Interview with doctors and staff at the ART center, Bowring Hospital
Duration: 01:01:04; Aspect Ratio: 1.366:1; Hue: 39.803; Saturation: 0.007; Lightness: 0.367; Volume: 0.092; Cuts per Minute: 2.783; Words per Minute: 117.052
Summary: Tracing the story of the global struggle to make HIV/AIDS drugs more affordable and available, A Human Question raises key questions of whether private ownership of knowledge can be at the costs of human life?
Shots Outside Bowring and Lady Curzon H ospital
3 by 5 WHO initiative
medication and counseling
File folder shots
Mahesh, Jayashree speaks (inaudible)
DR MAHESH MC introduces himself as the SENIOR MEDICAL OFFICER at the ART CENTER in BOWRING HOSPITAL since its INCEPTION ON APRIL 1ST 2004.
I'm Dr Mahesh MC. I'm working here as a Senior Medical Officer in this ART centre since its inception in this hospital (J : When did it start?) It started on April 1st, 2004. (J : Part of the 3/5 program?) Definitely.
dr mahesh mc
inception on april 1st 2004
senior medical officer
Discusses his work experience earlier as a RESEARCH officer at a PPTCT CENTER.
(J : Were you treating HIV patients earlier) No I was having, I was working in a PPTCT centre as a research officer. Prevention of Parent-Child Transmission. Not, we, I'm a pediatrician by profession, so I was looking after the kids there. We used to treat with them, we used to treat the patients, but not with ART. We treated with ART , few children, in hands numbers, say 3 or 4. There were taking on their own. But generally adults after coming here only I have seen.
prevention of parent child transmission
Discusses the increasing PATIENT LOAD
(J : What has been your experience so far?) If you ask specifically, it'll be better to answer. (J : How many patients have you seen?) Initially when the program started, the flow was very less. Ok, we used to hardly see around 10 to 15 patients per day. Now the program has picked up, and now actually we see 50 to, minimum 50 patients per day, OPD, any gross day. Sometimes we reach up to 100 patients per day. And it includes all the new cases, old cases, and those patients who have started on treatment. On an average, we are getting around 5 to 10 patients per day.
Discusses the kinds of patients who come in and when ART THERAPY becomes appropriate.
(J : How long does it take to start ART?) Ok. Majority of them will come in that stage. I mean, not in AIDS stage. They would have treated previously somewhere also. Those who are seeking this centre, treatment from this centre, they are aware of their status and they are with regular follow-up with some of the other doctors in the private set up. They will be well knowing about their disease, and they will be knowing their CD4 status. So usually when they come, usually it takes minimum say around 1 week to 2 weeks. They will start. After counseling we start them on treatment.
Talks about the process of ACCESSING CARE THROUGH THE ART PROGRAM that a patient typically goes through.
Ya, the procedure, what is the protocol here is once the patient comes, we will register the patient and just go around, how the unit works, we just register the patient. Before registration, we see whether he is aware of the status or not. They do get the private reports. Many times, we, even though it's fine we send them back to VCTCT. The main advantages is reconfirmation. The second thing is, we get a proper pre-test and post-test counseling. So that makes a lot of difference. And after that we register the patient. We will screen them for eligibility. For treatment. So whether, not all the patients will be eligible. Only few patients will be eligible, in the sense when their CD4 is less than 200, or if they are in Stage 3 or 4, Stage 4 disease. Ok. If they are eligible, then those patients will be referred for ARV counseling. So in this counseling, I…the counselors will be the better people to tell you. I'll just brief you about what main the things they see. We send to the peer counselor. Peer counselor is the one who is the person who is taking the treatment. So she is…our counselor is from Karnataka Network of Positive People. She will impress upon what is the importance of taking drugs, so it's just…it controls the disease so that you can lead an active life, like me. So that will give an better example for them. Ok. Some other people are also there. By taking drugs, they are doing well. And in the counseling, the other counseling part will be taken by the counselors. We have two counselors, we have three counselors. Two from NGO, Samraksha, one from, provided by State Aids Prevention Society.
accessing care through the art program
karnataka network of positive people
post test counseling
state aids prevention society
Discusses the importance of ADHERENCE and the kinds of COUNSELING SERVICES that help with it.
