Access to HIV/AIDS Care - Executive Summary

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Access to HIV/AIDS Care: A Study among People Living with HIV/AIDS

A study conducted by: The Maharashtra Association of Anthropological Sciences

Centre for Health Research and Development, Pune (MAAS-CHRD)

Supported by: Resource Centre for Sexual Health and HIV/AIDS (RCSHA), New Delhi

& The Department for International Development (DFID), UK

EXECUTIVE SUMMARY

The importance of strengthening care and support for India's 5.2

million people living with HIV/AIDS (PLHA) is increasingly being

recognised, and institutional strengthening and capacity building

have been adopted as key objectives of the National AIDS Control

Programme (NACP). Nationwide hospitals, community care centres and

families providing home-based care are working synergistically to

provide care and support to PLHA. In order to respond to the full

range of care and support needs of PLHA at different stages of the

illness, it is necessary to know more about the existing experiences

of PLHA in accessing HIV/AIDS services.

In this research study, a survey and in-depth interviews were

conducted with PLHA accessing a range of health care facilities

(public, NGOs, private) in three different states (Andhra Pradesh,

Maharashtra and Orissa). This report documents barriers and enabling

factors in accessing healthcare and identifies needs from the

perspective of PLHA. It also provides insight and information into

health services' responsiveness, and sheds light on broader socio-

cultural factors at play.

The results of the study can help in improving existing programmes,

identifying new focus areas and developing novel approaches for

improving access to care. It will also help in the development of

measurable indicators for access to services for PLHA.

Key Findings

What is the profile of PLHA who seek care and support from various

kinds of providers in the study sites?

· The majority of PLHA are young, belonging to the productive age

groups in the population (18-45 years), rural residents

(75%),with between one and ten years of education.

· In all the three study sites the PLHA are poor (median per capita

income of Rs. 900), with more than half having no stable income, a

third (35%) engaged in unskilled labour, living in families where

the earner to dependent ratio is 1:3.

· The large proportion of widows (40%) among the PLHA interviewed

and the presence of another HIV infected person in the families of

61% of PLHA shows the extent of the epidemic in the study sites.

Where do PLHA get tested for HIV? How do they access various HIV

testing facilities? What are their experiences while utilizing HIV

testing facilities?

· Relatively more public facilities (56%) are accessed by PLHA for

getting tested for HIV for the first time as compared to private

sector facilities (44%).

· NGO social workers and private doctors play a key role in

referring PLHA for HIV testing.

· While the public sector generally follows national policy

guidelines of obtaining consent for testing and pre and post-test

counselling, the private sector largely flouts guidelines. Consent

is not obtained from two-thirds of PLHA, and pre- and post-test

counselling is not offered to 61% and 64% of PLHA, who are seeking

help from private sector facilities.

· Key barriers to accessing HIV testing include: direct and in-

direct costs for HIV testing irrespective of sectors, the negative

attitude of staff in the private sector and inconvenient location

of facilities in the public sector.

· Most commonly expressed needs and expectations of PLHA around HIV

testing include better behavioural and psychological support from

the medical fraternity across private and public sectors.

Where do PLHA seek help for HIV-related illnesses? How do they

access various facilities for HIV-related Illnesses? What are their

experiences while utilizing facilities for HIV-related Illnesses?

· The private sector is a key provider for the treatment of both

major and minor illnesses for 70% of PLHA.

· PLHA who seek care in the public sector face several problems, key

among them being non-availability of medicines, staff and

diagnostic facilities apart from inconvenient location.

· Across public and private sectors, the costs on medicines and

investigations that are incurred by PLHA for availing treatment

for HIV-related illnesses, along with the negative attitude of

providers act as major barriers in receiving continued and quality

health care services.

· Expressed needs of PLHA with regards to treatment of HIV-related

illnesses include the availability of patient-friendly and

affordable services for HIV-related illnesses located close to

their homes.

Where do PLHA access ARVs? How do they access various facilities for

ARVs? What are their experiences while utilizing facilities

providing ARVs?

· The public sector is a key provider of ART for 88% of the 84 PLHA

on ART.

· Half of the 20 PLHA who initiate ARVs in the private sector,

subsequently shift to the public sector ARV rollout because of the

high cost of treatment.

· NGO workers (27%), referring doctors (20%) and Positive People

Networks (10%) are the main enablers facilitating access of PLHA

to ARV treatment in either the public or the private health care

facilities.

· The cost incurred on receiving ART in the private sector is an

important barrier in sustaining treatment and ensuring adherence

to ART.

· Non availability of functioning CD4 count testing facility, the

high costs of the test in the public sector and the negative

attitude of doctors and other staff members are major barriers to

accessing ART under the rollout.

· Infra-structural problems like insufficient space result in long

waiting hours and queues at the ARV rollout centres.

