Re: Access to ART: The ground Realities

[Guest guest]

Dear FORUM,

Re: /message/10027

Mr. Nagrajan is right as per his perspective but carrying out a National

Program is little different from his perspective.

As you may be aware that ART program has been running from 2004 onwards here in

India and still there are scope for improvement in the service delivery. So far

as maintaining of adherence by yourself is concerned, very few people think like

you that is why LFU/Missed/Defaulter cases are increasing day by day and

consequently contributing resistance variety within the larger society.

In order to check similar problems, it is imperative to coperate with the

service providers while furnishing address proof or giving consent for home

visit.

Hope Mr. Nagrajan will expand his own perspectve for the sake of larger society.

Regards,

Neshat Ahmad

e-mail: <ahmad_neshat@...>

[Guest guest]

Dear FORUM,

/message/10027

I am so sorry to hear what mR Kumar has been, It is certainly a very harrowing

experience for a PLHA to keep testing for HIV so many times just to fit in the

system.

Thank you for sharing this experience, it looks like the Networks as well as the

counsellors have become part of " the system "

I can see failure at several levels here

Allowing a patient to run from pillar to post. 

No proper networking between ART centers.

Pretending that all clients need home visits or close monitoring is not treating

them like adults who are responsible. Spending more time on deciding if the

client is eligible for ART before starting ART would be the best.

Asking for address proof etc, naturally is threatening to patients with no

assurance of confidentiality. 

ART centers closing before 4 PM in many places. If counsellors see clients post

lunch, they could actually spend quality time counselling in ART centers.

The question that you ask about " why counsellor and not a support staff/ clerk "

I agree with you. I think mostly counsellors are giving information and doing

referrals and really not counselling. Maybe we should think of a different

designation instead of counsellor. Something like " intake counsellor " usually an

intake counsellor gathers information and then decides where the client should

go.

More important than qualification is the attitude of the counsellor. Checking

this out is better than verifying the certificates passing MSW / psychology.

I agree that counsellors must be sent on regular training, but keeping a center

closed is really very sad to know.

Thank you for raising your voice. 

Magdalene

--------

Magdalene Jeyarathnam

Director - Center For Counselling

18 Radhakrishnan Salai, 9th Street,

3rd Floor, Mylapore, Chennai 600 004

www.centerforcounselling.org

email- magdalene@...

telephone - 044- 42080810, mobile - 9884100135

www.centerforcounselling.blogspot.com/2008/02/our-work.html

[Guest guest]

Dear Forum

 

/message/10027

This is with respect to MR. Ahmad Neshat's response to the problems faced at the

ART center by Mr. Nagarajan.

I find the said response very insensitive.. Mr. Nagarajan has mentioned in

detail the pillar-to-post experience he and his spouse had gone through.

Remember this is a case of a person living with HIV following for ART.

 

Perspectives can be very many, but the absolute nature of confidentiality and

consent should not be given up on account of convenience of government

authorities to follow up on defaulters.

 

On the other hand it will be vital to probe why the default happens in the first

place. There could be several reasons for this. One could be that there is no

treatment knowledge imparted to the PLHIV.

Or treatment preparedness has not be given adequate attention. But most

importantly the apathy displaed by counselors and medical officers cannot be run

down. If these aspects are addressed, people would automaticaly understand the

importance of adherence there would be no need for follow-up.

 

It is insensitive to say the government should insist on documents for its

conveneince without looking at the right of the PLHIV to decide who should visit

his house and whether he is willing to disclose openly before others or not. Let

us not compromise rights for conveneince.

 

I surely wish the HIV/AIDS Bill could become a legislation asap.

In solidarity

Sreeram

Sreeram Varadadesikan

e-mail: <setlurs01@...> 

[Guest guest]

Dear Forum,

Re: /message/10027

I am also personally worried about the fact that many PLHIV especially

from marginalized groups - IDUs, MSMs, and FSW are not accessing ART

in spite of very high HIV prevalence among them when compare to

mainstream population.

