Q&A: Future of HIV Care
Feature: Love Foundation, Persons with HIV/AIDS Rights Advocacy Association of Taiwan (PRAA) & Taiwan Lourdes Association
COVID-19 is quickly reshaping HIV services around the world. To continue meeting the needs of people living with HIV/AIDS (PLWHA/PLHIV), the necessary growth of the healthcare sector must not come at the cost of patient-centered approaches to HIV care.
With growing recognition that community responses must play an increasing role in addressing the epidemic in the years ahead, the COVID-19 pandemic provides an opportunity to reassess the current health model in HIV care where community-based organizations continue to be instrumental to the success and sustainability of the global response to HIV.
We spoke with Taiwan Lourdes Association, Love Foundation (Thailand) and Persons with HIV/AIDS Rights Advocacy Association of Taiwan (PRAA) to share with us their views on the future of HIV care.
Q: As an organization that is in close contact with the HIV/AIDS community, what are some of the HIV care interventions or components you believe are missing in the HIV care continuum in Thailand and how will they contribute to the current healthcare model?
Love Foundation: We believe online interventions are critical in the HIV care continuum in Thailand to reach key populations within testing (i.e. HIV counseling and testing by lay providers) and retention (i.e. encouragement of treatment adherence and regular testing for those HIV negative). Online modalities have been advantageous for outreach and recruiting, while treating (ART dispensing) and prevention (i.e. condoms) can be enhanced as telehealth capabilities advance.
For online reach and recruitment, the Love Foundation will pilot a telehealth program in two private clinics, and two community-led clinics and, if successful, the platform and strategies will be scaled up. On the testing and treating front, Thailand still has a large number of people who are HIV positive that have not started treatment; making ART initiation a challenge for the infected population. In this context, public awareness of the U=U concept becomes paramount, as we need more Thai people to understand that being undetectable will eliminate the risk of transmitting HIV to others.
The global pandemic has certainly restricted physical contact, but we see examples where advanced telehealth capabilities could allow for self-test kits to be sent, lay-providers to connect with patients and preventive treatments to be delivered.
Q: The COVID-19 pandemic has in some ways underscored the significance of telehealth and telemedicine solutions. How do you think the telehealth / telemedicine solutions could meet the needs of people living with HIV/AIDS (PLWHA) along the care continuum?
Lourdes: Now that people are more acquainted with online platforms, medical services, paired with technology, can help treat people who are unable to physically attend their sessions. However, we must ensure that the quality of medical procedures and the protection of patients’ privacy are maintained.
Telemedicine could increase accessibility for people in remote villages with insufficient medical resources and provide immediate treatment consultation for chemsex and other comorbidities of specific ethnic groups. In the past, Lourdes has successfully used remote platforms to facilitate the dialogue between patients or patients with the public. In addition, telemedicine provides a single platform where different professional care teams can collaborate and perform consultations that require a cross functional team and reduces the cost of autocorrelation during treatment.
Love Foundation: We see a huge opportunity to partner with community-led clinics in Thailand to offer a platform that facilitates online calls, consultations, and appointment bookings. The platform is intended to alleviate travel burden for people who live far away from city centers and the clinic facilities, including those in metropolitan Bangkok who face transportation challenges when travelling across town. People seeking care can access a 30-minute consultation without waiting time and transportation costs; reducing the communication gap between doctors and patients. Eliminating these barriers can help reduce anxiety and obstacles for people to seek mental health care.
The global pandemic has restricted physical contact, but advanced telehealth capabilities could allow for self-test kits to be sent, lay-providers to connect with patients and preventive treatments to be delivered.
Q: Community-based organizations (CBOs) are critical for many grassroots outreach and HIV responses on the ground. What are the lessons learned from being at the frontlines and how can CBOs continue to lead the effort to change and adapt to the shifting HIV Care landscape?
PRAA: Discrimination within healthcare settings is a challenge brought on by the use of electronic medical records that reveal the identity of people living with HIV. We created a list of friendly health care services for those in need and we are now developing materials for health care providers such as dentists and dental assistants to help them better understand HIV and avoid rejecting HIV positive patients.
However, a lot remains to be done in a judicial system that continues to criminalize HIV positive people, where even those with undetectable viral load, will be threatened and prosecuted.
We conducted research on HIV criminalization and recently presented our findings at the International AIDS Conference 2020. By bringing this issue to international audience, we believe will help influence policy makers to consider reforms. For CBOs, participation through dialogue, meeting and conferences, will help create an opportunity; while, collaboration with social media and the press will help broaden our advocacy to the population.
