplishing Council's work at least in the interim. Roles and responsibilities were assigned to the various committees. In addition, Council formed an Executive Committee to oversee the critical work of Council and to coordinate Council's activities between meetings. The composition of this committee included the Chairs of each of Council's Standing Committees (Visioning, Championing, and Monitoring and Evaluation), the Chair of the Special Working Group on Aboriginal Issues, and the two Council Co-Chairs. This committee has been a tremendous asset to Council since its inception.

The Special Working Group on Aboriginal Issues (SWGAI) was also formed during this meeting. SWGAI was to advise Council on its role and action with respect to HIV/AIDS and Aboriginal communities. Council also sent a letter to Minister Rock highlighting the issue of HIV/A1DS and Aboriginal peoples and the special responsibility that the Canadian Government has to Aboriginal peoples.

This meeting also generated a lot of discussion about anticipating any unspent funds under the Canadian HIV/AIDS Strategy, and sent a strong message to Health Canada about monitoring allocations under the Strategy and providing routine financial statements to Council. Further, Council sent a letter to Minister Rock expressing its concern about any potential unspent funds and the need to roll over lapsing dollars into the next fiscal year.

Council requested that further legal input on the issue of honoraria be presented to members at its next meeting. Council also advised the Minister with respect to World AIDS Day events (December 1, 1999).

STATUS UPDATE:
2. In a response to Council's letter, the Minister re-affirmed the commitment of the Canadian Strategy on HIV/AIDS to respond to the critical situation of Aboriginal People and HIV/AIDS in Canada.
3. All lapsing funds from the CSHA in fiscal year 1998-1999 were rolled over into 1999-2000.
4. A policy position on honoraria has been developed for Council's consideration

March 21-22, 1999

During this meeting each of the Standing Committees and the Special Working Group demonstrated the extensive work that each accomplished between Council meetings. Highlights included:

Visioning

The Visioning Committee prepared and presented a Vision Statement for Council which was adopted (Appendix C). This committee was going to have one further teleconference subsequent to this Council meeting to plan the future of this committee and report at the September 1999 Council meeting.

Monitoring and Evaluation

This committee presented its work on evaluating the Canadian HIV/AIDS Strategy. The committee provided much needed input into both the Governmental Performance Reporting Framework and the Non Governmental Performance Reporting Framework. The committee continues to examine the utility of these frameworks for Council and further adaptation of processes which will contribute to Council's ability to effectively monitor and evaluate the Canadian Strategy on HIV/AIDS.

Championing

The Championing Committee brought forward many recommendations which were endorsed by Council. Their work highlighted the need for a Women's Task Force on HIV/AIDS, the call for immediate action on the recommendations from the 1996 HIV/AIDS and Prisons Report (Canadian HIV/AIDS Legal Network and the Canadian AIDS Society), the need to set up a National HIV/AIDS Research Committee to coordinate our research response to HIV/AIDS, the call for a specific HIV/AIDS Institute under the Canadian Institutes of Health Research, the continuing saga of slow HIV/AIDS drug approval in Canada, and ideas on corporate involvement in HIV/AIDS.

Special Working Group on Aboriginal Issues

The work of this group contributed to Council initiating a priority setting agenda for each meeting. The complexity of issues in HIV/AIDS and Aboriginal communities emphasized the need for the September 1999 Council meeting to devote time to this area.

Other Business

A process for approval of the Record of Decisions and the Record of Meeting for Council was adopted. The Record of Meeting was to be used as one method for communicating the proceedings of Council to the public.

Council decided that, for planning future public events such as World AIDS Day, the Championing Committee would be Council's point of contact and provide input to Council.

Council provided advice to Minister Rock on the yearly reconstitution of Council (appointment of members, turnover of members and appointment of Co-Chairs).

Council thoughtfully provided advice to Health Canada on processes to roll over Strategy funds into the next fiscal year.

Council members noted the acute problems with AIDS Community Action Program funding (ACAP). This issue remains to be further discussed at Council.

Members highlighted the need to re-examine allocations under the Canadian Strategy on HIV/AIDS. This issue remains to be followed up by Council.

Council agreed to institute honoraria (prospectively) for members, and requested that the Executive and the secretariat work on implementation issues using e-mail discussion with members to prepare for a further discussion in September 1999. Council also received a presentation on the legal liability of members at this meeting.

