A Legal Haven for HIV+ Persons
Iris C F Gomes
Education and awareness drives have helped spread information about HIV/AIDS, nevertheless removing fears and prejudice against people who have the virus is still work in progress. Sometimes it takes legal action to assert one’s rights as an HIV+/AIDS patient. This has become possible thanks to the Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Act, 2017.
The Act comes as a vindication of the unjust treatment meted out to Goa’s first HIV+ patient Dominic D’Souza. In 1989, Dominic, a regular blood donor, found out about his HIV+ status in the most deplorable manner possible. A policeman turned up at his doorstep asking him to report to the Mapusa police station. From the police station Dominic was taken to a hospital where he was examined by doctors and nurses who refused to respond to his anxious queries. Finally it was a register that his name was entered in, with the word AIDS written on it, that revealed to him his ominous condition. The virus had been detected after a blood donation at the hospital. He was then held prisoner and treated as less than human at a former TB sanatorium for a period of 64 days on the basis of the Goa Public Health Act. His mother, friends, and neighbours rallied to have him released. After much battle and personal humiliation, Dominic was granted temporary release and after the Goa Public Health Act was amended, the isolation of HIV/AIDS patients became optional, not mandatory. Nevertheless the Goa Government was left with the power to isolate such patients at its whim.
At his workplace, the Worldwide Fund (WWF) office, Dominic did not fare much better. He was forced into early retirement after the divisional organiser, who had replaced him, began spreading rumours that people were not visiting the office of WWF because of Dominic’s HIV+ status.
Dominic passed away in 1992, but not without jumpstarting a movement that would serve to sensitise people about HIV/AIDS and fight the social, economic and legal implications of societal prejudice against HIV+ persons. Positive People, the organisation in Goa that works to alleviate the suffering of HIV/AIDS patients, is also the result of Dominic’s struggles.
Senior Advocate and Director of the Lawyers Collective Anand Grover spoke on the finer points of the HIV and AIDS (Prevention and Control) Act, 2017 at the International Centre Goa on the 6th of May 2017. Adv Grover says of Dominic, ‘Dominic became well-known in Asia and all over the world as an advocate for the rights of people suffering from HIV/AIDS. He was a beautiful speaker with a lot of passion. If you have passion even people who oppose you will accept you because you believe in something. You are doing it for your beliefs…not because of money. Dominic had the qualities to be a leader.’
Towards the end of his life, Dominic made Adv Grover promise that he would join in the fight to protect the rights of HIV/AIDS patients with the Lawyers Collective. This led to a landmark victory in the case of MX v ZY, which said that if an HIV infected person (male, female or transgender) was physically fit and able, was qualified, and did not pose a risk to others around, then the person could be employed without bias. The Lawyers Collective has since worked with the LGBT community and with sex workers in challenging 377 IPC. A momentous milestone was the work on Access to Medicine, leading to the introduction of triple combination antiretroviral therapy in 1995 (which reduces 99.9% of the burden of the virus) replacing monotherapy.
India’s signatory to UNGASS (United Nations General Assembly Special Session on HIV) status makes the HIV and AIDS (Prevention and Control) Act 2017 a Central Law and among the first to be science based. The Act allows people with HIV/AIDS to be the decision-makers, rendering it a rights based law and empowering vulnerable groups such as sex workers who can contract the virus if they do not use condoms. It goes beyond constitutional rights in holding not just the state sector accountable for discrimination against HIV/AIDS patients but the private sector as well. The Act is designed to protect the rights of people with HIV and those of people who cohabit with HIV+ persons. Burdens cannot be placed on, and opportunities cannot be denied to, HIV+ people in the areas of employment, healthcare services, education, goods and services, residence, property, holding a public office, insurance, etc. An HIV+ person cannot be isolated because of his positive status nor can he be mandated to have an HIV test before employment. Any complaints of discrimination can be taken to the ombudsman or to court.
Hate speech promoting the harm of HIV+ persons is forbidden under this Act. They may not be tested without their or their representative’s informed consent, which means pre and post-test counselling must be in place. Only in certain cases informed consent may be waived, such as by court order (eg if it is a case where the wife was not informed of the husband’s HIV+ status), for medical donation, for epidemiology and screening in blood banks. However, the HIV+ person must receive counselling and be informed of the purpose of the epidemiological studies.