· Key needs expressed by PLHA with regard to ART are continued

availability of drugs and affordable and functional CD4 count

testing facility, decentralisation of ART to the level of rural

hospitals and taluka level health centres, and nutritional

supplements in conjunction with provision of ARVs.

What non-medical needs do PLHA have and who addresses these needs?

1. PLHA have a wide range of non medical needs that range from

financial to psychosocial and nutritional needs.

2. Close family members and relatives provide much of the psycho-

social as well as financial support needed by PLHA.

3. PLHA also receive support from a range of people outside the

family, including NGOs, friends, neighbours and private doctors.

4. The range of services provided by NGOS to support PLHA was

enormous – from financial, psychological, nutritional, social,

legal and medical.

5. Close to a third of the PLHA (32%) report having unpleasant

experiences with their family members and relatives as a

consequence of their HIV positive status. More women (19%)

compared to men (13%) reported facing problems, mostly

discriminatory attitude and behaviour, from their family members

Programmatic Recommendations

1. Care, support and treatment-related needs of PLHA

· PLHA in all the three settings seek help from the public, private

and NGO sectors for their varied care, support and treatment

needs.

· PLHA are burdened with costs, debts, and face stigma and

discrimination.

· The burden of high costs is, in large part, due to the regular

episodes of HIV-related illnesses, for which PLHA do not have

access to free treatment.

2. Infrastructural, Non-Availability and Supply related issues in

public sector settings

· There are several problems in the public sector delivery of HIV

care services; these include:

o Non-availability of testing kits

o Non-availability of CD4 testing facilities

o Non-availability of essential medicines for OI treatment

o Lack of patient friendly services in the public sector including

issues like

§ Staff availability

§ Staff attitudes

§ Space

§ Counselling environments

§ Waiting time

§ Complicated procedures

3. Framework of comprehensive HIV/AIDS care for planning needs of

PLHA

· PLHA have varied care, support and treatment needs at different

stages of the illness.

· While planning for all these needs, the wider framework of

Comprehensive HIV/AIDS Care, as advocated by the UNAIDS, needs to

be taken into account.

4. Integration, decentralization and rapid scale-up of ART Programme

in India

· There are large groups of PLHA with unmet needs and huge

expectations regarding ARV treatment across the three sites,

indicating the need for decentralization and scale-up of the ART

programme in India.

· The present ARV rollout sites are struggling with infrastructural

issues with respect to adequate space, counselling environments

and staffs. Innovative ways need to be used to address these

matters.

· The management of OI is an unmet need even in the case of

patients on ARVs. Attempts need to be made to ensure that OI

management becomes an integral part of ARV treatment.

· The private sector is a key provider for all phases of being an

HIV patient, from initial testing through to being put on ART,

apart from playing a facilitating role, along with NGOs, in

accessing appropriate treatment.

· Across ARV roll-out sites, PLHA have high expectations from the

ARV rollout programmes, that go beyond the provision of treatment

and extend to financial and nutritional support.

o NGO partners can be addressed to play this role after assessing

their capacities and competence to do so.

5. Sensitization of private medical providers (PMP) regarding rights

and needs of PLHA

· Although they play a significant role in HIV testing, OI

Management and ARV treatment, PMPs do not follow mandatory

procedures, particularly with regard to consent and counselling

before and after HIV testing and before and after starting ARVs.

6. Public-Private Partnerships to ensure continuity of care

· PLHA in the study incur both direct and indirect costs while

seeking treatment for HIV testing, opportunistic infections and

ARV treatment. This additional burden has been identified as one

of the barriers to accessing continued and quality HIV care.

7. Shift in awareness programmes under the NACP

· PLHA have reported the need for access to timely and need-based

information about the disease and about the facilities available

in the public sector.

Research Recommendations:

Developing Indicators of Access

In a diverse setting like India where " access " assumes context-

specific meanings, there is a need to identify appropriate composite

quantitative and qualitative indicators that take into consideration

factors such as the presence of different kinds of providers who

cater to the PLHA population, the quality of care delivered by them,

the burden of disease and the burden of accessing care of varying

quality from these different providers. Different kinds of studies

might generate data to help develop these indicators, e.g.:

o Studies that delve into help seeking and enablers and barriers to

accessing care in different contexts

o Periodically undertaken situation analysis studies using

qualitative methods

o Studies on disease burden and coping mechanisms at the individual,

family and community level.

Regards,

Saju ph,

Research Supervisor,

MAAS-CHRD,

Pune, Maharashtra,

India.

E-mail: <saju_333@...>

For Any Query:Contact At

MAAS-CHRD

64, Anand Park

Aundh,

Pune - 411007

Maharashtra, India.

Ph: +91-20-25884150 (Office), 09890906562 (Mobile)