They stress upon, they just look upon, the main thing is adherence, whether the patient is adherent or not, and what are the factors which may affect his adherence. For example, his caretaker, if there is a caretaker, the adherence will be definitely better. And how about his financial resources, how about his social circumstances, how about his past records of adhering to the treatment, other issues will be tackled by them. And usually it takes, we expect them to do faster, but usually it takes two to three counseling sessions. And we have seen, the better the counseling sessions, the long term adherence is not a problem, because the understanding is a very difficult thing. Ok, then they do speak about all these side effects, because they shouldn't land up in some other hospital, or they should not discontinue the drug on their own. Because… we don't talk about lot of side effects. But when you are starting other drugs, say generally, all drugs will have side effects. The patient will be worried. Why are you talking a bout side effects, they __, definitely it must be much more. What we have seen is not that much, but still we speak about it. It is a new terminology for the patient. Not in any other thing where…for example, you are starting the treatment for a TB or sugar or diabetes or hypertension. No one will go for this process. So the patient will be, what's this, why they are talking much about this. And after the counseling has been done, it will be cleared. Then we sit and discuss. And we'll see how better we can help apart from starting treatment, to maintain it. Then we'll start him on treatment. First 15 days, we'll give the tablets. We'll see for, observe any side-effects. And then we'll switch over to monthly doses. We'll give once in a month, and we'll ask them to follow up once in a month.
factors that affect adherence
long term adherence
The process of HIV TESTING AND COUNSELING and ADMINISTERING ART as prescribed by NACO GUIDELINES.
When they are coming, we'll check the strips and we'll do the counseling. And again adherence counseling will be done. Each time, when the adherence counseling will done. And we'll follow up once in three months, we will give to the test prescribed by NACO, as per the guidelines. Once in six months we'll do a repeat CD4 count, and as and when required, the appropriate tests will be done here.
hiv testing and counseling
repeat cd4 count
Talks about OPD and when patients have to come in.
(J : They have to come everyday in the first 15 days?) No, no, no. It's on OPD. They can take in the home itself. We're not admitting the patients as such just to initiate the treatment. And there are other centres, people do, in other centres people do like that, but in our centre we are just giving the tablets to the patients. And we have found out that it is, see we have started around more than 300 people. Maybe…very few, maybe around 5% maybe they had a very severe side effects. They have come and landed up here. But majority of them, no. they can manage.
LACK OF PEDIATRIC DOSE is a problem.
(J : Paediatric doses?) Ya, the problem with the paediatric dose, I mean, exact paediatric dose is not there, because fixed drug combination of paediatric dosages are not available in the market. Whatever the tablets we have, we are breaking it up and giving. So maybe…technically maybe it is not right. But still it is helpful for the kids.
fixed drug combination
lack of pediatric dose
PEDIATRIC DOSE FORMULATIONS is generally not available in FIXED DOSE COMBINATION which becomes a problem for ADHERENCE.
(J : It's not available worldwide or only here?) No, no. it's not, fixed dose combination, I don't think, as per my knowledge it is not available. Fixed dose combination, majority is available in India. Paediatric dose formulations are available wherein syrup forms, not in a tablet forms. In some in a tablet forms, but not in a fixed dose combination. And adherence will become an issue again if it is not in a fixed dose combination. Taking three tablets, and giving this, all such problems will appear, occur.
fixed dose combination
pediatric dose formulations
Discusses the percentage of PATIENT LOAD who are CHILDREN.
(J : Do you see a lot of children?) Ya, we see around ten, eight to ten percent, maybe. So we have, so far around 15 children we have started. More than that, between 15 to 20. All are doing well. But we are, nowadays we are getting more children, as the program is picking up, we are getting more children.
Talks about how some people get TREATMENT and others do not.
(J : How many patients so far?) We have registered more than 1000 people. So around that only 50% are eligible for treatment, around that around 40% have been started treatment, around 300 and odd. Rest of them have, to the. Some cases would have expired by the time we start treatment, because they are very chronically ill, in the advanced stages. The second thing, we would have referred them to the other centres which are available in Karnataka. The third thing is, they would have come, one or two counseling sessions, they wouldn't have come back. Maybe they are…we are trying to find it out, maybe there are other reasons.
eligible for treatment
registered more than 1000
Talks about the unreliability of STATISTICAL ANALYSIS when talking about the RISING HIV INCIDENCE RATE.
(J : Do you see this number growing up?) Definitely. (J : 5.1 million estimate right?) Hard to comment, because that is, they have done through a statistical analysis. Must be scientific. Definitely it will be scientific. But what we are seeing is newly, new, as the program is picking up, lot of people are coming. I am seeing, it is becoming 50 a norm. New or old or whatever it may be. But still we have registered 1000 people. It is picking up slowly. Maybe the other way around…two things are there. I can put it the other way, the statistics may be wrong. The other way around, people may be aware of it, but they are hesitant to approach for the treatment. And the second may be a possibility. Because we are getting a patients from very remote villages who have never come to a city. So if it has penetrated to that remote village, definitely the incidence must be more. Maybe people are hesitant to catch up, and as a, as we collate, we just speak, the problem is everywhere. So the statistics part may not be wrong. The documentation is not uniform one all over. Because they would have seen, and they wouldn't have come back. The other way around.
rising hiv incidence rate
Discusses the number of ART TREATMENT PROGRAM CENTERS in KARNATAKA and the issues with MANAGEMENT OF RESOURCES and other issues that comes up.