A recent qualitative study done by INP+, community based organization (source:

Policy brief: Barriers to free antiretroviral treatment access for marginalized

groups in India: policy and programmatic implications to ensure equity – Check

this link for complete reports - http://www.inpplus.net/downloads.html) would

reveal a variety of issues at different levels (personal, programmatic, system,

and structural) faced by marginalized groups in accessing ART.

I would like to covey my sincere thanks to the researcher for documenting these

evidences/ ground realities as this would help to advocate for the urgent need

of community: right to

health/ treatment.

The study also acknowledges that systemic need for address proof/

identity proof sometimes become barrier to access ART and negative

attitude of some health providers acts as a deterrent from accessing

ART.

In regard to Ms. Magdalene‘s reply, I do accept that counselor

has got a prominent role to play in HIV responses and their attitude

matters a lot than professional MSW qualification.

As a possible solution for this issue as suggested in the study, skilled and

trained peers can be appointed ART counsellor at least in selected centers to

ensure ART access by all those who need – a vision of NACP III.

Thanks,

D. Dinesh Kumar,

Community Consultant,

Erode.

e-mail: <ethics.justice@...>

[Guest guest]

Dear FORUM,

/message/10027

I also faced the the same situation like Kumar recently at the time of

registering myself for 2nd line ART at STM, Kolkata.

I really surprised with the funny nonsense system to meet up the formality to

retest as HIV+ through ICTC as I lost my 1st VCTC record.

Although, my 2nd line ART started in 2005 in the OPD if the same hospital

officially.

Still, I have to test again like to die to prove " I was living " !

Please don't blame any Network, let them be Healthy coordinator of the system to

Advocate to ensure self " Right  to Joyful Livelihood " not the interest of

Nation.

Thanking you,

In solidarity,

Snehansu Bhaduri

snehansu.bhaduri@...

[Guest guest]

Dear Friends,

/message/10027

A number of such instances can be quoted from various centers (i also

did some in previous years) but that is not the solution.

We have to collectively think about the problem and the solution.I am of the

opinion that we should not allow HIV go M.Leprae way I mean we do not need to

push PLHA to some sort of leprosy colonies we created for Hansen Disease

sufferers.

This can be done only by making sure that the stigma attched disappears fast and

that is only possible thru continuous education of all.

The begining should be from the care providers--their selection should not be on

criterias of degrees-it should be on their approach to life and human beings--we

need care providers with passion.

One can not be a counselor just by having few days/weeks/months

training,first it has to come from within.

We need many Gandhi's today who can do the dressings of the ill.

Dr.Rakesh Bharti,

Amritsar

--

Rakesh Bharti

MD,AAHIVS,

BDC Research center,

27-D,Sant Avenue,The Mall,Amritsar.

Punjab,INDIA143001.

TEl-91-183-2277822;91-183-2278522

e-maiil: <rakesh.bharti1@...>

[Guest guest]

Dear all,

/message/10027

I empathize with Mr. Kumar. The request for address proof is reflective of the

government system, where the service providers protect themselves with loads of

paper that the client has to run around to get.

The counselors and doctors fail to remember that it is our taxes that pays for

their salary.

regards

Sasi

Sasi Kumar

e-mail: <sasiontheweb@...>

[Guest guest]

Dear Mr Kumar

Re: /message/10027

I am sorry for the inconvenience caused to you in getting ART from Gandhi

Hospital. I am on travel to Orissa presently and have asked for report from

Gandhi Hospital. I will get back to you and forum soon with the reply

Thanks

Dr B.B.Rewari MD,FICP,FIACM,FIMSA,FGSI

Sr.Physician,Dr RML Hospital &

National Programme Officer (ART)

National AIDS Control Organistion,

6th Floor, Chandralok Building,

36, Janpath, New Delhi-110001

Tel; 011-23731954, 43509999(O)

Mobile ; 91-9811267610

Fax : 011-23731954,23731746

e-mail: <drbbrewari@...>

[Guest guest]

Dear Forum,

/message/10027

As a doctor working in the field of HIV for many years I can understand the

trouble Mr Kumar underwent .

We really need to have discussion on these issues with out disturbing the fast

pace of ART roll out .

Let me bring few points to the attention of the forum which probably may be of

some use:

ART program of the country is still evolving and guidelines are still being

evolved: we should have both PLHA and service provider friendly

program..Operational guidelines should have  be evidence based too.