STATUS UPDATE:
5. Visioning - The work of the Visioning Committee was completed. An agreed upon Vision Statement for Council is attached (Appendix C).
6. Women and HIV/AIDS - The Championing Committee is working with Health Canada on the development of a reference group for women and HIV.
7. Prisons - A meeting between Council members and representatives from Correctional Service of Canada will take place in November 1999.
8. Canadian Institutes for Health Research (CIHR) - Council is considering recommendations regarding HIV/AIDS and CIHR.
9. Drug approval - Council is represented as an observer on the Therapeutic Products Program Working Group on HIV/AIDS and supports the recommendations of the Working Group to the Minister of Health
10. Corporate involvement - This remains an issue for Council
11. Aboriginal issues - Council dedicated a complete day of its September 1999 meeting to issues regarding HIV/AIDS and First Nations, Métis, and Inuit peoples. The Special Working Group on Aboriginal Issues will be making recommendations to Council.
12. Reconstitution of Council - The letter from Council on yearly reconstitution of Council was sent to the Minister of Health
13. Lapsing CSHA funds - All lapsing funds from the CSHA in fiscal year 1998- 1999 were rolled over into 1999-2000.
14. CSHA allocations - The Monitoring and Evaluation Committee will be presenting on this issue at the Council Meeting in November, 1999.
15. A policy position on honoraria has been developed for Council's consideration.

Key Accomplishments of Council

The Ministerial Council redrafted its Terms of Reference after considerable deliberation on the work in which Council needed to engage.

The Ministerial Council played an influential role in the establishment of the Therapeutic Products Program Working Group on HIV/AIDS and sits on this Group as an observer.

The Council played a decisive role in the decisions with respect to unspent Strategy funding in the 1998-1999 fiscal year. Through its discussions with Health Canada, the Council was a full partner in the decision about what to do with the $2.5 million in unspent funds, and in the eventual decision that $1.8 million be rolled over into the next fiscal year.

The Council was instrumental in addressing quickly, once the full facts were brought to its attention, the problems with the National Health Research and Development Program's (NHRDP) community-based and Aboriginal research programs. The result has been NHRDP's development of an action plan which incorporates many of the Council's suggestions.

The Council has expressed its desire to see a separate Institute for HIV/AIDS research integrated into the new Canadian Institutes for Health Research.

The Council has highlighted in a clear way to the Minister its concern about the urgency of addressing the issue of Aboriginal peoples and HIV/AIDS, through its November letter to Minister Rock, by creating a Special Working Group on Aboriginal Issues (SWGAI), and by devoting a day for discussion of HIV/AIDS and Aboriginal peoples at its September 1999 meeting. The SWGAI has begun to work on identifying projects and creating linkages with Aboriginal groups working under the Strategy.

Council's Visioning Group has worked on creating a vision statement for the Ministerial Council.

The Championing Committee's research and proposed recommendations on women, prisons, research, drug approval, and involving corporate Canada in the cause of HIV/AIDS is a significant contribution to moving these issues forward.

Through its Monitoring and Evaluation Committee, the Council continues to have an influence on the development of the Government Performance Reporting Framework (also referred to as the public accountability framework) and the Non Governmental Performance Reporting Framework for the CSHA. These frameworks would provide information to many stakeholders on the implementation and outcomes of the Canadian Strategy on HIV/AIDS.

The Council, through its links to the Federal/Provincial/Territorial Advisory Committee on HIV/AIDS, continues a useful dialogue on important pan-Canadian issues.

Advice Provided to Health Minister Allan Rock

Council was instrumental in advising the Minister to set up a multi-stakeholder working group to examine the issue of slow HIV/AIDS drug approval.

Council redrafted its Terms of Reference and forwarded them on to the Minister for approval.

Council highlighted the urgency of HIV/AIDS and Aboriginal communities and the special responsibility that the Canadian Government has to Aboriginal peoples.

Council provided input and advice to the Minister in respect to World AIDS Day events (December 1, 1999).

Council sent a letter to Minister Rock expressing its concern about the potential for unspent funds during the 1998-1999 fiscal year and the need to roll over lapsing dollars into the next fiscal year.

Council advised the Minister on the yearly reconstitution of Council (appointment of members, turnover of members and appointment of Co-Chairs).

Council advised the Minister to set up a Task Force on Women and HIV/AIDS under the Canadian Strategy on HIV/AIDS.

Council highlighted the immediate need to act on implementing the recommendations from the Canadian AIDS Society and the Canadian HIV/AIDS Legal Network's Report on Prisons (1996).