(J : How many centres in Karnataka?) At present we have three centres, one right now in Bangalore, one in Mysore, one in Hubli. (J : They come here from all over the state, though?) Ya, they can come from all over the state. Preferably, we encourage, we will give the option to them. Ok. Initially we are, we can, nearest centre whichever is there you can approach it. And once if you start ARV treatment, nearest centre, initially they'll be enthusiastic, definitely. But after that, the economics will come into the factor, I feel. When the program started, initially it was only in this hospital, and later it was, after three months it started in Hubli. Quite a few number of patients, they came, they took. But then later, after three months, they got tired, managing the resources and all. Then they asked for the nearest centre. Even if the 50 rs difference also, whatever the economics, still they prefer to save that. So on a long run, it won't work out for a patient, because adherence will become a problem. The other issues will crop up. So not only the drugs. Maybe the government is providing free of drugs. Works somewhere around 1000 to 2000 rupees. The other part should be taken care, which is the basic needs. And they do as per all they…bus pass concession. Even then it won't work, I suppose.
art treatment program centers
management of resources
Talks about how the ART TREATMENT CENTERS operates.
(J : This is the only centre in Bangalore?) Ya, Bangalore city. And surrounding districts. (J : How many doctors are there?) See, actually I work here from 9 to 4. So we will, any emergencies, other things will be, we'll refer to physicians. It is in the same complex. If it needs an admission, we'll see to it that patient will be admitted. And some cases where they need just a care, so we have a network of these NGO's will just see to it. Whether, if the patient is quite sick, we will see to it whether he can be accommodated in any of these centres. But as such, all the people will expect patient to be admitted and just desert them and go. So many other reasons, where the patient can be managed in home. So there is a caretaker, caretaking is a problem. So I doubt, even if you open 100 more care centres, the scarcity will be there. So today one patient had come. I saw the way he was admitted and he was discharged in a different hospital. And he can be managed in home. Just because of HIV the attitude will change.
art treatment centers
Talks about the initial hesitancy for PATIENTS to enter the program and TREATMENT OF OPPORTUNISTIC INFECTIONS.
(J : Many people come for opportunistic infections?) Ya. (J : how many?) As such, opportunistic infections, those people will be, many of them will be needed for treatment. Now many people are approaching, here what happens, if the husband has, the wife will get tested. So we will put them on opportunistic prophylaxis. They will be doing well. And those people they are approaching, many people are approaching now, they are not hesitant. When the program was hesitant, when the program was started, people would be hesitant to enter this, now no one is bothered. It is just another OPD, just like surgery or medicine.
treatment of opportunistic infections
Most of the PATIENTS are from LOW SOCIO-ECONOMIC BACKGROUNDS
(J : Economic profile of patients?) All of them, most of them are low. Most of the. Very few are middle. But most of them are from a low social background
low socio-economic backgrounds
Discusses ACCESS TO MEDICINES for the MIDDLE CLASS.
(J : But middle class is still able to buy the medicines from the market?) Maybe because , I don't practise as a HIV specialist outside, maybe we don't know what is the exact, how many prevalence are there. Maybe the private people would be a better persons to tell how many are there. But we have seen some middle class people who are coming. Those middle class people who are coming, they have exhausted their resources and have come back here.
access to medicines
Discusses the EFFICIENCY OF DISEASE TREATMENT.
(J : inaudible) Ya, as far, so far in our program, definitely. They will continue to believe. Because there are other advantages are there. The productivity of the patient is, the productivity will be there, and the thing is, the burden on the hospital will be reduced. And if you take the other thing, opportunistic infection treatment, all such things, if you look at the Brussels model, the other way the expenditure will be cut down. Initially it may look big, but repeatedly treating the same patient, the other burden will come down. Maybe people will be aware of the thing disease, and they may seek the thing, and they may, behavior attitude may change.
efficiency of disease treatment
opportunistic infection treatment
Discusses the feasibility of ADMINISTERING THE NEXT LEVEL TREATMENT.
(J : What about the next level treatment?) Theoretically, they say five years. But I don't know what's happening in the highest level. Definitely, we all have expressed the feeling that they should be a provision for alternative regimens. That, you can ask these poor people, Aids Society people will be the better persons, administrative people.
administering the next level treatment
provisions for alternative regimens
The need for the patient to have a good CARETAKER SUPPORT and be ECONOMICALLY INDEPENDENT.
