1. Caribbean Health Leadership Institute Cohort 5 Group 5 – Action Learning Project 2012 - 2013 Group 5 – Action Learning Project 2012 - 2013

2. The Team

3. Acknowledgements Dr. Ellen Grizzle (Mentor) Dr. Carnille Farquharson Dr. Donna-Michelle Royer-Powe Ms. Ferdinia Carbon Ms. Joy Crawford Mr. Fazad Mohammed All Survey Respondents Ministries of Health Families and Friends MSD

4. OUR TRUTH

5. Action Learning Project (ALP) Assignment How can ‘treatment as prevention’ improve the outcome of our HIV programmes? Are government and private practitioners able to pursue this option given current resources?

6. Action Learning Project Objectives To define ‘ treatment as prevention’ To identify a target group for intervention To facilitate leadership development opportunities To create a highly effective strategy for cross cultural collaboration

7. Treatment as prevention Relatively new HIV/AIDS management concept Describes the practice of placing HIV positive patients on anti-retroviral medications (ARV’s) regardless of CD-4 or viral load levels. The treatment is to be maintained life-long.

8. Treatment as prevention Studies have shown that this reduces the viral load in the blood and sexual secretions of the positive person and essentially eliminates transmission to their non-infected sexual partner, thus reducing the rate of new infections by up to 96%. Theoretically should significantly impact the disease regionally [and worldwide] by initially zeroing the rate of new infections and possibly eradicate the disease

9. Attainable To achieve this level of success, however, several parameters would have to be fully in place. Identification of all HIV positive persons through universal testing Full disclosure to their sexual partners Voluntarily starting and maintaining life-long ARV therapy Complying with routine monitoring.

10. Attainable Full and easy access to all necessary medications, routine testing, counseling and education. Sustained financial source that would provide all necessary funding for supplies and human resources Implementation of new Governmental legislation and policies or at the least changes in existing ones.

11. Attainable Finally, during the course of therapy there should be minimal to no development of resistant strains in an individual client. Eradicating the epidemic of stigma and discrimination – a barrier to all of the above

12. More questions than answers Can national budgets provide the full financial support Can legislation be adopted and enforced for mandatory testing and disclosure without infringing on individual human rights and freedom of choice.

13. What’s Reasonable It is recognized that treatment as prevention is difficult if not impossible to institute at the population level given the current resources and environment in the region at this time. However, it is reasonable to presume that certain subpopulations may be more open to and compliant with this concept.

14. What’s Reasonable In recent years, the [female] childbearing age group also represents the fastest growing segment of newly diagnosed HIV infections in several regional countries More financially feasible to support a smaller group One that would theoretically have a significant impact on HIV/AIDS prevalence. This sub-population can be more reasonably accessed via clients that routinely present for ante- natal care in established Maternal and Child Health Programs in the four represented countries.

15. The Prevention of Mother to Child Transmission Programs (PMTCT) already established in these countries. Provides treatment, education and counseling to reduce vertical infection from mother to baby. By extending this treatment program, being more inclusive of the [negative] sexual partner and maintaining them in the system long-term, theoretically should begin to stabilize and then reduce the transmission rate in the heterosexual population.

16. Our group proposed to develop a patient passport that outlines a more holistic patient-centered approach. Guide and involve clients more actively in their care motivate increased compliance with the treatment protocol and encourage continuous life-long therapy post delivery. Geared towards the patient during pre-conception counseling, during pregnancy and continuing long- term post-delivery

17. Very importantly would also include information for the sexual partner(s). We also plan to determine the level of knowledge private Obstetricians have of “treatment as prevention” and also their level of readiness to “test and treat” in the private sub-population. This would be essential as their patients represent the total national intervention group.

18. Goals and Objectives To determine the feasibility of regional governments ability to provide treatment as prevention to the total at risk sub-population, including their partners with current resources, would TasP be sustainable in the long- term To assess the readiness of [private] practitioners to implement ‘test and treat’ practices/programs in their offices in an effort to provide full-nation obstetrical coverage. To determine the main factors limiting or preventing HIV/AIDS ante-natal patients from accessing and being fully compliant with ARV treatment and also continuing them long-term post-natal. Finally, as a major objective of this program, we would document our individual leadership journey in the real-world environment and how our skills have developed, or not, during this time

19. Methodology

20. The Journey Action Learning Group was set up Group was named (CHLI5five) and logo developed Communication between group members was established using Skype, Blackberry messenger and Google group. Weekly group meetings were held at a designated time and duration with a new moderator at each meeting Members’ strengths were highlighted

21. The Journey Members were assigned roles for ALP Target population was determined Questionnaire was developed using PMTCT Policy Meetings were moved to monthly basis Questionnaires were administered and submitted for analysis Data analysis was prepared and report formulated. Information brochure developed for target

22. chli5five@googlegroups.com

23. Literature Review and Key Partners Interviews To determine for example, the availability, cost and financial source of ARV medications and related HIV/AIDS related testing and counseling resources Initial information gathering was used to develop our written protocol Used to develop a survey on “Knowledge, Attitude and Practice of Treatment as Prevention in local Obstetricians (O&G)

24. Research - Methodology Self administered questionnaire 40 questionnaires were distributed and a total of 28 questionnaires were returned (70% response rate)

25. Research - Instrument Self administered questionnaire – Comprised of combination of dichotomous and open ended questions. – No names or identifying marks were recorded – Questionnaires were delivered to eleven different institutions across four countries

