2nd Comprehensive workshop/Training/ Networking on HIV/AIDS in Phendeling Tibetan Settlement, Mainpat, Chhattisgarh - India.
September 15 – 20, 2011 / by: Phuntsok Chomphel - CHOICE
The need of tackling the rate of HIV infection among Tibetan refugee communities in India and Nepal is immense. CHOICE—HIV/AIDS Initiative, since its inception, has been working consistently in providing preventive and educational workshops, peer counseling, and financial help/assistance for those living with HIV/AIDS under “Adopt an HIV Family” program.
In 2010 CHOICE—HIV/AIDS Initiative formed grass-root network of HIV positive Tibetans in Bylakuppe and Mundgod Tibetan Settlement. Also in March 2011, Department of Health and CHOICE—HIV/AIDS Initiative jointly organized the first ever Interactive Workshop for the Tibetan People Living with HIV/AIDS (commonly termed TPLHA) in Dharamshala, participated by 9 TPLHA.
During the workshop, discussions were held among the participants and concerned offices which led to the suggestion to formulate Network in various settlements. The primary aim and objective of the Network was to provide a platform for those HIV positive individuals or families who had suffered and continue to suffer discrimination and humiliation for being HIV positive from their respective communities. The TPLHA were finding it hard to live a healthy and respectable lives in their communities but through this network they were able to create a mutual friendship, cooperation and support amongst themselves thus overcoming the difficulties faced by them.
To implement the resolution passed during the historic event, CHOICE team comprising of Mr. Phuntsok Chomphel (Co-Founder/ Trainer) and Ms. Tsering Paldon (Co-Founder/ Vice-Chairperson, Head Public Health, Tibetan Delek Hospital) conducted a 5 - day workshop/ Training/ Networking and Meeting TPHLA in Mainpat Phendeling Tibetan from September 15 to 20, 2011.
The Workshop and Meeting/Networking was hosted, arranged and coordinated by the Phendeling Settlement Officer Mr. Tsering Wangchuk, Executive Secretary/ Medical Officer Dr. Lodoe and Ms. Dawa Chodon (CHW and HIV/AIDS Nurse) of Tibetan Primary Health Care Centre, Phendeling Settlement.
The first day of the workshop was specifically targeted for camp leaders, nurses and health workers from settlement clinic, representatives from RTYC & RTWA, and members of Co-operative Society along with staffs from settlement office. The gathering was aimed to receive feedback/suggestion from the stakeholders to understand and cooperate among the stakeholders or individuals in advocating and jointly initiating efforts to reduce the rate of infection and in providing support services to TPLHA.
The workshop began with introduction speech by settlement officer Mr. Tsering Wangchuk about CHOICE’s team members and the importance of such workshops in the settlement. Following this Mr. Phuntsok Chomphel briefed the participants about the CHOICE team’s purpose of visiting settlement and its background. Mr. Chomphel talked about issues ranging from early prevention to individual initiatives giving precise reasons as to how small communities of Tibetans in every pocket of the sub-continent share the same crisis. He talked about the challenges of Anti Retroviral Therapy (ART drugs) and its generic limitation to positive people’s fear of coming into limelight that can be easily overcome through simple ways in understanding the issue through preventive methods and changing individual state of mind in accepting the TPLHA.
CHOICE’s campaign video featuring His Holiness the 14th Dalai Lama’s message on HIV/AIDS and message from former Katri Prof. Samdong Rinpoche and former Health Minister Mr. Chope Paljor Tsering was screened. The 11 minute campaign video also featured presentation of a case study— the true life story of an HIV infected youth that illustrates the kinds of issues, discrimination and challenges that HIV patients face in Tibetan communities.
Ms. Tsering Paldon gave a short power-point presentation on basics of HIV/AIDS and myths involved with the disease and various facets of the disease namely; difference between HIV and AIDS, modes of infection and preventive methods. She also briefed how the disease is spreading in the Tibetan communities in exile and in Tibet through unhealthy sexual behavior and lack of proper preventive knowledge on HIV.
Ms. Paldon stressed on behavioral changes amongst people through broad communication of information on HIV/AIDS especially in reducing discrimination against people living with HIV/AIDS that ultimately let positive people to accept their status and living healthy life free of prevailing vices of stigma and discrimination attached with the disease.
After the presentation by CHOICE’s team members the workshop attendees were asked to share their thoughts and suggestions on how You, I, we and CHOICE can jointly work together in the settlement in future.
Mr. Phuntsok Chomphel highlighted the need for urgent measures to tackle the high rate of infection in the settlement and overcoming key risk factor, and how the stakeholders can play a role in tackling HIV/AIDS in the community.
