Fear of stigma and discrimination, a hindrance to HIV care

When we speak about HIV today, there still exists some element of fear and uncertainty by many individuals towards People Living with HIV (PLHIV). Even with the vast wealth of information and education, some persons continue to stigmatise and discriminate against PLHIV.  This poses a significant challenge for navigating and retaining persons in HIV care and treatment programmes.

How do we help PLHIV to deal with stigma and discrimination? We simply continue the fight with counselling, continuous education, and equipping persons with the correct tools such as information on civil society organisations that provide specific help and guidance on how to deal with discrimination.

From the beginning of the process, this fear of stigma poses a challenge to get persons to participate in free HIV testing. They fear being identified and discussed. For persons who have tested positive, the problem becomes more significant. They fear being identified with the HIV clinic, and the thought of family, friends and coworkers being made aware of their diagnosis can affect their enrolment in treatment. Because of this reality and their need for privacy coupled with their self-guilt and shame, we face high rates of non-adherence to treatment, dropouts and loss to follow-up.

We must understand the impact this situation has not only on the individual but on society. Only then can we fully grasp the extent of the damage that is created as a result of stigma and discrimination against PLHIV.

The fear of being stigmatised and discriminated against is real; we, therefore, have to continue to empower PLHIV to deal with it, and to know that there is hope and help beyond that situation hence equipping them to be physically and mentally healthy.

“My experience has energised me to improve my own programme”

PANCAP facilitated a South-South Learning Exchange in the Dominican Republic in February 2020.  With a history of success with two previous events, six OECS countries were selected to be part of this sharing of best practices and Saint Lucia is grateful to have been a willing participant in this exercise.

When I learnt about the learning exchange, I did not know what to expect.  The Integral Orientation and Research Center/Centro de Orientación e Investigación Integral (COIN) welcomed all twelve of us into their safe space for a week and the Executive Director of COIN, Santo Rosario, paved the way for us to visit many places.

We visited the Ministry of Health and met the Coordinator-General of the HIV and AIDS programme, Dr Luis Ernesto Feliz-Báez.  Dr Jose Ledesma, enthusiastically described the successes of their PrEP trial.  The visit to the National Council against HIV and AIDS (CONAVIHSIDA) was very illuminating.  It provided insight into the composition of the Council and how it works with representative member ministries as well as non-governmental organisations (NGOs).

COIN informed us about their programmes and activities as well as the linkages they have with other governmental agencies, non-governmental organisations and civil society.  We visited TRANSSA (Trans Siempre Amiga), CVC (Caribbean Vulnerable Communities Coalition), IDEV (Institute of Virological Studies) and REDOVIH (the network of People Living with HIV – PLHIV).  We had access to a wealth of information that highlighted best practices in the Dominican Republic.  It also highlighted areas where there is much work to be done.

I was very impressed with the variety of services offered at both COIN and IDEV and the fact that they can refer clients to other agencies when necessary.  TRANSSA, CVC, COIN and CONAVIHSIDA all highlighted incidents of stigma and discrimination involving PLHIV and LGBTQI persons.  Also, there are many unsolved homicides of transwomen and there is a need to address the basic needs and education of approximately 700 youth who are in detention centers.

My experience has energised me to address some issues within my programme. I hope that the programme will be able to establish a relationship with sex workers.  They are a “hidden” population in Saint Lucia.  This task must be accomplished in conjunction with the island’s only LGBTQI organisation, “United and Strong Inc.”  There has to be a Pre-Exposure Prophylaxis (PrEP) sensitisation exercise before there can be a decision on a trial roll-out of PrEP.

I would like to thank PANCAP for the opportunity to have been a participant in this exercise.  I am grateful for the warm welcomes extended to all of us by all the institutions we visited, as well as the willingness to speak freely about their organisations and the work that they do.  Thank you to Timothy and Shanti for your support throughout the trip.  Thank you to my colleagues for having made the experience memorable and enjoyable.

A special thank you to Santo Rosario and Vanessa Rosario and all the COIN staff who opened their space to us and made us all feel very welcome.

“If we all stand separated, we will fall separated, but if we stand together, we will thrive together”

The Learning Exchange allowed me to explore the possibility of replicating best practices and evidence-based interventions from the Dominican Republic in the OECS countries.  Particularly strategies related to HIV prevention, PrEP, systems for dealing with intravenous drug use habits and changing legislation to allow key populations to access health.  It was evident that these changes and approaches are propelling a new and dynamic approach to HIV prevention in the Dominican Republic.  It is worth exploring whether these approaches can be utilised effectively in smaller Caribbean islands.