(J : Biggest challenge?) Biggest challenge is the support for the patient. So that's the biggest challenge. If they have a very good caretaker, then many of the problems will get solved automatically. So that's the biggest challenge, because anyhow at present the government is providing the support, so the, that's not a problem. The challenge is that hey should have a good caretaker support. And to certain extent, they should also be economically protective. So minor things they have to look after. For example, some drugs, some opportunistic infection drugs the government is providing it. For a large quantity, it will be tough maybe. So at least something they can…they should be economically dependent on themselves, rather than dependent on others. And the other thing is, other thing is, when they are giving ART free of cost, they expect everything to be free. That attitude should be gone by the patients.
free of cost art
opportunistic infection drugs
(J : Many of them are leading a normal life…) Ya, ya, many of them are leading a normal life. Majority of them, 80 to 90% are leading. And more so, women are very keen on going back to work. A majority, almost 100% of women, they'll be, their first thing is, I'll take the drug, I'll go back to work. I want to go back to work. Majority of men, ok, I'll see, I'll take the drug, if I become well I'll go back. So that is the face exactly they put. So the women are always better, compliance-wise, otherwise, compliance-wise also better, and they take their drugs regularly, and they want to go back to work. They want to be not to burden the others. In fact, the other, the other way around the male people, what we have seen is , this is the difference.
The difference in COMPLIANCE RATES between men and women.
(J : Do people start ART at the right time?) No, we have lost a few patients, but some, majority of the patients had associated illnesses. Giving an ART…
starting ART therapy at the right time
MORTALITY RATE of the PATIENTS
Ya, very few were there, because associated illnesses, some were very sick before we started. And 14 people or 15 people expired. And…One of two we didn't expect. Maybe not, a majority, none of them are directly related to drugs as per se.
Discusses the success of the ART DRUG THERAPY PROGRAM.
(J : People administering drugs have to be very careful…) Ya, ya. (J : What has been their response?) They are doing very well. All the children are doing very well. None have got any side effects. No casualties. Their growth and all, parameters and all, are improving. Their morbidity, number of infections have come down. So, maybe one or two, one problem, because of the fixed dose combination, little bit maybe, one drug may be more. But still…they are doing well. It has benefited the, the other way around.
art drug therapy program
fixed dose combination
Talks about the perception that MORE WOMEN ARE HIV INFECTED now.
(J : Why are more women affected?) No, see, it do happens like, women will be diagnosed early. So, here what we see is, when the men land up, they will be in advanced stage, they would have diagnosed and, then the contact ___, then we'll ask the spouse to be tested. So then the spouse will be tested. The other way around, the husband would have died, the woman would have got tested later, because of reasons. It's not the outliving the thing, the thing is they have been diagnosed early, what I feel. So, here so many people. Today we started one person on ART. So his wife has been tested today. So maybe she will be in an early part of infection. Because males would have acquired infection long back. And they would have got married. Say before marriage they would have got up to 5 years or 6 years before. Then they would have transmitted to their wives. So by the time it reaches to the wife, maybe there'll be a gap of 8 years. Approximately, because…many of them have a high-risk behavior before marriage. Then they would have left that high-risk behaviour. So they would have got diagnosed after ten years after acquiring. The woman will be in the static phase. The other way around, women outlive because the PPTCT program they will be diagnosed first. So they'll be, the very concept is, they would have acquired, yes, after their marriage, because within first two years many will go for pregnancy. So they would have got diagnosed earlier. Then they would have traced the husband. So naturally you feel that women outlive the thing. If you calculate probably time of acquiring and, what is that, in point, then we can say, better we can say, women are surviving more or men are surviving more.
high risk behavior
more women are hiv infected
Discusses the effectiveness of VOLUNTARY HIV TESTING.
(J : Do men voluntarily come to get tested?) Ya, when I ask for the reasons what we are taking in the people, nowadays we are feeling voluntary testing very few are there. Maybe in the voluntary counseling centre, there'll be a better percentage there because they maintain the records. Ya, some men before marriage, They go for voluntary. Some.
voluntary counseling center
voluntary hiv testing
Discusses MOTHER TO CHILD TRANSMISSION.
( J inaudible) Ya it all depends on the regimen and what they, regimen, what the drug regimen they give, what the feeding option they take later, and depends on the mother's viral load condition, advanced stages or not. So…we have seen, that naturally, even without medicine, risk of transmission is 30%. But by giving, 80 to 90% transmission can be prevented.
mother to child transmission
Discusses the PATENT LAW AMENDMENT.