1)Is a VCCTC result necessary for starting ART? I dont have any doubt in this

regard :because even in my small clinical experience I had atleast 2-3

individuals turned out to be negative on repeat testing from VCCTC.

There are many people who believe they have disease ( AIDS phobia), there are

many children still carrying HIV positive results and label just because of a

test done at wrong time. As we have to standardize the test VCCTC result is the

only practical option.

But this particular center should have had a better linkage with VCCTC and

should have known that the VCCTC is non functional those days and should not

have directed him to VCCTC on those days If Mr Kumar were a patient taking ART

from any NACO ART centres transfer could have been easier --(not always...)

2) Is identity proof and address proof  essential ? yes and no

It may not be feasible and practical to insist on these always in Indian

scenario. (as far as I know Thailand program, and all developing countries

insist on some kind of identity proof for health care).

But we have lot of migrants and otherwise who does not have social identity,

address proof etc. There are situations where geting a certificate is not easy

due to stigma nd other reasons.

Can we deny care for marginalized individuals  because they are marginalised? is

it a good idea to reduce the LFU(lost to follow up) by making the entry more

cumbersome.

My personal policy is to encourage the patient to bring his details,( almost all

of them bring it by the third pre ART counselling) identify a treatment

guardian,make sure patient is adequately counselled ( not just informed),

support him to be adherent all along.This strategy works with us and have very

few LFUs and non adherent with us.

I hope NACO also will insist on denying ART for those who not

having residence proof if they are otherwise elegible.

3) Can adherence be ensured by only individual conviction and information? I am

sorry: if that were the case atleast doctors could have been able to  take their

short course of antibiotics regularly on time.

Adherence need to be supported life long, and issues of bad or good adherence

varies from individuals to individuals. Only solution for non adherence is good

support system which include good health care team-patient relationship.

4) Also I recently heard  at least one instance a patient receiving medicines

regularly from 2 ART centers simultaneously and sharing with another patient.

How are we going to address such issues in program?

5) How can we have a " shaped & committed " ART team? It is really a big challenge

we are g facing. Please remember it is not easy to get medical officers for ART

centers, attrition rate is very high!

The new generation ART workers-esp counsellors-- does not time or chance to get

emotionally attached to the issue, The data they are supposed to collect compile

is phenomenal.

We are catering very large number of patients in our ARTcenetrs. We are trying

to provide some kind of ideal care for HIV---rememebr wat happensin the general

OP next door--with limited experaice and resourses . Let us do it together

....and relpicate to rest of the areas of heath care.

6) There is a recomendation in operational guidelines to admit PLHAS in

Community care centres(CCC) for 5 days do adherance counselling and address

varification etc. When PLHAS are lost follow up CCCs are supposed to trace them

back to ART.

regards

Dr Ajithkumar.K

Trichur

--

Dr Ajithkumar.K

Asst Professor In Dermatology and Veneriology

Medical college Chest Hospital

MG Kav,Trichur, Kerala ,India

Ph 04872333322 (res)

9447226012

e-mail: <ajisudha@...>

[Guest guest]

Dear Sh. Nagarajan Kumar,

 

Re: /message/10027

This is in reference to my earlier mail on this issue.

An enquiry has been conducted into the whole episode. Looking at the whole

episode and the enquiry report, it appears that incident has been blown out of

proportion.

As per ART guidelines, all ART centre are required to follow a defined protocol

to ensure uniformity in care. The address proof is a mandatory requirement and

was introduced when we were faced with situation of large number of LFUs who

could not be traced due to lack of a verifiable address.

The INP has always supported this address proof & now it is a part of NACO

guidelines. However we do not hold up registration on first visit if there is no

address proof. The PLHA is registered and asked to bring address proof on next

visit.

 

An ICTC report is a must because in a vast country like ours, many private labs

cannot be relied on quality (they use one test only) of testing, and a +ve

report is a major issue for a person. Hence, all our ART centres get a repeat

HIV test done from an ICTC in case a person has a positive report from a private

laboratory.