A person with HIV/AIDS cannot be forced to reveal his status nor can any person reveal the HIV+ status without the consent of the patient. Disclosure is allowed between healthcare workers, counsellors and individuals involved in the treatment of the person concerned; by court order; for the purpose of data collection; and for supervision by the Central or State AIDS Control Society.
In the case of disclosure to the partner of an HIV+ person, this will take place only through a physician or counsellor of the patient. There must be a high risk to the partner and the infected individual will have been advised to disclose their status but refused to do so. The healthcare provider will make the disclosure after informing the HIV+ individual, except if there is fear of repercussions of physical violence or abandonment of an HIV+ woman, her children or relatives. Data related to a person’s HIV+ status will remain confidential with a model HIV and AIDS policy (to be notified by the Central Government) for the establishments holding the data.
The Central and State Governments are responsible for the prevention of the spread of the virus and must ‘as far as possible’ make provision for diagnosis and testing, treating opportunistic illnesses and delivering antiretroviral therapy to people with HIV/AIDS. The ‘as far as possible’ led to a dispute between the Government and the community but the former refused to make a change. The guidelines for this are to be notified. ‘There are guidelines for the first and second line of treatment but not for the third. Most of the money for the treatment comes from the Global Fund…Originally the treatment would be started when the CD4 (HIV attacks CD4 or T-cells which protect the body from infections. When this count goes below 1200 and continues decreasing, the viral load increases) went down to 350 CD4 count. Then it was increased to 500. Now the moment you are found out to be HIV+, you are started on the first line of treatment. This will prevent transmission because transmission is still possible at 350 CD4 count,’ says Adv Grover. He warns that if individuals do not take the treatment regularly it can lead to resistance and the second and third lines of treatment are much more expensive compared to the first line.
HIV infected individuals who have been imprisoned after being convicted of crimes, are awaiting trial, have been detained as a preventative measure or are under the care of the State can avail of means to prevent transmission of HIV, treatment and counselling.
Often children affected by HIV/AIDS are cheated of their property and homes by unscrupulous relatives or neighbours in the event of their parents’ death. These children can have their property rights safeguarded by having a child or the parents/guardians of the child deposit property papers with the Child Welfare Committee. A mature child who is between 12 to 18 years of age can be appointed as guardian of his/her siblings with power to look after legal, financial and household matters. The HIV+ parents can create a living will that allows the transfer of guardianship of their children in the event of becoming incapacitated or death.
To establish a safe working environment, especially for healthcare workers and doctors involved with treating HIV/AIDS patients, they have the right to wear gloves, can take antiretroviral drugs if they have a cut which comes in contact with the blood or fluids of an HIV/AIDS patient (post-exposure prophylaxis) and take other precautions to curb the spread of the virus.
Each establishment will need to have a complaints officer that an HIV+ person can approach instead of directly going to court.
Risk reduction is very important and vulnerable groups such as sex workers, drug users and members of the LGBT community are significantly part of the programme. Female sex workers are empowered to ask their clients to wear condoms. Because gay sex is a criminal offence in India, this law protects those engaged in risk reduction strategies such as asking homosexuals to use condoms. Besides education, counselling and safe sex information, strategies like drug substitution and dispensing clean needles are used as well.
An ombudsman will be available to see to healthcare complaints and discrimination of HIV/AIDS patients. An ordinary complaint would be resolved within thirty days and a medical emergency within twenty four hours. However, Adv Grover expresses his doubts on the functionality of this provision unless the required number of ombudsmen are appointed.
There are other provisions to the HIV and AIDS (Prevention and Control) Act, 2017 aside from the main ones described above. The law is not perfect, but that some effort has been made towards protecting the rights of HIV/AIDS affected individuals is an impressive move in the right direction. And while a law may be in place, what is truly vital is that we change our mindset as a society and rescue our brothers and sisters from the victimisation of this disease. Hopefully, we are slowly arriving at what Dominic yearned for as he said in his speech at the International AIDS Conference at Amsterdam in 1992, ‘I do realise that initially it will be difficult for HIV positive person in India to come out in to the open but I do not see it as impossible. I live in the hope of a world that will be, if not free from disease, at least free of fear and discrimination. The world that accepts us with respect and dignity.’