Re: The economics of employing people living with HIV

[Guest guest]

Dear Forum,

This refers to Dr. A. Rajatashuvra's concerns about a model which is

economically viable over time.

I can only speak from where I stand and my experience being HIV positive for the

last 13 years. I've never been symptomatic or off from work for any long period

due to the virus. Yes, I've gotten the flu and other ailments here and there,

but nothing long enough to disturb my working ability or causing an employer to

let me go.

I believe that it is very effective and empowering for an individual who is HIV+

to be able to work and feel as " normal " as possible. I realize the medicines

I've been on plays a key role in my health and medical care is very important,

however, I believe that other social issues also play a vital role to one's good

health and well being.

Suresh.

E-mail: [suresh_seeram@...]

[Guest guest]

Dear Forum,

I want to thank Dr Rajatashuvra for two things. One is that he has been

prepared to share his economic viewpoint of PLWA's with some honesty based

on so many limited observations. The second reason I am grateful is that his

opinion is shared by the whole HIV public service apparatus in India from

NACO down. You ask any AIDS bureaucrat to explain about GIPA and all you

will hear is of course we want token representation of positive people on

our forums and focus groups not that we value their opinions because they

are sick, limited in intelligence and likely to drop dead any minute, but if

the donor community want us to have them and recognise their presence well

we will. But they should say whatever they have to say and then sit down and

shut up while we go about the business of managing this crisis. That is GIPA

in part in India.

So having set the tapestry I now have to tell readers that if you hold this

view about HIV patients then you should also hold it for cystic fibrosis

patients and diabetics and people with coronary heart disease, those with

poor liver function, those with higher than normal blood pressure because

all are living with chronic conditions but most work long, carefully and

very hard.

75% of positives in Australia are in the workforce. Many are also active

participants in National AIDS councils and State AIDS Councils throughout

the country. They are at the cutting edge when it comes to treatment; they

train nurses and doctors and para medics; they also participate in training

law enforcement officers. Most of their effort is honorary. Their work hours

are long and their commitment significantly more diligent than the paid

public servants who facilitate their work.

In fact it is rare indeed, except for the appointment of some executive

staff, to find one person on the Board of Directors who is not him or

herself HIV+.

It is the fact that it is so much part of their lives that they can stay

focussed and relevant. It is also a fact that when a policy change is

proposed by a related public service organisation they can immediately

visualise the unintended consequences of the decision and have it reversed

almost immediately before it has the chance to damage the campaign for a HIV

free environment.

I suspect that the recruits that Dr Raj was visualising were the people who

he must have seen occupying beds in the many hospice settings. He would not

be visualising the medical doctors who work and who are HIV+ and he probably

wouldn't have seen the HIV+ lawyers either who carry normal workloads in

their law firms. He probably wouldn't notice the many +ve staff who work

around him in the various charitable hospital settings; the ones that

co-ordinate D.O.T. programs for HIV and TB. He probably wouldn't have

noticed that the longest serving honorary Presidents in the very many NGO's

and umbrella groups that work tirelessly 7 days a week and more hours than

the average AIDS Bureaucrat per day are themselves HIV positive.

He might not be aware of the 24 hour international monitoring of Medical

websites so that information relevant to treatment or toxicity warnings is

monitored and made known to HIV/AIDS organisations the world over.

He may have met some of the consultants who travel to India providing advice

and assistance in managing roll out of new projects and assisting in the

evaluation of same. Most of these folk, some with degrees and others with

PhD's, are also HIV+.

One of the difficulties of being in the workforce and living with HIV is

that you are less inclined to change jobs because you never know when the

next promotion is going to involve a medical examination and even if you

don't give your permission they will test for and note your HIV status. This

realisation makes you an even more loyal and dedicated employee.

I am sure that Mr Soni's concern is not primarily a concern of love for the

infected. Of course his actions in single handedly motorcycling around India

are motivated by love and concern but the primarily motivation is his

concern about the competencies and practical support being offered to

affected and infected communities. He, like me, has been 'sampling' the

output from VCT's and the often imaginary support services to which many

people are referred after they get their seven word test result. Like me he

has been wondering when NACO is going to stop spending money on AIDS

infrastructure and actually use some money directly by funding programs at

the community level.

We have only recently met each other via this e-forum and we will be teaming

up and comparing notes when I get to return later this year but please don't

imagine his concern is a mamby pamby compassion based approach. It is very

much an action based approach to a problem that despite the best efforts of

central government is still growing and in many places is still quite out of

control.