26. Research - Challenges Time frame – Time constraints allowed for a small sample size – Due to competing commitments group members were strained to execute data collection Geographic Spread of team members – Team members were present in 4 countries leading to breakdown in communication Lack of willingness of respondents – Many respondents did not see the project as a priority and refused participation in the study

27. Research - Benefits Geographic Spread of team members – Team members were present in 4 countries allowing for semi-regional review Instrument used – A self administered questionnaire allowed for respondents to respond on their own time in confidentiality reducing bias – Cost effective

29. Respondents Demographics  Length of practice – all > 5years (approx. 50% > 10 years)  Majority of the respondents are familiar with the concept of TasP  It can help manage the rates of HIV infection – 93% agreed  Encourage the patient to disclose to her partner and to have him tested for HIV – 100%  Refer the HIV positive patient for available social and psychological support – 89%  Provide some form of counseling at the time of testing and diagnosis – 64%  Counsel HIV positive females wanting to become pregnant about the implications of transmission to her uninfected partner - 85%  Counsel HIV positive females re the benefits of ARV prophylaxis to reduce transmission – 85%.

32. The change process As part of the change process we wanted to develop a tool that we felt may begin to address part of the issue of enhancing compliance amongst the HIV/AIDS obstetric [heterosexual] population and that would begin to promote and enhance long-term post-natal therapy as well as partner therapy if necessary.

33. Recommendations Development of IEC materials for patients about their treatment options These materials can help facilitate further dialogue between doctor and patient regarding treatment options It can also be used as a conversation starter between couples regarding their unborn child

35. Stakeholders Feedback In Dominica, - a volunteer with the AIDS desk involved with testing and counseling. very appropriate for Ante-natal, Post-natal, Family Planning and Child Care clinics. The Coordinator of the Health Promotion Unit good and recommended that it should include grandmothers

36. Stakeholders Feedback In Jamaica, - a group of 30 HIV positive mothers who are currently using PMTCT services or were within 1 year post-natal happy it included information for ‘baby fathers’ that it could help start conversation with doctors because “mi nuh know what mi must ask dem” colourful and nice that they can carry it home without disclosing status because it gives information whether patient is positive or not. It was also noted that at that site there was no currently available handout addressing PMTCT

37. Stakeholders Feedback In Jamaica, - staff at the St Jago Park Health Centre, adherence counselors and contact investigators and attendees at the clinic all found it useful and informative.

38. Stakeholders Feedback In Trinidad, - patients at the PMTCT clinic as well as the Medical Research Foundation. They said it was very informative liked the picture on the front, felt the brochure was discrete liked that it also targeted the partners as well Too wordy.

39. Stakeholders Feedback In the Bahamas, - the HIV ante-natal nurse awaiting review. (Nurse re-locating, awaiting replacement)  Overall, the pamphlet appears to be positively accepted in its present format.

40. Impact and Transition Plan Although we are happy with the responses received, we do recognize that it is a small sample for both the survey and the pamphlet. It would appear, however, that physicians are open-minded and educated regarding treatment as prevention and are at the least willing to advise the patient to test, start treatment, to disclose to partner and give adequate initial counseling or referral as needed for further management.

41. Impact and Transition Plan Possible Pamphlet Partners ‘medication support group’ and a PMTCT Prevention Programme that sits in the Jamaican National HIV and AIDS Programme The four represented countries have a Ministry of Health that can be approached to view and endorse the product. Placement in all the Maternal and Child Health and Family Planning Clinics. The private physicians caring for ante-natal patients will also be approached to have the pamphlets placed in their private offices, starting with the ones involved in the survey. An organization, ‘Inmed’, who are about to launch a project with teenagers in Trelawny, Jamaica regarding safe sex and HIV

42. Dissemination or Publication In the Caribbean region there are opportunities for dissemination. The initial findings can be presented to all Ministries of Health to get funding for printing and distribution to the Community Clinics. In the larger Caribbean Islands we can seek to have it presented at the local Medical Association Meetings or poster at annual conferences. The University of the West Indies also sponsors and supports regional conferences and the opportunity can be used to speak to other countries and territories to use the pamphlet in their jurisdiction. UNESCO and UNICEF funds youth health material production and dissemination and are funders of NGO, EVE for Life, currently runs a program for 36 pregnant teens/adolescents in rural Jamaica Post the pamphlet/information on related websites for general viewing. The civil society forum on HIV and AIDS in Jamaica has a community of over 70 NGO’s, CSOs along with other partner websites which can access the information.

44. Lessons Learnt from ALP As with any project there were challenges, individually and collectively, which our group chose to view as opportunities for leadership development. We found that we all stepped up to the plate and it was curious how our individual strong suits allowed for a well-balanced team.

45. Lessons Learnt from ALP Flexibility and Compromise Patience Difference between assertive and aggressive Effective use of limited resources Innovation (overcoming barriers to communication) Sensitivity to cultural differences Time management

46. Lessons Learnt from ALP Productivity comes from commitment not from authority – W.L.Gore Our greatness lies not so much in our being able to remake the world as in being able to remake ourselves - Gandhi

47. “Journey Thoughts” “Good group work makes hard work easier” “Good group dynamics, working with people strengthens and weaknesses” “Distance is not a limitation to communication” “Use your resources wisely and effectively” “ In our one-ness lies our success”