Rights group and positive networks press
for easy access to second-line ART
Source: Hueiyen News Service
Imphal, July 14 2012:
"We should do away with systems that impede access to treatment.
Patients should not suffer waiting for doctors to convene at their convenience and take decision on treatment.
SACEP instead of delivering speedy second-line treatment has delayed it thereby endangering lives", L.Deepak, President, Manipur Network of Positive People (MNP+), said while speaking at a consultative meeting on improve access to alternative first-line and second-line ART for people living with HIV and AIDS.
The State AIDS Clinical Expert Panel, popularly known as SACEP, was instituted in November 2008 to provide first-line alternative and second-line ART.
Presently SACEP in Manipur comprises eight clinical experts including Deputy Director (Care, Support & Treatment), MACS.
Deepak informed that NGOs and positive networks in Manipur and other states have come across a number of cases in which treatment is delayed due to SACEP.
Delay in treatment, red tape and other difficulties faced by patients are reasons why positive networks all over the country have demanded review of SACEP or scrap it altogether.
Speaking at the inaugural session of the consultative meeting, Dr.Sailesh Kumar Chourasia, Project Director, Manipur State AIDS Control Society (MACS), said that the role of SACEP is critical in the state HIV and AIDS programme.
However, treatment strategies and systems must be in tune with needs of patients.
"Sometimes we fail to identify gaps between need (of patients) and systems meant to address these needs.
Such consultations will ensure that gaps are plugged.
MACS will do whatever it can to improve service delivery", he noted.
On difficulties faced by patients in getting their viral load test being done in Kolkata, Chourasia assured that MACS will look into the possibility of engaging a private clinical laboratory in the state for the same.
Presently Babina Diagnostics Centre is the only laboratory in the state which has facility for viral load testing, a clinical investigation necessary for most patients requiring initiation of second-line ART.
Representing Human rights Alert (HRA), Basantakumar Wareppa said that it is only police and armed forces who are often looked at as human rights violators.
"Doctors or any government employee who fail to deliver services that he is mandated to provide also amounts to rights violation.
People living with HIV should speak up for their rights to ensure appropriate systems are activated and services are delivered in time", he exhorted.
Informing that in recent past Manipur Network of Positive People (MNP+) came across cases of PLHIV who died while awaiting SACEP to take decision on their treatment, Ratan of MNP+ said, "We as responsible human beings must not allow this to happen in future" .
Sharing her experiences during the consultation Sushila (name changes) urged MACS to take immediate steps to ease access to second-line ART.
Sushila's husband and son died in 2010 and 2012 respectively, waiting for SACEP board members to convene and take a decision.
Patients who fail to respond to or cannot benefit from first-line ART are recommended for first-line alternative treatment or second-line ART.
Presently 88 persons are under first-line alternative treatment while 87 are on second-line ART.
RIMS cater to patients requiring first-line alternative treatment or second-line ART from all NE states except Assam and Sikkim.
The consultation, which was moderated by rights activist and lawyer Khaidem Mani, came up with a ten-point recommendation which will be submitted to the Minister, Health & Family Welfare, RIMS, MACS, JNIMS.
The recommendations include review of the existing SACEP) and its membership and expand SACEP to include nodal officer of Regional Paediatric Centre (RPC) and ART, JNIMS; to include two PLHIVs (one male and one female)in SACEP as members or special invitees for more transparency and accountability; installation of a viral load machine at the earliest at the Centre of Excellence (COE), RIMS, Imphal; to explore all the possible scope to recall retired experienced doctors in state HIV programmes and involve them in SACEP; to activate grievance redressal cell in accordance with Supreme Court directive No.5/2008 at the earliest and inclusion of at least one PLHIV in the cell; holding of SACEP meeting once every week instead of the present 2 times a month to reduce delay in providing second-line ART; to explore possibility of Public Private Partnership (PPP) with existing health and clinical labs to provide access to viral load testing instead of sending it to other state; to provide clinical tests at RIMS and district hospitals free of cost for PLHIV who are on ART to avoid financial burden as most of the PLHIV are unable to afford it; to identify two or more accredited clinical test centers in the state to avoid the repetitions of all clinical testing which is required for second-line ART.
The consultative meeting was jointly organised by the All Manipur Anti Drug Association (AMADA), Community Network for Empowerment (CoNE), Centre for Organisation Research and Education ( CORE), Human Rights Alert (HRA), Human Rights Law Network (HRLN), All Manipur Bar Association (AMBA), Kuki Women Union, Kripa Society, Care Foundation, Lifeline Foundation, Dedicated People's Union (DPU), Manipur Cycle Club (MCC), Coalition Against Drug and Alcohol (CADA), Christian Network of Positive Women of Manipur (CNPWM), All Manipur Nupi Manbi Association (AMANA), Solidarity and Action Against HIV infection in India (SAATHII), Manipur Network of Positive People (MNP+), Social Awareness Service Organisation (SASO), Population Foundation of India (PFI), FXB Manipur, Centre for Advocacy and Research (CFAR) .
It may be recalled here that on December 1, 2008, Manipur became the fifth state in the country to roll out free second-line ART at RIMS, Imphal.
In trying to avoid difficulties in accessing second-line ART from RIMS, if a person opts to buy it on his own then he/she has to spend anywhere between 4,000 and 8,000 rupees every month.
Experts claim that around three to four percent of patients on ART develop resistance to first-line every year.
As on October 2010, Manipur has 36,854 people infected with HIV and 6,833 people are on ART.