During the learning exchange, I noted that tackling vulnerable populations with capacity building, advocacy, and social and behavioural change communication is making headway in controlling the epidemic.

I was particularly impressed with the provision of HIV and other health services for migrants.  This is an approach that OECS countries should consider implementing.  The Caribbean landscape as it relates to migration is slowly changing, and there is the need to establish similar practices and prevention strategies for the region. We are slowly shifting from being isolated territories, but one cultural, social and economic region.  The evidence of movement of people from one country to the other signifies a changing paradigm in the region. If we all stand separated, we will fall separated, but if we stand together, we will thrive together.

“The learning exchange was nothing short of eye-opening”

The learning exchange brought to mind a quote I have heard time and time again, “everything in its own awesome timing”. I have had the desire to further my involvement in Civil Society. Still, I feared the unknown; I was somewhat intimidated by the extra work it involves but this experience has given me the motivation to get it done. My attendance at the learning exchange has been nothing short of eye-opening.

The capacity building was outstanding, the networking timely, and the overall experience was a humbling one. The field visits which showcased the work being done in the Dominican Republic were outstanding and I am grateful to the staff and volunteers who work with the clients.

I especially enjoyed visiting the Dominican Institute of Virological Studies (IDEV) clinic where they have a massive operation. The presenters’ strategies and methods of work were clearly illustrated.

It is my hope that each member of the visiting team observed at least one best practice that we can adapt and improve the services to our clients. If we continue to work together and use these practices, I see us moving closer to achieving the 90-90-90 Targets in the OECS!

“The lesson learnt from the exchange is that CSOs should be integrally involved in the HIV response”

The South-South Knowledge Exchange was truly an exchange.  The experience provided a different view of the robust efforts of civil society organisations (CSOs) that advocate for the rights of their communities and support vulnerable populations.

I love the Dominican Republic’s civil society organisations’ contribution to the HIV response.  I admire how visible and open they are about their issues and provide solutions to help fight HIV and stigma in their communities. Their commitment to work and the communities they serve is something to be emulated.   

The collaboration between Integral Orientation and Research Center/Centro de Orientación e Investigación Integral (COIN), CONAVIHSIDA, CSOs and other partners showed the strength and commitment of the people of this country.

It was evident that COIN, Ministry of Public Health and the other institutions that we visited were happy to share their best practices and to highlight the areas where more work needs to be done.

At times, seeing all the strengths of their HIV response made the work at home that we will have to do seem like a mammoth task.  However, as strong Caribbean people, we must keep on building and learning from each other.  We will find ways to adjust our approach to achieve the success of building the voices of our CSOs and achieving the 90-90-90 Targets.

The lesson learnt from the exchange is that CSOs should be integrally involved in the HIV response.  We must ensure that their voices are heard. I say KUDOS to all including COIN, especially the staff of the COIN Clinic and COIN Observatory, Ministry of Public Health and Social Assistance, Transsa, Caribbean Vulnerable Communities Coalition (CVC),  Institute of Tropical Medicine, Institute of Virological Studies – IDEV and REDOVIH.

The experience was as holistic like the services provided at the Instituto Dominicano de Estudios Virológicos (IDEV) and COIN, which included PrEP, HIV rapid testing and approaches to deal with human trafficking.

Finally, the people are very friendly and the black beans and rice (muy deliciosa).

Thank you PANCAP and to the Ministry of Health in my country, Saint Kitts and Nevis for the beneficial opportunity.  My fellow OECS colleagues (colegas), you were a great bunch!

“Strengthening Services for Key Populations in Saint Lucia with lessons learnt from the Dominican Republic”

The PANCAP learning exchange provided the opportunity for sharing of best practices and knowledge exchange from the various Caribbean countries represented.  It also provided the opportunity for persons to improve their skills and replicate best practices highlighted by our colleagues from the Dominican Republic. With the information obtained during the learning exchange, I am now able to return to my island with my co-partner to start developing strategies to focus on critical areas where we were underperforming.  This includes implementing a system to better inform our sex worker population as we continue fighting for an HIV free Caribbean.

I was particularly impressed with the clinic at COIN.   A safe space has been strategically set up to ensure that persons who use the site clinic can access the services without their identity being compromised. Two access points have been identified to accommodate clients who do not want to be seen by other persons using the space.

Additionally, the clinic has been identified and labelled as a confidential room and unless requested by the client, only one person is allowed inside with the counsellor or tester at a time.