Council requested the setting up of the National HIV/AIDS Research Council to provide strategic direction to research funding and action in Canada.

Council advised the Minister to set up a separate Institute of Health for HIV/AIDS under the Canadian Institutes of Health Research.

Council again highlighted the slow drug approval process (citing specific examples) in a letter, approved at its March 1999 meeting.

Closing Thoughts

The former Ministerial Council Executive Committee had its final meeting on May 21, 1999, chaired by Dr. Dominique Tessier. Minutes of that meeting provide further detail on all issues which were being followed on behalf of Council to the end of May 1999. All letters of advice to Minister Rock had been drafted and forwarded as directed by Council during its March 1999 meeting. The Executive was advised by Health Canada officials that it had kept to its budget during this fiscal year (total annual operating budget for the Ministerial Council is $174,000). It was estimated by Health Canada officials at this meeting that Council had potentially come in under budget and was underspent by no more than $4,000. A few outstanding issues on the Executive Committee's agenda in May 1999 were to be followed up by action appropriately assigned to either the Council secretariat or Health Canada officials in the interim while awaiting Minister Rock's re-appointment of Council members. When the new Council and Co-Chair were officially announced, Health Canada coordinated a teleconference during which a hand over of ongoing issues to the new Co-Chairs was achieved.

I would like to thank all the members of Council for what I consider a successful year. It seemed difficult at times but not until this moment have I been able to reflect on all that we achieved together. Much thanks to my fellow colleague and Co-Chair, Dr. Dominique Tessier, the secretariat (Janet Dunbrack and Douglas Connors), and all the support given by the staff at Health Canada. Finally, I would like to thank Minister Allan Rock who continues to listen and respond to our concems and advice.

Respectfully submitted,

Gregory Robinson,
Ministerial Council on HIV/AIDS Co-Chair, 1998-1999

APPENDIX A

MINISTERIAL COUNCIL ON HIV/AIDS
TERMS OF REFERENCE

MANDATE

To provide advice to the Minister of Health on pan-Canadian aspects of HIV/AIDS

ROLE

16. To monitor and evaluate the implementation of the Canadian Strategy on HIV/AIDS and to support its effectiveness and its flexibility to meet changing circumstances.

17. To be a champion to ensure that current and emerging issues are being adequately addressed.

18. To be visionary in providing long-term directions.

APPENDIX B

MINISTERIAL COUNCIL ON HIV/AIDS
STANDING COMMITTEE PRIORITY ITEMS 1998/1999

MONITORING AND EVALUATION

1. Need for evaluation of existing practices and strategies
19. National Aboriginal AIDS Strategy
20. Inventory of Aboriginal services across jurisdictions
21. Evaluation of funding of approved projects
22. Delay in implementing Strategy has led to loss of momentum
23. Ensure balance of all aspects of care (medical, psychosocial, complementary, etc.)
24. Coordination of research
25. Balance of social and medical research
26. Ownership of research, balance between community/researchers

CHAMPIONING

1. Integrated planning
27. National Aboriginal AIDS Strategy
28. National standards of care
29. AIDS falling off agendas of media and public
30. Ghettoization of HIV
31. Broaden scope of care and prevention to include all determinants of health
32. Establish dialogue with affected communities
33. Return of old public health tradition works against approaches such as harm reduction; punitive mentality
34. HIV funds paying for other issues associated with new populations
35. Lack of success in developing HIV message and delivery
36. Drug access/approval
37. Drop in public support/interest
38. Correct public misconceptions about HIV

VISIONING

1. Person living with HIV is at the centre
2. Integrated planning
3. National Aboriginal AIDS Strategy
4. AIDS falling off agendas of media and public
5. De-ghettoize HIV
6. Equity, especially for marginalized groups
7. International: what happens at pan-Canadian level has global impact and vice versa
8. International issue of drug access
39. Drop in public support
40. Ownership of research; balance between community/research
41. Vaccine

APPENDIX C

MINISTERIAL COUNCIL ON HIV/AIDS
VISION STATEMENT

In order to build a society that can eradicate HIV/AIDS, the Ministerial Council on HIV/AIDS believes that:

• empowerment of all communities affected by HIV/AIDS
• respect for dignity and human rights
• cultural development; and
• knowledge

are the keys to success

The Ministerial Council will listen and advise on policy and practices to ensure success.