(J : Is there a debate in the medical community about the patent law amendment?) Ya, it's going on. (J : What do you feel?) No, because they say that new drugs, that is what I understand, new, if they get a new drug formula, that will be patented and that will not, not can be made as a generic. And the drug will be costly, it will be monopolised by one person. So they say it will be applied for henceforth, whatever the new drug comes. Some say it is, whatever maybe, if it is monopolised, the cost of the drugs will increase. Then whichever the newer formula, comes, it will be a better one compared to any older one, so definitely it'll affect.
patent law amendment
Discusses public perception INCREASING DRUG COST.
(J : Many people aren't concerned with HIV drugs…) No, people are, many of them are talking about the thing. Many patients are aware that the Crocin tablet also will become costlier. People are aware it, in their own way.
increasing drug cost
(J : How do you sustain yourself) No, because we are practising, we have been…right from my undergraduate days, we have been in a government hospital. We are adjusted to this. Maybe, the other way around, like, if you're in a different setup and coming here, it'll become difficult. But the thing is, I'm a paediatrician. After this, In the evening time I do practise paediatrician, entirely different thing. So definitely it'll drain off your energy, because you'll be seeing sick people. Some are dying and all. So sometimes you lose your enthusiasm, definitely. But other way around, after this, I'm not in, I'm doing a separate thing, entirely, where…so it switches , my mind will get switched from there and here. So neither I get tired of that or tired of this, therefore. Ya definitely, at some point of time, all these chronic diseases no, you feel snapped off.
Talks about how he manages stress personally.
(J : Vaccine trials…) Ya, if it is a Phase I trial, it may take a lot of time to… (J : Are you hopeful?) Definitely, because so many things are happening, definitely.
Shots of the mic, general… chatter..
phase i trial
INTERVIEW WITH THE COUNSELLORS:
(J : Name and what you do)
R : My name is Ruth, working for Bowring Hospital from 1st of April, since 2004. I'm from Samraksha, an NGO working for HIV/Aids. (J : What do you do?) I work as a senior counselor…for patients. Basically work as a counselor.
P : My name is Purushottam. I'm a counselor from KSAPS. I've been working here for about 4-5 months.
(J : Both of you are trained?)
R and P : Yes
R : Both of us…
Two COUNSELORS from two different NGOS introduces themselves.
Describes the scope of their work.
(J : What's the nature of your work?)
R : Basically, see the patients come and they're screened by the doctor. After which, once it's said ok that they can be started on the program, they come in for counseling, wherein they register again, and counseling is started again. So from there, we do additional counseling sessions. We look at their health status, we look at whether we can start them off on medication, their CD4 count. We tell them future what we can do, and after about 3-4 counseling session, the medication is started, so. There's lots of issues that we take care, like psychosocial aspects and other things. So once that is cleared, according to the procedures required here in the centre, once that is cleared, then they're started on medication.
Discusses when and how people start TREATMENT.
(J : How much time does the initial counseling take?) It depends. For example, if we feel that the patient will take the drugs, then it can be done within 15 days. For very sick people, or those who don't have caretakers, or some other problems, it may take up to 1 or 2 months. For people with TB, for instance they have to be treated for that too, so we can give them the medicines only after about 1 1/2 months.
Talks about how long COUNSELING SESSIONS take for each patient before they start ART TREATMENT.
(J : Do they have to come here everyday?)
R : It's done once a week, depending on their convenience. If they're from the hospital, then they can come faster than a week. Otherwise, if they are from far off distance, once a week, we try and make it. And, to hasten the progress, basically, to start off ART as soon as possible. But we have to finish counseling, at least 3-4 sessions before that. To make sure everything's fine, and they're stable, and other things don't hinder, in future. All that is clear, and then we start them off.
Discusses their PATIENT WORK LOAD and how they manage it.
(J : How many patients in a day?)
R : On an average, I think about 15. 15-16 patients. We take about 15-16 patients on an average. We are three counselors, so it's kind of distributed among us. The workload, we are trying to cut down the workload, so…each of us get 2-3 about. (J : Group counseling?) Ya, we do group counseling. As and when they come in for medication, we have about 6 or 7 patients, on a particular day, coming. If there are lot of people coming for medication, even 3 or 4, we do a group counseling and we try to make them interact within themselves to see how one is coping. So that way, you know, help someone else. So group counseling is done on a regular basis, by us and by Samraksha, Bowring Hospital, and by the peer counselor also, from KNP+. So that's a regular activity.
patient work load
(J : Do you see an increase in the number of patients?)
P : Earlier, many people didn't know about this facility. But now we get a lot of referrals, from all over Karnataka. If the number of centres goes up, then the number here could decrease
(J : Are the 3 of you able to handle it?)