One of the ideas I noted from the learning exchange was modifying the hours of operation at the clinic to accommodate more persons who may not feel comfortable accessing the space during the day.  One clinic we visited indicated that their testing was conducted during the evening to assist persons who work and those who prefer not to be seen.

Since seeking sexual and reproductive health services is still considered a taboo, I think incorporating opening hours during the evening will ensure that more persons can access services.

Persons utilising the safe space also have an opportunity to receive sexual and reproductive health education and items to prevent the spread of Sexually Transmitted Infections (STIs) such as condoms (both male and female) and lubricants. To further facilitate and ensure confidentiality, agreements have been signed by members of the organisation which prohibit disclosure of any information about persons using the space.

Some of the strategies identified to enhance reducing HIV infections include continuous and periodic training sessions for testers in sexual and reproductive health education, including modes of transmission, various STIs, especially those that are prevalent within the population we serve. As such, we intend to replicate this best practice at home.  We also plan to continue building our partnership with the Ministry of Health and Wellness to allow for increased coordination during outreaches.  This approach has proven successful for our colleagues in the Dominican Republic.

“I am leaving the Dominican Republic motivated to continue to work towards an HIV programme which will meet the needs of key populations.”

What an awesome learning experience, seeing in action government, non-governmental organisations (NGOs), civil society organisations (CSOs) working in a harmonised partnership on an effective response to HIV and the provision of services needed and required by People Living with HIV (PLHIV).  This is one of the most important lessons that I am taking away from the South-South learning experience to the Dominican Republic arranged by PANCAP in collaboration with Integral Orientation and Research Centre/Centro de Orientacion e Investigacion Integral (COIN). The learning exchange was supported with funding from the United States Agency for International Development (USAID).

I was literally blown away when I visited the National AIDS Programme (NAP) and the Ministry of Public Health and Social Assistance. I was informed that the government had a mechanism in place for social contracting with CSOs. They can access part funding by writing a proposal and meeting specified requirements for the services they offer.

Additionally, the CSOs who are awarded a grant can work with other sub-recipients and sub-sub recipients to reach key populations where they are most comfortable accessing services.

Further, the CSOs are trained on project management, given guidance and are held accountable through yearly audits and have to report to the Ministry on the activities conducted.

The one-stop services offered to locals and migrants at COIN, and the Dominican Institute of Virological Studies (IDEV) were also impressive. In one visit, the client can have access to a multi-disciplinary team of specialists including medical doctors and laboratory tests such as HIV, VDRL, HB, Hepatitis B and C, liver and kidney functions, etc.

Clients also have access to Antiretrovirals, psychosocial services, gynaecological and urological examinations. Treatment for sexually transmitted infections (STIs) and other infections are also done. In addition, clients can access legal services. Other services include anal care, Tuberculosis (TB) prevention and control, syringe exchange programme, Haitian Migrant HIV and STIs services, migrant female sex workers support, and a support group for babies who were born HIV positive and are now parents of HIV negative babies.

Further, there was a presentation done by Dr Robert Paulino, Director del Instituto de Medicina Tropical and Salud Global Universidad Iberoamericana,  on the care and treatment given to persons at risk for contracting HIV and the Pre-Exposure Prophylaxis (PrEP) services offered. This system is based on referral. The individual will be interviewed and a risk assessment conducted. They are then sent for the relevant laboratory investigations such as HIV, Hepatitis, VDRL, liver and kidney functions tests. If the HIV test is negative, then PrEP will be initiated. There will be a “follow up” with the patient 15 days after commencement of treatment then every three months.

There were some challenges experienced by PrEP implementers in the Dominican Republic, which I would need to consider when implementing my programme. These are ensuring that the clients understand the importance of condom use during PrEP in preventing the transmission of other STIs and the importance of immunising against Hepatitis B.

The Dominican Republic HIV response also had agencies which enabled key populations to report on issues affecting their human rights and to seek redress when their rights are abused. Two of the agencies visited were Caribbean Vulnerable Communities Coalition (CVC) where I learnt about the Shared Incident Database (SID) which facilitates the reporting of human rights abuses by key populations and Transsa, a CSO group, which provides services for transwomen.

Throughout the five days, we also learnt about the progress of each OECS country in achieving the 90-90-90 Targets. We realised that we share similar strengths, weaknesses and challenges, but we are resolute in making sure that our countries reach the 90-90-90 Targets by 2025.

The South-South learning exchange gave me a clear view as to where my country’s programme needs to go and clear steps on how to get there through the forming of strong linkages and alliances with NGOs and CSOs.

