“You guys are useless”
I had contacted Wake Up Pune for assistance with the treatment of my maid, who is not being hospitalized by her family due to the stigma attached to this disease. Your person “Prakash” just sent a counsellor “Niharika” who was no good. He said that you guys can help her only if I can bring her to your centre, if I could bring her to your centre, I would have just taken her to a hospital. The entire challenge was that her family was not willing to send her to the hospital or anywhere else. Today this lady has been off her medication since more than 2 weeks and is simply wasting away. This is cold blooded murder and you guys are also responsible for it, as an NGO which I guess receives a fair amount of govt grants, you guys were totally useless and showed total apathy towards the plight of a helpless woman. You’ll should be ashamed of yourselves and please understand you’ll have this womans murder on your hands.
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We understand your frustration and anger that your maid is unable to access treatment because of stigma and discrimination. We have faced the same problems and have struggled to stop the fear and ignorance which keeps people from seeking treatment. In this case, however, your anger is misdirected.
Please do not interpret the limitations of ART services as a lack of empathy or as indifference on our part. Many of our partners, their staff, and our volunteers are HIV+ themselves or have had family and friends who have passed away from the effects of HIV. We understand the pain you, your maid, and all those who care for her are feeling.
Wake Up Pune is not an NGO but a volunteer civil society organisation. The field workers you met are working for our partner NGO called Deep Griha Society. We simply referred your case to them to see if they could help.
We have never received a single rupee from the government.
As I have understood, they did everything they could for your maid. The area she lives in is very far and is not an area Deep Griha Society usually works in. “Niharika” did her job as counsellor as she has been trained to do. It is not in the power of any of Deep Griha’s employees to force a client to go to hospital as this is against India’s penal code. There was therefore nothing more they could do if both the family and the client were not willing to go to a hospital.
The field-workers never said she could only attend our health centre (it does not take in patients, only does testing and counselling). Clients are usually referred to Sassoon Hospital or any other centre that cares for HIV+ clients. With her consent, this is where you should have taken her. Our biggest challenge was not the family but the client herself who was not willing to go. We are not policemen, we cannot force the client to get help. It is those who are close to the client (you and the family) who have the most power in such situations.
You mentioned that your maid had been on treatment. I’ll assume it’s Anti-Retroviral Therapy.
ART is not something we could simply bring to your house. It must be prescribed by a doctor and the client must regularly get check-ups to monitor the effects of ART on her immune system. If the client remains unwilling to go to a hospital, and if you have the money, you could pay a doctor to make a home visit.
You are right to be very worried. Once someone has started ART, they can never stop. If the ART treatment is stopped, the effects are disastrous. You must get her help as soon as possible. Convince her. Try to convince the family, but ultimately it is her decision. The family cannot legally stop her.
I have spoken to to the field workers you met and they said you wanted nothing more to do with them. If this is the case I suggest you contact one of the many organizations available to help people in your situation. You need to do this immediately. It is not too late to help her but unless she is willing to be helped there is nothing we can do. Please contact:
Sahara Aalhad Carehome for HIV+ people (if you can get her to the centre, they should be able to help with the treatment and everything else) at 63, Ganesh Park, Nr. TVS Godown, Wagholi, Pune 412207, Phone: (91)-(20)-66828572 or for advice, MUKTAA Helpline on +91 20 26381234.
It is obvious that you really care about this woman and want to get her help but are hitting a brick wall of fear and stigma from her and her family. We truly hope you can convince them to seek treatment.
Sincerely,
Dr. Punewali