P : Yes. Right now, we can manage. Let us see what will happen…
R : Initially, we had lots of problem because there was only one counselor over here, and we had to have…and one doctor, plus Dr Chandrashekhar, of course. So it was very difficult. Now that there are three counselors, 1 from KSAPS and 2 from the organisation, plus the peer counselor, it's much easier. But also the workload is much more because a lot more people are coming in; a lot more people are aware that there is a centre like this giving medication. So definitely they are coming. And apart from that, the other two centres also, from Hubli and Mysore also, giving the same program. So we reshift them if they are coming from long distance, we see what is more convenient, and then they can…depending on what they want, they can go to that place and access treatment
Talks about MANAGING INCREASING PATIENT LOAD.
managing increasing patient load
P : If they are from Bangalore, we visit their houses and confirm the address before starting treatment.
Discusses involving FAMILY OR FRIENDS into the COUNSELING SESSIONS.
(J : Do patients come alone, or with their families?)
R : We have people coming in…Sometimes they walk in alone, or some of them haven't told their status to their house, to their, whoever's looking after them. The second session would include one person from the family, or we'll give them time. It's n force, no fast rule that they have to go and bring one person. Depending on their comfortability. But definitely one person has to be included from the family, and there are few people who do not have family members, who are abandoned. Then they bring their friend, or some colleague, somebody, some relative also, or people coming from an organisation. If they have case workers over there, the case worker will take on the case and we will ask them to stand up for this person. Then they can start ART.
family or friends
Talks about STOPPING TREATMENT.
(J : Any cases where they started and stopped?)
R : That's only in case they've reshifted to a more convenient place, such as Hubli or…and of course people who expired on ART. (J : No others?) Not really. I mean, they, they might go in for an admission and then they might come back. After three four months, but definitely we see them coming back. Maybe just one or two who do not come back. For other social reasons, family reasons, whatever.
(J : Are people scared of the treatment?) The first time, they feel that they might find it difficult. We tell them, even diabetics or people with hypertension have to take lifelong treatment. Then they accept it a little more easily. And we also tell them that there is no other cure. There is no alternative. Then they are ready to take the treatment. This is why we extend the counseling sessions, to make this clear.
patients deal with the treatment
How PATIENTS DEAL WITH THE TREATMENT.
(J : How long is each session?)
P : 30-40 minutes
R : One hour
counseling session length
Discusses how they take care of their own personal STRESS.
(J : Do you go for therapy yourselves, since you're so constantly exposed to this?)
P : Till now we haven't undergone any such kind of therapy but…
R : We have sometimes a yoga session, at __ or office or something. You know, do something for ourselves, as a group, here. Otherwise it becomes a little too stressful for us, so…That is definitely taken care of, ya.
Describes the COUNSELING SESSIONS.
(J : What kind of people come?)
P : Right now, we're seeing a lot more men coming in. But on an average, the female adherence rate is higher.
(J : Children?)
R : We have about seven children already started on ART. We have ,we do have lots of children coming also. From NGO's, plus from the family.
(J: You talk about prevention issues also?)
R : Ya. We do talk about prevention. As in, if they have not told their spouse, and their spouse is also, you know, she's at risk of being infected. So we do a family counseling, we do spouse counseling. Again family counseling is there. Sometimes marital counseling is also needed, wherein you tell that person, you know, you are probably at risk of getting the infection, so we use advocacy of condoms. That is definitely done, depending on what the situation requires. And prevention of other OI medications also…I mean infections. In the long run they might be susceptible to getting some other kind of infection. So we tell them how to take care of their health, come once a month for regular check up, medication. We give that all during the counseling sessions.
regular check up
Discusses ELIGIBILITY CRITERIA and how the REFER PATIENTS to various organizations.
(J : What happens to people who don't meet the eligibility criteria?) R : There are options for them. See, this is not the only centre. This centre is basically started for people who need ART, free of cost, and who will not be able to afford it. Those kind of people we'll start them. But there's no rule that only people who do not need it, I mean, don't have to come. They can still come. But there are other organisations, such as Seva Clinic, or Freedom Foundation, wherein we trace and see where it's most convenient for them, in that locality. So we try and put them onto that organisation, wherein long term care plan, on a monthly basis, is done free of cost. Registration is done free of cost, on a monthly basis. Medication also is given. OI medication is given, free of cost. And counseling also is done free of cost. So we put them onto a place like that. Till when they require this kind of treatment. And the, of course the requirement here is CD4 of less than 200, clinical part of it.
drugs free of cost
Talks about the challenge of ASSESSING ADHERENCE when dealing with a patient how meets all the ELIGIBILITY.
(J : What's the most difficult part of it?)
P : Sometimes, the person would be eligible, but would not have a caretaker. That's a problem. Or if they live far away, and don't have a caretaker.