If positive people are actually hired instead of just being used, they in

fact perform and function much better than when they are depending on

themselves or their families for support. They buy better food and drink

better water and afford regular medicines and they even can afford the

necessary supplements to make sure that they function as mormally as a

diabetic or someone that suffers with blood pressure in the work place.

HIV is not disabling unless it is ignored. It does not induce insanity

unless it goes undetected for too long. It doesn't effect normal functioning

of a member of the work force unless that worker is stigmatised at work or

in his native place. India has so many myths to unlearn about AIDS and Dr

Raj has indicated that the learning has to take place at all levels.

We also have to learn the new lessons and no where is that more apparent than in

the many lost opportunities at the VCT level to effect behaviour change and

improve sexual health and safety knowledge. It is almost like it is there as

a census bureau rather than a behaviour change and support model. More will

be said on this issue especially as Birendra has the advantage that I don't

have. He can actually speak the local languages. We are planning a very

important reunion later this year. Watch this space!

I know so many of my colleagues in UNAIDS, International Red Cross, Asia

Pacific Network and even World Vision who serve long and fruitiful

ministries whilst living with the virus.

Thank you Dr Raj for opening up the debate to expose the real economic

viability issues.

Most of the + people I have alluded to that I know personally are in their

second decade of economic viability and a few are approaching their third

decade. That even beats some of the service lives of the public service

people whose decisons impact on that viability.

Geoffrey

E-mail: <gheaviside@...>

[Guest guest]

Dear Rajat and FORUM members,

The point is- is there a human resources policy that employers'

organisations like FICCI and CCI have for PLWHAs and other sick

people? It's like the lobbying for maternity and paternity leave.

These also are 'disabling conditions' which tell on productivity. So

what's new with PLWHAs? I mean there are employers' policies for TB,

diabetes, and even for people who have suffered heart attacks. As

time goes by there will be one for PLWHAs too.

It doesn't make sense to put ceilings or floors on percentages of

PLWHAs you need to hire. Humsafar Trust has a human resources policy

we charted out in close collaboration with the Lawyers Collective and

Doctors who can judge disabilities.It specfically slots wat happens

when you share your positive status with the employer (Humsafar

Trust).

We have just put in re-training modules, regular medical visits and

diet control into the employment policy. When I talked to our

counselor and said that we would take 20 per cent HIV positive people

into our staff from next year, she said that we had " already crossed

that long ago " . In other words there were more HIV positive people

who were on our staff but off our radar. So that was that and we went

onto other staff problem issues.

It's ridiculous to presume or assume that HIV positive persons have

disabilities or special qualities that make them more or less worthy

of " employment potential " . You're either a good worker or not and

that's the bottom line. Everything else can be adjusted or resilient

enough to take in one's stride.

India is a resource poor country where every rupee has to be

stretched a long way. The rupees are not always allotted for the

right reasons or rationale. Creativity, potential skills and even the

plain drudge work has all to be found a place in a sensible and

compassionate human resources policy. Whose drafting that?

Anybody who needs our human resources policy document may send in a

request and we send it as a word document.

regards

Ashok Row Kavi

Humsafar Trust, Mumbai Matro

E-mail: humsafar@...

[Guest guest]

Dear Forum

It is with a sense of disappointment that I see the debate around the

economics of involving people living with HIV/AIDS.

I think India is rich with this experience. We must understand that

the solution to a whole lot of issues especially stigma and

discrimination in many countries has been addressed with a very open

inclusion of PLWHA's at the highest level.

Let me site that there are many NGO's that are headed by PWLHA's but

they are not part of any network.

The example of the largest substance abuse/hiv/aids grass root

organization in India The Freedom Foundation is a classic case where

GIPA has been the driving force right from the time of it's humble

beginnings in 1990. People who doubt the validity of inclusion at the

highest level need to learn from such organizations

I do hope this will encourage organizations and people to understand

the people living with HIV/AIDS are the crux of the solution.

Regards

Beckerman

Public Health Policy Consultant

E-mail: david_beckerman@...

[Guest guest]

Dear FORUM,

This is in response to Beckerman's <david_beckerman@...>

message " It is with a sense of disappointment that I see the debate around the

economics of involving people living with HIV/AIDS. I think India is rich with

this experience. We must understand that the solution to a whole lot of issues

especially stigma and discrimination in many countries has been addressed with a

very open inclusion of PLWHA's at the highest level "

I have been involved with working with HIV/AIDS in Kolkata for now almost over a

decade. My area of work is in Communication in HIV/AIDS -and I work with BCC,

sensitization, mobilization etc.