One of the camp leaders (Gyakpon) opined that since the settlement itself is located on hilly remote area he doubted that the infection might be linked to the seasonal business which keeps the majority of the population, especially youth away for months raising the possibility of their indulgence in risk behaviors. He further emphasized on the need to educate younger generation and their involvement in such educational workshop.
Mr. Tsering Wangchuk (settlement Officer) emphasized on the role of community members in eliminating discrimination towards TPLHA. A female participant was of the view that giving job opportunities will financially support and build social security to the downtrodden/poor people with HIV/AIDS. She also requested CHOICE’s team to meet TPLHA and provide proper counseling and possible support facilities.
Another participant said Mainpat witnessed its first HIV case during mandatory HIV test conducted by Dept. of Home for selected candidates for agriculture training to Israel in 2006. Later in 2008 more cases came into light during Department of Health’s mass HIV testing from December 1, 2008. The participant grieved that youngsters refusing or not interested in HIV testing at settlement clinic is caused by the fear of disclosure of their status. He therefore requested CHOICE for more such awareness workshop so that people could feel safe while going for test.
Another participant said HIV positive people should be encourage to disclose their status in public and also called for continued mass HIV testing. Mr. Phuntsok Chomphel reacted, “we can’t force or urge HIV positive to disclose their status without their consent.” Furthermore the law protects the rights of HIV positive people and their privacy.
An interesting question raised by one of the participants relates to giving opportunity to HIV positive people to perform medical activities as there was a noted incidence of an HIV positive individual providing minor medical services to non sero-positive people. To clear the doubt Ms. Tsering Paldon (RN/ Head Public Health, Delek hospital) responded, “as individual practicing medical line we always consider every second person as HIV positive and vice-versa”. This means one must follow Universal Precaution in dealing with any kind of medical services. Besides Ms. Paldon was also concerned about the high prevalence of Hepatitis B among Tibetan refugee communities since the mode of transmission is as same as HIV. She also clarified certain myths and doubts about precautionary methods for Hepatitis B infection.
Another questioned concerned the role of Network of Positive people and its implementation and future prospects of such network. Mr. Chomphel clearly underlined that Network doesn’t necessarily mean representing class or group or organization. Rather ‘it’ should be more like a platform (Kyi-dug in Tibetan) bridging societies and people infected and affected by HIV/AIDS and supporting each other during crisis in particular and cooperation amongst the TPLHA in general.
A suggestion for separate workshop for men and women was also made owing to an existence of a particular camp where majority of the people are related to each other.
The session witnessed several feedback and suggestions that helped the resource speaker/ CHOICE’s team in planning future meetings with TPLHA and workshop on HIV/AIDS.
During the following days i.e., Sept. 16 – 20, team members of CHOICE conducted workshop on HIV/AIDS prevention and screened campaign video on HIV/AIDS. Ms. Tsering Paldon took a session on HIV/AIDS and Sexually Transmitted Infection/ Disease while Mr. Phuntsok Chomphel took a session on Global Summary on HIV/AIDS, history and its challenges. Most importantly, he spoke on how vulnerable Tibetan community in exile has become due to high mobility and dangers posed by huge influx of Chinese into Tibet. Mr. Chomphel also talked about gender issues and women’s role and condom negotiation skills.
The following topics were thoroughly presented, explained and discussed: HIV/AIDS facts and figures, safe sex practices, HIV testing and counselling, opportunistic infections, women and HIV/AIDS understanding stigma and discrimination associated with HIV/AIDS, human rights in relation to HIV/AIDS, care for HIV/AIDS infected patients, anti-retro viral therapy etc.
Besides workshops, CHOICE team along with Mr. Tsering Wangchuk (Settlement Officer) and Nurse Dawa Chodon visited 10 different individuals/ family living with HIV/AIDS. The nature of visit was important in forming Network of Positive People by interacting with them, discussing various issues regarding their HIV positive status and their current condition. While listening their stories and the problems they had encountered after being diagnosed HIV positive Mr. Phuntsok Chomphel documented new cases and enrolled some of them in CHOICE’s ‘Adopt HIV Family’ program. Ms. Tsering Paldon gave counseling on basic health care and hygiene related to HIV issues. She also suggested extra nutritional supplements viz. Multi vitamins and adherence to ARV/ART (specific drug from HIV patient).
During the first day, CHOICE met with over four different HIV infected families. Ms. Tsering Paldon introduced CHOICE-HIV/AIDS Initiative office, its aims and objectives and the campaigns it undertakes, especially the awareness programmes, care and support campaigns. Mr. Phuntsok Chomphel spoke about the network of TPLHA that CHOICE had created and the need for creating the same in Mainpat for coordination amongst TPLHA and managing their welfare etc.