(J : What do you do then?)
P : We observe how regular he is for the counseling sessions. If he comes frequently enough, then we conclude that he's probably going to adhere to the treatment.
Discusses HOW FREQUENTLY MEDICATION IS GIVEN and the importance of COUNSELING SESSIONS.
(J : How often do they have to come before they get the medicines?) The first time they start medication, it is given for 15 days first, due to monitoring reasons. And they come after 13 days. So always, we try and start it off from day 1, that they have to come beforehand to take medication so that they don't run out of tablets at any point of time. So first 15 days. After that, once if they don't have any, you know, reaction to the medication or there's no side-effect, then it's given on a monthly basis. Monthly basis.
(J : And they have a counseling session whenever they come?)
R : Ya, every time they come in for collecting of medication, they have to go through a counseling session. Because then other psychosocial aspects come – family problems, going back to work, coping with side-effects, coping with the day-to-day taking of medication. Maybe someone's taking more than – TB medication plus this, or other OI medication. It becomes a lot of number of tablets, that problem, or marital issues come in, sexual issues come in. So we have to deal with it on a monthly basis, as and when required. Plus advocacy case also we do have. Nutritional support someone will be needing, or reference, or admissions. So there are lots of things to handle that…
coping with side effects
how frequently medication is given
Talks about the NUMBER OF PEOPLE CURRENTLY ON THE ART PROGRAM and what happens if there is an EMERGENCY.
R : 900 and more have gone through screening. Counseling, after screening those who are eligible, we have more than 500 who are registered for counseling. And on ART we have about, till date, 308. On ART at the moment.
(J :If they have an emergency in the middle of the night??)
R : Right now we don't have, for people who are coming from far off or even from Bangalore, for that matter. We don't have immediate access, I mean, in the night it's going to be difficult for anybody to come. So what we do is, if they have a family doctor, some doctor, clinic or a nursing home next to their place, we try and link them up. In case of emergency, you can go and access this place and come back to us in the morning. And till working hours, our line is available. Anyone can call back, talk to the counselors via phone. So we try and do a counseling session on the phone, if required. Or they can talk to Dr Mahesh and he will tell them what medication to take, what to do next, or if they have to go for admission, he will, he will definitely, or one of us will tell them what to do next.
number of people currently on the art program
P : We'd just like to tell anyone who suspects or has discovered that they have HIV that there are three of these centres in Karnataka now. With ART, they can lead a normal life, and they don't have to be scared.
(J : Are they hesitant to come here?)
P : At the beginning, yes.
R : Inititally, initially. Initially, because it was called an ART centre. People would call it an HIV clinic, or something like that. Then they'd say, oh you are going to the clinic. So that was the time when they were hesitant. Now it's become common. People used to peep and see, first, initially. Ok who's coming, who's looking. If you're looking sick they'll automatically, you know, put you as HIV+. But now that trend is not there. People are very easily accessing the place.
Talks about the initial STIGMA ASSOCIATIED WITH VISITING ART CENTERS, which is a trend that is now changing.
stigma associatied with visiting art centers
Talks about how people heard about the ART CENTERS.
(J : How was the initial response?)
R : It was inaugurated on April 1st.
(J : how did they get to know?)
R : It was published in the newspaper also. So lot of people, and it was, it's already being spoken on radion. On FM, I think, it's being told. So some people, you know, I've heard it on FM, or I've seen it on TV. Or I've seen it in the newspaper. I think some of the local channels are advertising about this, or…we do have people coming from the media. That's why…
Talks about JOB SATISFACTION.
(J : have you personally faced any difficulty due to your working here?)
P : No, nothing like that. On the contrary, when a patient who was initially in depression comes back after two-three months looking much happier, then we feel good.
R : What I feel is, it's…of course there are lot of people who ask, why can't you do something else which is more productive, or, you don't have to go through stress. That's a big word for us. Because day in and day out, Monday to Saturday, you see the same cases and the same problems. But if you see the long term thing, you know, you get lot of work satisfaction. Because you're helping not only the individual here, you're helping the family too. Bringing back normalcy to one person's life. And to eradicate stigma and discrimination, to tell them, you know, there is hope. You can still go on, be normal. It's a big thing. Definitely satisfactory.
hiv stigma and discrimination
A PEER COUNSELOR from the KARNATAKA POSITIVE PEOPLE'S NETWORK introduces themselves.
INTERVIEW WITH KNP+ MEMBER (IN SHADOW)
(Q : How many years have you been working here?)
Counselor : From one year.
(Q : As what?)
C : I work as a peer counselor in the Karnataka Positive People's Network. I was sent here as a peer counselor since I'm on ART myself.