I have not been following this particular debate that you mention in your

email.. but I do think that the issue of 'involving the PLWHAs is being

over-stretched.' Specially in light of fact of massive spread of HIV/AIDS in

very short period of time and also the fact of the huge numbers infected.

HIV/AIDS management is a matter of expertise and commitment. A PLWHA need not

have either. Also what makes us so sure that they want to work towards

prevention? Why do we attribute such high levels of altruism to them and deprive

us of the same just because we are not 'PLWHAs.'

I think this whole issue of 'involvement of PLWHAs at the highest level and this

being the crux of the solution' is being stretched much beyond the line that it

should be and much to the detriment of the whole issue of HIV/AIDS management. I

think this needs to be contextualized and re-thought very seriously at this

point.

PLWHAs need care and treatment, they need integration and not discrimination..

all granted.But why are you proposing them as managers, as visionaries, as

leaders?

I would like to understand your perspective on the above. My perspective I think

I have clarified.

Sincerely

Mallika

E-mail:<mallika_lal@...>

[Guest guest]

Dear Forum, & particularly Mallika Jalan,

I think that Mallika has answered his or her own question really. India has set

up HIV/AIDS management and expertise over many years.Almost all the NACO

expenditure until recently has been spent on infrastructure, training, career

development and a whole lot of other things that I won't describe lest I be seen

to be cynical.

Now where are we with the epidemic?

Still uncontrolled and getting worse!

Why, because people have failed to understand why and how the epidemic is

spreading. They have failed to consult with infected and affected communities.

They have implemented programs without focus testing for good outcomes. It has

been a top down approach.

No one is suggesting that there are not high levels of commitment amongst

uninfected people who are displaying incredible amounts of expertise and

commitment but the " massive spread of HIV/AIDS in a very short period of time "

indicates that we are doing something wrong.

We are targetting particular classes of people by discriminatory surveillance

systems. We are training people to provide services to the HIV/AIDS industry who

are completely out of touch with the affected and infected communities. We have

relegated positive people to the edges of society and blamed them for the

problems they experience. We have maintained laws and enforcement practices that

worsen the epidemic.

We failed to train and equip our allied health and law enforcement people with

information and assurances about how HIV/AIDS is transmitted resulting in

incredible pockets of ignorance and discrimination right where it ought not to

exist.

PLWHA's need access to medicine to enable them to live productive lives the same

way that diabetics need insulin. No where is there so much evidence of

commitment and expertise in India than in the 100's of positive communities,

staffed in the main by positive people, that have held back what would otherwise

have been a much worse case scenario in India. Not all the people who engage in

those communities of expertise are positive themselves of course but they have

learned how to listen and how to understand.

This is not a question of altruism, this is a question of best practice and

best practice comes from accurate information and instruction about sexual

health and safety which the whole community that is India needs to have. The

next generation is only going to be safe when young people are persuaded that

they need to understand the basics of sexual health and they are not going to

learn that from a policy of abstinence until you get franchised by marriage.

Even those who are married already are succumbing in larger than expected

numbers because of disempowerment and ignorance.

No one is wanting to disempower non positive people with expertise who want

to use their skills creatively but they need to be focussed and free from

discrimination. The kind of discrimination that creates a thought that goes like

this " What makes us so sure that they want to work towards prevention "

and " Why do we attribute such high levels of altruism to them. "

PLWHA's are politicians, accountants, lawyers, doctors, nurses, policemen,

judges, soldiers, construction workers, agricultural workers, transport workers,

public servants, cleaners, sex workers, corporate executives. Most will be

hiding of course and many even now will not even know their status because

either they think it couldn't happen to them or that if they have it they'd

rather not know about it because their life would then come to an

end.

They all have expertise and they need to be developing commitment.

Not all PLWHA's of course have the skills or the patience to be involved in high

level consultations in Delhi, or wherever, where policy is being formulated and

I would be the last one to even suggest that they be asked.

This epidemic is not going to be solved by the high level committees in Delhi or

anywhere else in India. It is going to be managed and controlled by community

based organisations comprising infected and affected communities understanding

where they are and how they got there and determining how to stop the infection.

To do that they are going to have to be resourced properly. They will need to

choose wisely who they need to help them and they will be the best judges of

which NGO's and which altruistic experts they can stomach to work with them to

effect the broader changes necessary in behaviour and health management for

those already affected. Agricultural workers who are positive can be trained and

equipped to work in their communities. Corporate India can include positive

speakers to reinforce sexual health and safety in the offices and workplaces.

