[procaare] HCC:Post Conference discussion -18

[Insight Initiative Team <insight@hdnet.org>]

HCC: Post Conference discussion - 18
- HDN Key Correspondents/Rapporteur Team,Thailand
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The Fifth International Conference on HCC for PLHA: Summary of proceedings presented at
Final Rapporteur Session

Track A: Care, Treatment and support in the Community

Track Chair: David Wilson (MSF)

"AIDS can be treated"
* HIV is manageable as a chronic disease (Dr Jai Narain: WHO regional advisor on HIV/AIDS
and TB).
* HCC helps us listen, care and support. This facilitates trust and healing in
relationships and allows people to gain control of their own lives (pre-conference e-mail
discussion).
* Obstacles are stigma and discrimination.
* Care, treatment, support and prevention should be integrated.

The reality of AIDS
(Mr Prasert Dechaboon: PLHA rep)
* Chronic ill health and stigmatization threaten humanity and dignity.
* AIDS has lead to friendships and a determination to preserve humanity and dignity: 'The
Power of Humanity'
* To improve our health we need medicines. The medicines are often too expensive because
of monopolies on the drugs (by companies in low-prevalence, richer countries).
* The fight to preserve humanity and dignity includes a fight for cheaper drugs. This
fight is being fought especially in Brazil, South Africa, India and Thailand.

What barriers are there to access to quality care and support?  (1)
* We need a comprehensive needs assessment before starting an intervention.
* Sex workers in Kenya needed micro-credit, not only STD/HIV/AIDS education and
counseling. PLHA in Kwa-Zulu Natal need food more than they need an infectious diseases
clinic.
* Community-based research is necessary to assess the palliative and supportive care needs
of clients (Canada).
* We need to integrate counseling with home care, even in a context of poverty and lack of
privacy. If home visits are merely social or purely medical, we will not relieve suffering
(Tanzania). Therefore basic counseling skills of home care staff need to be developed.

What barriers are there to access to quality care and support?  (2)
* The debate on Quality of Life needs to get real. "Do you have enough to eat?"  "Can you
clothe your children?"
* A study in N Thailand showed us that PMTCT programmes can be too narrowly focused. We
must think about the needs of mothers for medical care when they become ill, or on the
socio-economic needs of the family.
* The long-standing issue of integrating TB control programs with HIV care and treatment
remains. The discussion has a new dimension now that access to ARV is becoming more of a
possibility. (Zambia) We need to know whether the many successful examples of DOTS can
also apply to monitoring of ARV.

Improving Access and Quality  (1)
* The debate has moved on.
* Management of OI is regarded as a priority. (Thailand)
* Prevention of OI really helps - not only co-trimoxazole, but fluconazole, which is
potentially very useful in areas with endemic cryptococcal meningitis. Fluconazole is
generic (= cheap) in some contexts.
* But Milly Katana from Uganda noted the failure of Pfizer to distribute free fluconazole
as promised.
* If simple medicines (widely available in pharmacies) are to help, pharmacists and PLHA
need information.
* There is still uncertainty about INH prophylaxis amongst both presenters and
participants. This needs to be resolved with clear information.

Improving Access and Quality  (2)
* The debate has moved on.
* ARV will become more available in many settings.
* Technical questions are being asked and answered:
What regimens are appropriate for resource-poor settings?
How can we monitor? Cheaper CD4 monitoring.
* ARV are cheaper because of greater involvement of PLHA (among other factors). Now PLHA
in some resource-poor settings begin to have the opportunity to take ARV and also to
develop their role in helping each other take these complicated medicines.
* Hospitals have the chance to do something better and to improve their skills. Respect
for hospitals can also increase.

We still need HCC
* ARV programmes are unlike other programmes (such as TB). If there is not enough
treatment for everybody, it can cause conflict.
* If treatment is to help prevention, enrollment must be fair and people must not be
excluded on grounds of high risk behaviour. If so an important chance to reduce new
infections will be missed
* ARV have not addressed the stigma issue.
* We need HCC for PLHA that cannot access ARV or for whom it fails. HCC is still the best
means of palliative care and symptom control.
* We need HCC for PLHA taking ARV to ensure adherence.
* OI, ARV and palliation are all equally important

HCC: is it the key to reducing costs? (1)
* Home care necessary to limit burden on hospitals.
* In KwaZulu-Natal (for example) impoverished people prefer to stay at home rather than go
into hospital.
* Small-scale projects, with a 'lessons-learned' goal may rely on professional caregivers
and be expensive.
* Large-scale effective projects rely on unpaid volunteers, including doctors, nurses,
social workers and non-professional community members.
* Presenters had difficulty defining what cost-effectiveness was. For policy-makers this
might be frustrating.

HCC: is it the key to reducing costs? (2) What about sustainability?
* In a slum community of 100,000 people (25% PLHA) in Nairobi, basic needs such as clean
water not met. Mothers get free NVP. HCC helps these people afford water. We need these
kinds of projects even if we cannot describe their cost-effectiveness.
* How can we sustain volunteers?
In the Nairobi programme, when clients received food and clothes, the volunteers also
received some.
Church-based programmes can be more successful.

How to achieve successful partnerships
* Facilitate dialogue between different agencies to break down the territorial nature of
many professions.
* Greater Involvement of PLHA is a cross-cutting issue but is necessary for successful
partnerships.
* There is often mistrust between PLHA and governments.
* There are often misunderstandings between government, PLHA, civil society and NGOs.
Partnership building needs to be based on building trust.
* Discussion is necessary to identify different roles and to be sure that the programme
acknowledges the worth of all the partners. (Brazil)

How to achieve successful partnerships: some examples
* Volunteers need careful selection and training and professional accountability
(KwaZulu-Natal). Volunteers may include both lay people and professionals.
* 'Volunteer' is not the same as 'amateur'. In Malawi, there is a system for case-referral
from a hospital-based counselling and testing centre to the community.
* Linking volunteers with professionals requires supervision by peer leaders, community
nurse and doctor. Volunteers are able to provide basic medical treatments as well as
vocational training, income generation. This both reduces hospital congestion and improves
Quality of Life.

HDN Key Correspondent Team
Rapporteur Team
E-mail: correspondents@hdnet.org

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The Insight Initiative Project is managed by Health & Development Networks (HDN) in
collaboration with the Thailand Red Cross Society, the World Health Organization and the
Royal Thailand Government, with financial support from AusAid and UNAIDS.

For more information about this project (the 'Insight Initiative'), visit the HDN website
at: http://www.hdnet.org

Fifth International Conference on Home and Community Care for Persons Living with HIV/AIDS
Chiang Mai, Thailand - 17-20 December 2001
Website: http://www.hiv2001.com


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