When ART counselor explained you about the process of registration and asked for

address proof, you replied in a derogatory way " Do I have to carry the ICTC

report around my neck all the time " .

Following this without losing patience, the counselor suggested you to get

yourself tested from the nearby ICTC (existing in the same building) for the

sake of Pre-ART registration.

 

We never advocate giving ARV drugs to relative /spouse of patients as every

visit to get medicine is an opportunity for enforcing adherence, side effects

monitoring and counseling.

As per guidelines, for the ART registration and drug disbursement, the person

should be present in the ART centre physically and certain minimum required

parameters are asked from all the patients as per the NACO designed format.

 

Refer your observation that you can take care of your " adherence " & if you are

not returning back to centre, " what is the centre going to do? "

Mr. Kumar, you may be sensitive enough to take care of your adherence and your

health. But majority of PLHA are not that educated, have other constraints in

coming to ART centre particularly when they are sick.

We have to track these patients to prevent development of drug resistance which

will require second line drugs and also exhaust patients future treatment

options. We are working with ICTCs, NGOs and CCC in tracking LFUs through ORW.

All these guidelines are made in consultation with INP, DLN & Civil society

organizations. We do have mechanism for monitoring ART centres through a network

of Regional Coordinators, Consultants(CST), SACS & NACO officials. We have also

tried to address problem of distance by pioneering concepts of Link ART centre.

 

But I do not agree with you on the title " Access to ART: the ground realities " .

The ground realities are quite encouraging. We have now more than 2,10,000 PLHAs

on ART & 6,00,000 registered in HIV care at 197 centre.

The ground reality is that ART is available, accessible and we have many success

stories in ART roll out. Every ART centre has a PLHA as care coordinators; all

states now have Grievance Redressal Committees headed by Health Secretaries of

State. Independent Client satisfaction surveys have shows high level of

satisfaction.

All counselors undergo a 12 days training which not only cover technical aspects

but also issues related to social, psychological aspects and is sensitivities to

needs of PLHA.

I hope you are not having problems now in getting ART from Gandhi hospital,

Secundrabad.

Dr B.B.Rewari

MD,FICP,FIACM,FIMSA,FGSI

Sr.Physician,Dr RML Hospital &

National Programme Officer (ART)

National AIDS Control Organistion,

6th Floor, Chandralok Building,

36, Janpath, New Delhi-110001

Tel; 011-23731954, 43509999(O)

Mobile ; 91-9811267610

Fax : 011-23731954,23731746

e-mailL <drbbrewari@...>

[Guest guest]

Dr B.B.Rewari and all,

Re: /message/10147

Well done and I thank you and the system for having taken such a high

responsibility to look into the matters. Thank you again.

Let Mr. Kumar and the like understand that any system is only for the benefit of

the mass though it requires a little discipline and restrictions.

I also invite Mr. Kumar and others to join us to explain these background to any

one and seek support from them to make all our efforts successful.

Thanks

B Ragupathy

e-mail: <iloveindia2025@...>

[Guest guest]

Dear Forum,

Re: /message/10147

This is for the response and suggestions from the  members of the forum working

in the  various fields of HIV care regarding  a new challenge some ART centers

are facing especially in  Medium to high turn over ART clinics.

With the  new staff pattern in ART center, we have more staff--(1 counselor for

500 patients, more than 1 medical officers, community care coordinator, Nurse,

pharmacist,and other staff supporting the ART) in place in many ART centers.

Traditionally our patients are used to get care from only a doctor or at the

most a pharmacist  with no documentation, no counseling, no  research.

With more stress on adherence counseling, and documentation and better staffing

of ART centers, system started doing things more systematic than previous days

and obviously atleast some patients had to stay in the ART center for longer

time. ( eg earlier the stress was for medical care only now every patient has to

meet counselor for adherence evaluation and counseling almost every visit which

was not possible always with  one counselor).

Also over the years the number of patients receiving medicine from these ART

centers also increased. There are more than one

instances  where PLHAS who think they can be adherant with out any help are

unhappy with " wasting time " for adherance counselling  and documentation in ART

centre whch just delays they procuring medicine and meeting the doctor.

