23-09-2016, 04:28 PM
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Recap of previous session
There were people for whom last session was on sexual health, other with disclosure. The facilitator asked them what their memories of their last session were; some of them are very shy to talk about the last sessions talk as it was about sexual health and abuses used by people about their body parts. Some of the feedback came like this. They don’t remember what they attended and heard of, may be because they don’t want to talk about it.
Some other said it was a very dangerous topic(Sexuality), but then they spoke that they were been taught about using bad/abusing words by their husbands is a wrong practices and therefore they should raise their voice against it. The lady who attended discloser session also was very active and spoke that how they can do a discloser about their condition to those people who take care of them and many more.
Some were active and some of them were not ready to talk but more than 50% were active.
Stigma and discrimination
The facilitator asked them, “What is discrimination?” 2 community members among the group voluntarily explained what they understand by the word. They said that, when people know that someone is HIV positive they were ill-treated in work place, in neighborhoods, by nurse, in hospitals doctors sometimes etc. And they said it its very upsetting thing for them.
Children engagement
There also was a discussion regarding if these people know what their children were taught in the child sessions that were conducted by the Nirmiti, CCDT in every 3rd Sunday of the month.
Some said they do others said they are not bothered about it. They said their children find these sessions interesting and also they are learning by it. And at their house they explain what they learned
What is HIV Bill
The first question to the group was, do they ever heard of HIV Bill ! The response was a big “NO”. Not single was aware of it. Then the facilitator explained them that there is a Bill designed for HIV Bill in India, so that their difficulty can be reduced. The right and duties of them can be protected legally.
Background of HIV Bill
This is a proposed bill was first proposed in the year 2013 on 20th of May. NACO created a bill 2014 to prevent discrimination. They also mentioned that lots of rallies and signature camps also took place in those days. A huge number of people, volunteers, HIV positive and negative people were joined these rallies and camps. The NGOs working for HIV affected supported and encouraged these rallies. But still the bill is not passed.
Why do we need legislation on HIV?
The first question in section was do they feel that they need a legislation like this for them! Everyone said that “yes, they need such a Bill”. Then the question for them was why? There were many interesting reasons came out, they said by that they will be able to get rid of discrimination, they will get services in time: one mentioned that the ART centre people don’t give her medicine as much she needs so she can file a complaint against him but some others disagreed her comment and said that it’s not the service providers fault sometimes they run out of stock so do like that. All actively responded to it by saying they need a HIV Bill for their betterment.
Then they were explained that, the need of this bill is to prohibit HIV-related discrimination such as-denial of access to healthcare and treatment, denial of and/or removal from employment, denial of various services including insurance, medical benefits etc, discrimination regarding education: admission or continuance of children in schools.
They need such bill to strengthen the program, by bringing in legal accountability, establish formal mechanism for redressing grievances and inquiring into complaints.
Who are the beneficiaries?
When such a question put before them they said it the HIV +ve people their family will get the benefits out of it. And lady among them told that by the Bill they will get separate schools for HIV children then they will not suffer from discrimination by peers and it will better for them, but many disagreed to it and all said by that they will go more towards discrimination in place of getting rid of it as by getting a separate school they will be noticed more clearly.
Then the facilitators added to it that people living with HIV affected, spouses/partners living with HIV affected, sex workers, transgender people, drug users etc.
What the bill seek to do?
They were enlightened with what this bill seeks to do. They were explained that the will address stigma & discrimination, it will safeguard rights of people living with HIV affected and HIV affected person and also it will prohibit discrimination related to HIV/AIDS in public and private sector.
It will help to establish system of grievance redressal .
Silent features
They were told that the Bill says that HIV infected can’t be discriminated, so if this Bill will pass then legally the HIV infected will be secure against discrimination. In between women was curious to know that is it only functional at Mumbai only or she will get this advantages in her village also! Then she was explained that it will be applicable nationwide.
Informed consent; to explain this feature they again asked that where they should go to get a conformation test. They said one can go to hospital and get a test of it. Then next question to them was “do the doctor need your permission before doing HIV conformation test?”and also justify your answers.
Then it was an interesting discussion one lady said ‘NO the doctor need not to ask for permission.’ Her justification was that if the doctor waits for permission of patient then the treatment will delayed and one will roam around hospitals doing all that testing of endoscopy, blood test, cough test and other tests and still suffer and also will get a economic burden. So it will be better if the doctor do HIV testing before hand it should not bother us.
But others said “the doctor should take their permission.” But no strong justification came they only said they should ask for our permission before any test of their blood.
Then they were made aware that, if anyone does any test of/on their body then they must be asked and if incase the patient is not in a condition to talk or take decision then a near and dears of the patient must be taken. On their own body and they have they only have the right to take decision. Then everyone understood what facilitators explained and agreed to it.
In this section after listening this entire thing one lady among the group said that you are telling us all this but in medicals we don’t even get a space to ask what medicines we are given for what reasons. When they ask such questions they get scolded by nurses and instructed not to interfere into it.
Another lady mentioned story about a doctor, how they getting harassments by him. Her family at first went to him for checkup then he recommended them to a doctor then they got the checkup from there and showed the report to this doctor. Then their condition was known to the doctor and after that when this doctor started talking about this HIV affected family to whomever form this lady’s village comes to his clinic and hence adding more their suffering.
Then they were asked that if they get a counseling before and after the check up. Everyone said “yes” they do. Again the facilitator added that a counseling needed as a person in to as that moment one known he/she is suffering from HIV because as our society looks at this disease one will feel that his/her had done some sine and his/her life is over, which is not true. Counseling will help them to come into a stable mental condition.
One question came that she had watched advertisements of some ayurvedic medicines which will cure the HIV completely.
Then again a story came that a person staying in Mumbai suffered from HIV and then he move back to his village and got rejection from his own family and stayed in a forest for months there he use to eat plant parts from forest and drink milk from cow and stayed like that. After around 6 months he again back to Mumbai and had a checkup of HIV and amazingly he was negative. So her point was there is something which will cure HIV completely also added people are searching for what he ate but no positive result came.
Then the facilitators explained them no such medicines till date had come and advised them not to get mislead by these kind of advertisements. And before practicing any such medicine they must take an advice of a doctor or any expert in the field of HIV.
Discloser of HIV status, the question to them was to whom they should disclose their condition .
Then a lady narrate a story of herself how she disclosed to a lady and how she created a difficult situation for her by telling her situation to all. She narrated the whole story in detail(it was in Marathi ) .
Then the question was do the pregnant lady need to be disclosed. All said yes.
Then the facilitator explained the group that they need not disclose about their situation to all, they can only tell to the person on whom they trust an believe that he/she will keep it secret. Also added that there is not a compulsion that they only will do the discloser by themselves they can also take a help of a doctor for this purpose.
Reducing risk among MARPS, the facilitator asked to the group that what do you think should criminals also get benefit from this Bill.
All said yes they should also get benefits, their argument was although they did crimes they are also human beings. They are already jailed for their crime so they should not also suffer the curse of this disease. They said the law and police should punish them for their crime not for their disease. Then facilitator explained that they will get benefits from this Bill.