Judges and lawyers who are thankfully already doing a better job that India

could have expected can continue to play their important role in ensuring that

justice is not only done but seen to be done. Laws need to be changed to ensure

that high risk behaviours associated with particular industry groups are

contained.

Obviously this relates to the sex work industry but there are many other

industry groups where information needs to become commonplace and these include

agriculture, transport and fisheries.

Thankfully for India many positive people are already managers, visionaries and

leaders. Treatment initiatives are being slowly rolled out to ensure they all

stay alive and well. Any program or consultation that does not include

significantly involved affected or infected people with capacity to be involved

in the steerage, not just the token one vote representative which is often the

case today, will be essential and should in fact be mandatory if value for money

is important.

This must happen at the SACS level even if they have to be dragged kicking and

screaming into a consultative process.

The reasons are obvious.

Look where we are now and compare where other countries are who were also

floundering. Indians are not stupid people but infortunately too much notice

is being taken of some whose whole perspective is to create a HIV/AIDS

bureacracy and fail to see the very clear directions as to how better and more

informed behaviours that are very much biological occurrences can be influenced

by useful safe sex information and how stigma and discrimination are still rife

and driving the epidemic underground due to irrational fears and anger.

Here is just another perspective from someone who has wandered around high

prevalence communities including some in Kolkota for the equivalent of two years

so far.

In the country I was lucky enough to be born in, which most of you know is

Australia, our epidemic doesn't even raise a colour bar on the global prevalence

graph.

This result is entirely due to positive people operating at the highest level

from the P.M.'s office down. For us it was the crux of a successful pegging of

the epidemic and contributed most to the whole issue of HIV Management and it

still does. Vigilance must be constant to be on guard for bureaucratic decisions

that will have longer term unintended consequences.

India hasn't even started that process yet but the mechanisms are forming, the

judiciary is doing wonders and the legal fraternity is shaping up.

All we need now is for the medical fraternity to either shape up or ship out of

HIV medicine and we will be well on the way to do two things; one will be to

actually find out how many positive people are actually here in India and don't

think the current official figures are anywhere near correct, and secondly to

start to measure a decline in the infection rate and one day we will work out a

system to actually be able to do that. We don't have one yet. I hope I too have

clarified my perspective.

Geoffrey

E-mail: <gheaviside@...>

[Guest guest]

Dear FORUM,

PLWHAs need care and treatment, they need integration and not discrimination..

all granted. But why are you proposing them as managers, as visionaries, as

leaders?

I could only hope that someone who claims to have been doing this work

(with people who are HIV+ I should imagine?) wouldn't recognize the simple

fact that humans are humans. Regardless of their ethnicity or even,

surprisingly, caste! Or HIV status.

As a result of this human condition, some folks are pretty blind, stupid

and ignorant. We must feel compassion for them. Why indeed, some of them

are in positions of significant power! (I'm thinking here of President Bush.)

And of course, as it so happens, some of the most marvelous managers,

visionaries and leaders I have known were coincidentally HIV+. Some of the

finest researchers, doctors, judges, lawyers--many are HIV+. You mean to

say you know no one like this? Most startling!

Indeed, I have known HIV+ people who were first rate--well, the term I had

in mind isn't for delicate company. Because, again, we are all just human

beings. Some have HIV. Some have Hep C. Some have diseases more insidious

like bigotry and ignorance.

These diseases are, happily, all treatable even while those treatments do

not make any of us immortal.

M.

e-MAIL <fiar@...>

[Guest guest]

Dear FORUM,

I just want to state that on the basis of the Sero status of a person, one

should not discriminate HIV positive person. If a person is capable of being

Manager of a multi-national company, why not to give him a chance even though he

or she is HIV POSITIVE.

A person living with HIV must be treated as a normal person and given an equal

opportunity as per his or her capacity.

I want to mention that the rights of person who is not infected must also be

protected and there should not be any discrimination with them. Otherwise all

the efforts of bring the positive people in the main stream of life would result

in complete failure of the mission.

No doubt that the people living with HIV / AIDS need our love and compassion

but, society can not afford to make them dependent. We would have to make them

self-reliant to support themselves.

I THINK WE NEED TO HELP THEM TO HELP THEMSELVES.

Best regards

Farhad Ali

Modicare Foundation, New Delhi

E-mail: <farhadali4u@...>