Love Foundation: We have learned that any national strategy requires regionalization. For our Speak OUT campaign, we recruited local health ambassadors across Thailand in order to capture and reflect regional attitudes. For example, the Muslim south has a different attitude to the urbanizing north (i.e. Chiang Mai), and it is important to understand these nuances when introducing HIV prevention, treatment, and stigma topics.
In addition to regionalization, technology plays a key role in outreach. Our social media campaign, online booking capabilities, and online health ambassadorship programs are demonstrating the effect of reaching MSM demographics across the country in fast, focused ways. We have noticed similar steps are taken by countries like Myanmar, Laos, Cambodia.
The main issues that people living with HIV today face are: 1) barriers to care, 2) lack of education and awareness for HIV prevention and treatment strategies and, 3) stigma that affects ART initiation. We are now, more than ever, committed to our programs that advocate for HIV education, community-building among those living with HIV, reduction of stigma against HIV, and increase access to healthcare services through telehealth and online capabilities.
Q: Against the evolving landscape of HIV/AIDS therapies, coupled with technological advancements in medical field, what are some of the opportunities you believe could shape the future of HIV care?
PRAA: PRAA’s fundamental belief in HIV care is “Better access to essential treatment.”
Current treatment work to suppress and prevent the virus but, globally, many still struggle to access these treatments. Therefore, continuing to advocate for access to treatment remains the priority. Social education to raise awareness and destigmatizing HIV/AIDS is needed. Political will is needed to remove structural barriers to care such, as discrimination within healthcare settings, travel restrictions, and HIV criminalization.
Q: As people with HIV are now living longer, it has been suggested that community-based organizations possess untapped potential for addressing their health-related needs. Why do you think CBOs play a key role along the HIV care continuum?
PRAA: With longer life expectancy, issues such as disclosure, privacy, employment, relationships and healthcare will be inevitable. CBOs can provide psycho-social support and build the capacity of communities.
A holistic HIV care continuum requires medical treatment and psycho-social support and CBOs play a critical role to link PLHIV to care and bridge the gap of unmet needs together with health care providers. While the healthcare system is responsible for their physical care, CBO’s will complement their treatment on the social front.
Lourdes: For the past 23 years, we have been committed to developing an HIV care system to provide services with a community-based approach. These services include, among many more, financial support, halfway housing, health education talks, rights protection, physical and mental comfort etc. Our main drivers are the social workers, peer support and collaboration with multiple professionals like counsellors, nurses, medical workers, etc.
As a community-based organization, we also cooperate with the government on HIV prevention-related policies to provide anonymous screening, promote sexual health education and protection methods; and advocate for gender equality and encourage restoration of family relations. We see ourselves as a facilitator for dialogues between PLHIV and the society, which we believe is a crucial aspect to suppressing the virus.
Love Foundation is locally registered in the Northern Thailand city, Chiang Mai, with a satellite operation in Bangkok. Formed in 2016 by a longtime MSM activist, the Foundation aims to improve access to testing and treatment for MSM in Thailand through a combination of community mobilization, direct service provision, and advocacy to both government and private organizations. We currently have six staff members with expertise in HIV prevention education, community mobilization, and social media.
Love Foundation campaigns for sexual health awareness, HIV prevention, and social mobilization within the MSM community. Our organization makes a difference through social media outreach, and we aspire to radically reduce new HIV infections in Thailand by providing accurate information, advice and counseling on HIV/AIDS, and other Sexually Transmitted Infections (STIs) to as many people as possible.
Persons with HIV/AIDS Rights Advocacy Association of Taiwan, or PRAA, established in 1997, is the first nonprofit, self-help organization set up by and for PLWHA, along with family, friends, and HIV advocates in Taiwan.
PRAA assists PLWHA and HIV-affected families by advocating for their basic human rights such as access to accommodation, employment, education, and equal access to healthcare. The association also promotes HIV prevention and improvements in access to treatment. PRAA envisions a good quality of life for PLWHA and a society without prejudice and discrimination.
Taiwan Lourdes Association is a nonprofit organization dedicated to HIV/AIDS related fields and provides various services for PLWHA. The association's goal is to improve the quality of life of PLWHA through various care, support services, and programs. The association also advocates for human rights of PLWHA and empowers them to improve their general wellbeing. Its Taipei and Taichung Friendship Centers provide a wide array of services for the PLWHA community and family, welcoming over thousands of clients visiting yearly from diverse groups across various ethnicities and ages.