(Q : What's a peer counselor?)
C: Since I'm on treatment myself, I can share my experiences, and can explain what exactly the treatment is about.
(Q : What does living with HIV mean to you?)
C : I feel that a positive person should be positive towards life as well. We aren't inferior to anyone. We can live as well as, and even better, than normal people. And I live with this attitude.
karnataka positive people's network
Talks about his role as a PEER COUNSELOR and how his experiences and HIV POSITIVE STATUS affects his work.
(Q : How long have you been on treatment?)
C : One and a half years. I paid for the medicines for the first seven months, with some help from an organisation. After this centre opened last April, I've been taking medication from here.
(Q : It's free?)
C : Yes
(Q : Are more people coming after it was given out free?)
C : Yes. Some organisations who work in this area aren't able to give ART free, so they refer people here. And the number is increasing.
(Q : What is their reaction to seeing you, a positive person?)
C : That was our intention, that they come here and see a positive person like them being able to function as a normal counselor. I can tell them about how I lead a normal life. Some even say that I'm lying to them, and I can't be positive! But when I prove that I am, they say, even I want to live like you.
(Q : So they're more open since you're positive too?)
C : Yes, they're more open. Their problems, their family situations. If our organization can help in any way, we offer assistance. We invite women to our monthly positive women's meeting at KNP+. We've given training in making paper bags, gel candles, to help in income generation. Even I used to pay for my medicines at first by making paper bags.
function as a counselor
hiv positive status
monthly positive women's meeting
Discusses her husband's TREATMENT REGIMEN.
(Q : How much did you pay then?)
C : I used to pay 700 rupees, and an organisation paid about 600 rupees.
(Q : What about other medicines?)
C : I only used to take one other medicine, which the government was providing. My husband is not taking ART right now, but his other tablets and his vitamin capsules comes to about 3300 every month.
(Q : Why no ART for husband?)
C : He's past the first stage now. The medicines that are given here don't work on him.
(Q : Then where is he getting from right now?)
C : We've stopped ART right now for him, but some problems have arisen, so we have to start again. It will cost about 400 rupees, but we can't afford that much.
LIFE Talks about her work, why and how she started.
(Q : Is life exactly the same as before?) I never really worked before, even after ten years into marriage. I started working only to pay for my medicine. It was difficult at first, I was under a lot of stress, but I've adjusted now. I'm just the same as before.
(Q : How did you start working here?)
C : I used to go to an NGO which paid for part of my medicines for six months. After that, I approached them for a job and they sent me to KNP+. I attended a few support meetings, and then they gave me a job.
(Q : How did you think of it?)
C : Many other positive people would have lost all their self-confidence after finding out they're positive. Telling them that they can live with their disease, helping them recover their confidence brought me a lot of joy. That was why I started.
paying for medication
Talks about the kinds of problems patients come to the counseling for.
(Q : How many patients do you see everyday?)
C : I see at least 2-3 patients in the time I'm here. Then there are others who come for follow-ups. (Q : How many?) 4-5. (Q : So about 7-8 everyda?) Yes. Yesterday there were 13 people. It varies.
(Q : Have you seen a change in the people who come?)
C : Yes. There are some who were afraid of the side-effects at first. Others didn't really believe it could help them live. One lady had a very adverse reaction to the medicines, and she said, this happened because I listened to you, I'm dying because of you, and even tried to hit me. But today she tells me that she's much better and she wants to work like me. I feel very happy when I hear this.
(Q ; But the type of people)
There are several changes. Some people come here as patients, others see it as simply being a chore. Some people have given up their unhealthy habits.
patient work load
side effects to medication
Talks about the TYPES OF PATIENT that come and the PROGRAM SUSTAINABILITY.
(Q : Has the profile changed Do only poor people come?)
No. Not only the poor. Even those who aren't poor feel that they wouldn't have enough to pay for the treatment. Villagers travel for 2-3 hours to come here and receive the treatment.
(Q : Do you feel that this program would continue?)
I hope it does, since I'm also on the program. Many others like me are also coming forward since the treatment free. So I think it would be good if it continues.
types of patient
Talks about her CHILD and how he has been COPING.
(Q : Children?)
One son, 8 years old. He's not positive.
(Q : Where do you leave him when you go to work?)
I drop him off at school and then come here. When he gets back home at about 4.30, his grandparents, father are all there
(Q : Does he know?)
He's only 8. He knows his father is sick because he's bedridden. But since I'm as healthy as before, he doesn't know about me. He keeps asking about his father, why does he sleep so much? We'll definitely tell him when he's more mature. I want to live at least so that I can give him a good education and see him grow up, and that's why I take the treatment..