I am leaving the Dominican Republic motivated to continue to work towards an HIV programme which will meet the needs of the various populations who are in need of HIV prevention, care, treatment and support services to reduce the negative impact of HIV in Antigua and Barbuda.

“I am excited to see what can be done about anal health services within the OECS”

The PANCAP South-South Learning Exchange promised to be an interesting event, and I cannot say that I was disappointed. HIV education and programming has been part of my work at GrenCHAP since 2018 and I have been especially interested in this and other sexually transmitted infections (STIs) for quite some time.

Though HIV is a big part of the work that I do the other STIs have always been of great interest to me. It is notable that because of increased HIV awareness the transmission of the virus has decreased across the globe. However, this focus has made education for other STIs less available and has resulted in an increase in the rates of these STIs.

Our trip to the Dominican Institute for Virological Studies (IDEV) was a fascinating experience, particularly regarding the information we received on Human Papillomavirus contraction in the anal cavity that can lead to cancers in that part of the body. HPV, though very common, is a less talked about infection but has that detrimental effect of causing cancer.  Witnessing how it is treated within the facility and how these services have been made available for individuals who experience these issues was one of the best things I have seen on this learning journey. The priority placed on other STIs allows for a better understanding of the risks associated with them and helps individuals be more proactive with protecting themselves.

Overall the experience was an enlightening one. Though I am not a clinician, I am excited to see what can be done in terms of anal health services within the OECS as we try to make other STIs a priority.

What a Farewell from the PANCAP Coordinating Unit!

It was an intimate gathering on 24 February 2020, as staff of the PANCAP Coordinating Unit and a few members of the wider CARICOM Secretariat celebrated soon to be former Director, Mr Dereck Anthony Springer, at Parc Rayne, East Bank Demerara, Guyana.

The tributes were many.  In speeches and statements that were candid reflections of the man, his measure and message.  In songs and serenades by his staff led by Nickosha DeNobrega and later the great Mariah Carey, the lyrics so profound and beautiful that even the discordant chords, the contribution of the gathering, were not a distraction.

Tributes came from all levels of staff of the PCU and from the wider Secretariat with whom he has worked closely. They included the CARICOM Deputy Secretary-General, Dr Manorma Soeknandan and Dr Douglas Slater, Assistant Secretary-General.

They came also from those he continues to work with in a commitment to turn back the tide of the epidemic and to ensure it does not stay on shore. Among them, Dr Edward Greene, former Assistant Secretary-General for Human and Social Development, CARICOM Secretariat and UN Secretary-General Special Envoy for HIV and AIDS in the Caribbean.

All contributions highlighted who Dereck Springer was and is, in both professional and personal capacities They all proclaimed him an exemplary leader who led by example; a dedicated, disciplined and decisive leader; and “a man of the time, in the time and for the time” a fitting title of a booklet with glowing tributes from a wide cross-section of PANCAP partners that was presented to him.

A stunning portrait in the true likeness of Dereck was presented to him and it was fitting that the artist, Compton Babb, was a special guest, and witnessed the adulation for his work from Dereck and all those in attendance. It was indeed a wow! factor.   It preceded Dereck’s eloquently comprehensive “thank you” to every member of his staff and all those present.

This memorable event basked in an atmosphere consumed with appreciation, camaraderie, jolly banter, great cuisine and a joie de vivre. It was tinged with a bit of raw emotion, the reality that after all, this was a farewell. It was a beautiful morning. The photos attempt to tell part of the story; the whole story, forever hidden in the hearts of all who were a part.

Caribbean Congress on Adolescent and Youth Health (CCAYH)

I question numerous life decisions I make but attending this congress is not one of them. The entire experience was high energy, building momentum from day one. Sharing the same space with so many influential and dynamic young and “youngish” leaders across the Caribbean really made me more receptive to differences in ideas, opinions and circumstances.

The youth congress facilitated communication between the youth and the policymakers. The forum pioneered a new dynamic for discussions about youth health involving youth at every stage. It was a catalyst to drive the change in the Caribbean’s approach to youth and adolescent health issues. The congress was extremely productive with the creation of a roadmap for youth health, detailing its goals and objectives.

Being the first of its kind there were a few hiccups but the content, engagement and networking made up for it. The plenary sessions captured my attention the most since it was an early morning session, and my mind was still fresh. It allowed for a holistic discussion with all of the participants, and this invoked a sense of inclusivity at every level.

This congress was a great experience to not only share my ideas and learn from others but to ensure the information gathered would be disseminated to our respective peer groups and organisations.