Ms. Tsering Paldon encouraged them to be positive in their outlook and approach regarding their HIV status and to face the challenge with greater optimism. She also urged them to prepare to live a long, healthy and normal life despite the infection. Ms. Tsering Paldon also spoke about the care, facilities and the support rendered by the Department of Health for the HIV patients and to avail them without hesitation. She also assured CHOICE's support in eliminating their problem whenever they are in need.
CHOICE also requested their participation in the forthcoming Workshop and interaction amongst the TPLHA. Almost everyone assured their willingness to participate in the network and the Workshop. Some patients, of course, hesitated to meet with the CHOICE members for fear of disclosure and ensuing discriminations but later one of them personally visited CHOICE team at their guesthouse.
Meeting/Networking of Tibetan People Living with HIV/AIDS – Mainpat Phedeling Tibetan Settlement:
Later on the afternoon of September 19th from 3:30 p.m. to 7:00 p.m., CHOICE had a fruitful interactive session with 6 HIV patients and Nurse Dawa Chodon at the settlement’s guest house and formally launched Network of Positive People at settlement.
The meeting began with informal interaction on issues of regular ART supply and support within the TPLHAs.
All the participants positively shared their past and present experiences. To our surprise we noticed good coordination among camp 4 & 5 TPLHA where they routinely assist each other in supplying ART thus avoiding arduous journey to the nearest ART Center (located in Ambikapur around 50 k.m.).
Though all the participants accept that their status is known to all community members but feeling of guilt within still prevents them from attending the workshop. One of TPLHA refused to attend the workshop. Another TPLHA encouraged him saying it is only one’s state of mind on how a person perceives things differently. He said HIV is same as other diseases but “we are more privileged in that they can consume any kind of food unlike diabetic and hypertension patients who are restricted and have limitation on food consumption.”
One of the patients feared that the guilt and stigma attached with HIV status could harm her kids while they’ll grow up having to face discrimination from the community. Ms. Tsering Paldon cited an example of the hype surrounding Hepatitis B when it was first witnessed a decade back when patients saw worse problems such as mental stress and depression among Hepatitis B positive people. She said things had completely changed now. Same can be applied with HIV/AIDS menace through collective effort of every stakeholder, awareness programs and individual responsibilities. All the TPLHAs requested CHOICE to continue its ongoing Prevention and Education Awareness programs.
A common thing noticed was that all the TPLHAs were first diagnosed during Department of Health’s mass HIV Counseling and testing conducted in 2008. One of the TPLHA thanked Dept. of Health for conducting the test in settlement and knowing their status at early stage.
Regarding physical and mental fitness Ms. Tsering Paldon said that one should keep himself or herself busy with daily chores in order to avoid mental stress. She further said household work is another kind of exercise that a healthy body requires.
All TPLHAs unanimously expressed their wishes of admitting their kids to TCV boarding schools for better education and also reducing the risk of getting infection from the parents.
Regarding supply of ART drugs, the Govt. of India’s National AIDS Control Organization’s (NACO) guidelines allow an individual to procure only a month’s ART from the nearest ART center. Similarly, the Tibetan Medical and Astrological Institute/ Men-Tsee-Khang (TMAI / MTK) provides Tibetan medicine for only 10 days. This poses a serious problem to TPLHAs engaged in seasonal business in visiting ART Centers every month. They requested to find ways in getting ART for more than a month and more than ten days’ Tibetan Medicines. One of the TPLHA also requested for vaccination for Typhoid and Malaria.
Mr. Thupten Choephel (HIV positive) shared personal experiences of attending the first ever TPLHA meeting and importance of forming Network of Positive People in the settlement. He had volunteered for the first time to participate in CHOICE’s workshop as peer educator and pledged his contribution in the future as well.
CHOICE hosted a dinner for the entire TPLHA at the end of the meeting. Medical Officer Dr. Lodoe Phuntsok and Settlement Officer Mr. Tsering Wangchuk also joined the dinner. During the dinner Mr. Phuntsok Chomphel briefed Dr. Lodoe and Settlement Officer about the meeting’s minute and developments.
CHOICE extends it sincere gratitude to the Department of Health for all possible support in making 2nd Comprehensive Workshop and Networking of TPLHA successful.
CHOICE also wishes to acknowledge the overwhelming support and concerns extended by the Settlement Officer Mr. Tsering Wangchuk and Executive Secretary/ Medical Officer Dr. Lodoe Phuntsok and Ms. Dawa Chodon (CHW and HIV/AIDS Nurse) of Tibetan Primary Health Care Centre, Mainpat Phendeling Tibetan Settlement for making the workshop a great success.
CHOICE also acknowledges the support being provided by Private Office of His Holiness the Dalai Lama and Department of Health, CTA, especially Health Secretary Mr. Wangchuk Phasur and Additional Secretary Mr. Topgyal la, dealing officer Mr. Lobsang Dhargye and all staff members of Department of Health.