Appeal to the Government of Sri Lanka from Lanka Plus

Lanka Plus, the only registered HIV/AIDS positive people’s forum of Sri Lanka wants to address the Government of Sri Lanka and all other key stake holders including UN, on World AIDS Day 2006.

We want them to listen with care and patience what some of the people living with HIV and AIDS (PLWHA) in Sri Lanka have experienced in the last 10 years time. We, the members of Lanka Plus believe that PLWHA should speak out and share their experiences and learning and make some recommendations on existing HIV and AIDS response programmes. Our intention it to share, not to challenge the on going HIV response in Sri Lanka, but to make it more effective and adequate for all citizens, particularly for the families who are infected and affected from the virus, to lead a normal life with dignity in an environment secured our human rights by all civilians.

Situation of positive people in Sri Lanka

Since inception of Lanka Plus we have come across lots of challenges like denial of our fundamental human rights due to stigma and discrimination attached to the causes of transmission of the virus. We faced this situation because of lots of misunderstanding due to lack of information and misconceptions about the disease, disseminated at the initial stage which still exist today.

However, after almost 10 years of our struggle to survive as an independent organization, working for the benefit of the PLWHA, we have gathered lots of experiential learning which is exclusively by people living with HIV/AIDS. And we would like to share our key concerns and make some recommendations to all key stake holders of National HIV/AIDS response programme, which we believe it will help us all to initiate a consulted effort to develop a long term sustainable HIV/AIDS response.

Lessons learnt from the past

One of the very first challenges we faced from the very beginning was access to treatment and ARV was not available at that time. We are very thankful to our Government that they are now providing ARV free of cost.

However the service is not adequate in terms of number of hospitals and clinics established. At present, only one hospital (IDH) in Colombo city has treatment facilities. But CD4 and other testing facilities are not available there. Not all staffs working in the Hospital are sensitized to serve the PLWHA.

Therefore our first appeal is to extend the services at least in other three major hospitals around Colombo and provincial hospitals as well. So that, more people can get access to free treatment.

HIV is not only transmitted through sex. Non-sex activities (blood transfusion, use of contaminated injecting syringe, use of non sterile surgical instruments in the hospitals, mother to child transmission, etc.) also play important role as mode of transmission. Therefore to remove stigma attached to HIV and AIDS and to make the service accessible to all section of people, we strongly recommend separation of HIV treatment from STI clinics. We firmly believe that an independent service unit in a hospital setup (like any other unit) would help to de-stigmatize HIV and AIDS make the service accessible to all.

The treatment literacy and access to information for the PLWHA is still not at very satisfactory level. Therefore we would like to draw the attention of the National HIV/AIDS campaign on increasing the awareness level on the treatment literacy and have a better follow up and monitoring system to see the progress of the treatments.

Though the medicine is free, but treatment related other costs are not covered that eventually increases family expenditure that happen because large number of positive people leave outside Colombo city. To get free medicine they travel to Colombo city from different provinces. Some times they had to stay in Colombo two to tree days. In those cases they pay for their travel, accommodation and food. There are tests that also cost money.

Therefore we would like to propose the Government conduct a need assessment towards developing a comprehensive treatment package which should make provisions of covering costs related all kind of tests, treatment for opportunistic infections, travels and accommodation, nutrition, alternative food for the positive babies.

Otherwise the present free ARV programme would become a burden for positive people and their families. At the same time we would request to increase existing facilities in other district/ teaching hospitals (at least one in one district) to get access to the ARV and other treatment related services.

In addition to the above mentioned medical related facilities hospices could be established further for the terminally ill patients who need care and support. We believe the Government/Ministry of Health should extend their support on realising this dream as an extension of the Government commitment for the HIV/AIDS.

The treatment guideline

To avoid treatment hazards a proper treatment guide line needs to develop for Sri Lanka. Proper implementation and monitoring can only avoid the risks of toxicity, growing drug resistance and side effects and maintain treatment ethics. We therefore propose to appoint a committee for developing a treatment guideline which is very necessary to protect lives of PLWHAs.

There are evidences that in different countries human trials of AIDS medicine are taking place. In most of the cases people are not informed about the trial, no protection of volunteers are in this kind of trials, if goes wrong. Therefore we would like to make an appeal Government of Sri Lanka that any such trials ever happen in Sri Lanka should properly informed and rights of the people should be properly protected.

To develop a cadre of trained professionals in HIV/AIDS response programme, we would suggests HIV/AIDS should be a part of the medical curriculum for the final year medical students and they should be given a complete practical training in treating positive patients for universal access.

Although the Sri Lankan Health service adopting WHO guidelines on medical ethics we humbly request the Sri Lankan Government and the Ministry of Health to appoint a special committee to draft a special guidelines for the medical professionals in dealing with the Positive patients and promotion of the implementation of the guidelines at all medical and health institutions.

Pre and Post adequate counseling for newly identified Positive people and the family members

There is no mandatory pre and post counseling for HIV testing. Therefore people are scared about testing. This is another concern we are having. We need proper counseling for the PLWHA through Government health system through well trained counselors.

Prevention and care support

Stigma is still attached to HIV and AIDS related message in the media, such as, “you don’t get HIV/AIDS if you don’t engage in elicit relationship” and “life will be flowery and rosy until you get HIV/AIDS”. Those posters and stickers should be removed from public places. The National HIV/AIDS program should focus on the messages to give the written/correct information on how to get prevented from the disease and how to treat the PLWHA as a social responsibility. Therefore the social security network for the PLWHA under the presidential secretariat could be established to prevent all the discriminations and ill treatments faced by PLWHA.

Greater Involvement of People living with AIDS

We can not see this in practice at a greater level. Now after we re-organized our Lanka Plus forum we are getting more opportunities to raise our concerns at various forums, with the support and the direction of the Advisory Board Representatives of Lanka Plus. The sensitivity of the employers on the HIV/AIDS is not at all satisfactory and the newly identified positive people are being discriminated from their rights to employment. Nor agencies interested in employing positive persons. Participation at all levels should be ensured by proper implementation of ” greater involvement of people living with HIV/AIDS (GIPA)” principles.

Through our observation and review of present HIV/AIDS policy in Sri Lanka, we would like to make following recommendations for developing a better-coordinated, comprehensive and sustainable HIV and AIDS National policy for 2007- 2010:

National AIDS Council should be activated to provide policy guidance and regularly review the progress of national response;

HIV should be considered as a development and human rights issue in which health (treatment) is an important component along with other components like prevention (awareness), care and support. Therefore, to have proper reflection of 2006 Political Declaration to set an ambitious but achievable National targets on three programmatic areas i.e., prevention, treatment, care and support.

A National HIV/AIDS Commission should be set up for policy implementation, programme monitoring and inter agency coordination. Commission should be set up at President’s office and directly report to the Honorable President who is also the Chief Patron of the National HIV/AIDS Council.

To comply with “three ones” policy, following arrangements should be made in the strategy. All funds should be placed in one basket from all sources for allocation against national intervention plan.

In solidarity,

T.W. Princey Mangalika
President of Lanka Plus

[Full Text of Press Release - Lanka Plus]