It is easy to blame the counsellor and question the quality of counselling here

but issues are much more than that. Unless we take it as and administrative and

counselling challenge this can eventually lead on to more problems .

This new situation is slowly leading to a new challenge of balancing the patient

satisfaction (quick and fast delivary of care) and ideal acceptable treatment

support.

Even though the guidelines tell us these is a possibility dispensing ART patient

not meeting the doctor if he is adherant, culturally our patients are unlikely

to accept that. Also ART medical officers may not take that risk also.

I request the forum to discuss this issue specifically and share your experience

in related areas.

I Hope NACO especially the departments of C & S and counseling will look into

these areas and do some operational research in this area and adapt the program

accordingly

Dr Ajithkumar.K

--

Dr Ajithkumar.K

Asst Professor In Dermatology and Veneriology

Medical college Chest Hospital

MG Kav,Trichur, Kerala ,India

Ph 04872333322 (res)

9447226012

e-mail: <ajisudha@...>

[Guest guest]

Dear Dr Rewari

Re: /message/10147

That was a fantastic response and it is great to notice NACO'a planning,

preparedness and approach to the care and treatment program.

In fact the numbers speak for themselves.

Can I take this opportunity to request for a centewise list of patients regd for

ART at the 197 centres?

Regards

Dr Sanjay Sarin

National Manager (Global Health)

BD India

e-mail: <ssarin_2000@...>

[Guest guest]

Dear Forum,

Re: /message/10172

Dr. Rewari's and Mr. Kumar's statements are both valid in their own way but

there are a few things that I believe need more attention

1. Quality Enhancement of ICTC services - In support of Dr. Rewari's

statements, when a policy decision is taken it is done considering a larger

population into account and so individual issues might not make much impact in

these decisions hence some stiffness in the criterion e.g., presence of ICTC

results for ART registration.

It might be an inconvenience for most people but this process decreases some

amount of discrepancy among all the results that are received by the ART center.

Imagine an ART center receiving positive results from those private labs that do

not even test the samples and make up results. So an ICTC result is definitely

the way to go but then, as suggested by Kumar, these ICTC centers have to stay

open and have adequate amount of kits.

It is a known fact in the field that many people do not visit ICTCs because they

have themselves been or have known people who have been denied a test due to

lack of kits. This is where quality enhancement of services is required.

2. Flexibility of ART registration - There is a requirement of some amount of

flexibility in the system of registration as Kumar has suggested especially for

the mobile population in our country since now we are talking about a larger

population.

Take the trucker population for example; even if they have an address proof,

will they be able to access ART from the registered centre every month?

Shouldn't there be some system in place which allows them to collect their

medications from the nearest place wherever they are located with a week's time

in hand instead of being told that they come at the end of the month with the

empty bottles in the place of registration?

Not everyone can stick to that schedule. Now, one can say that in order to

access life saving medicines they have to make such an effort but look at the

flip side of the story - they have to earn to stay alive too and not only their

lives, their family also depends on that earning and that is their immediate

requirement.

3. Flexibility of Interregional ART policies - In India, most people have

travelling jobs and they shift jobs - a majority of the working population,

especially the young population (those at higher risk of contracting HIV) is now

mobile. So, the condition and issues of access to ART is not limited to the

Truckers and Migrant workers (traditionally considered amongst the lower

economic strata) per se.

Now it is a much larger population and involves the young and working PLHA group

- does not matter which community or economic strata they belong to. So, the

need of the hour is building of policies that hold the flexibility that an ART

card, no matter from which government center, be enough to collect medications

from any center across the country although steps have to be taken to avoid

duplication of the provision of ARVs.

LFU rates should not be a hindrance in keeping the promise of ' Universal access

to treatment'. LFU rates can be dropped by better counseling and outreach

techniques and who is to say that this flexibility will not further decrease the

LFU rate? Theoretically it can because there is an increase in accessibility and

therefore a policy should be considered for the same.

Dr. Nochiketa Mohanty

Country Project Coordinator

AHF India Cares

S 345 Panchsheel Park

New Delhi 110017

Phone +91 11 46866800

Fax +91 11 46866813

Cell +91 9958262277

nochiketa.mohanty@...

www.aidshealth.org