Positive people meet parliamentarians

Women from Orissa and Tamil Nadu who were thrown out of their homes when their husbands died of AIDS, were part of a group of HIV-positive people who met to share their concerns with parliamentarians in Delhi during Global AIDS Week.

They left with a commitment from MPs that AIDS activists would have an opportunity to interact with the Prime Minister and health minister during the coming session of Parliament.

In a week that kicked off with candlelight memorials and human chains around the country (Patna pictured above), the meeting organised by ActionAid allowed parliamentarians to hear first-hand the impact of lack of testing facilities, trained staff and access to treatment.

‘At least in jail there would be regular food’

In Orissa where Namita Nanda lives, there is just one testing centre in the entire state. Lack of basic nutrition and medical facilities exposes women in particular to highly vulnerable situations including physical and sexual exploitation she told the MPs who had gathered in Delhi .

“The situation is so bad that some say that will try to commit crime in order to get into jail. They hope that at least in jail they will get regular food and some reprieve from the harsh society they are facing outside.”

Make pro-poor schemes available

At another AIDS Week event in Bangalore , ActionAid director Babu Mathew highlighted an immediate step that could be taken: “HIV-positive people should be considered as poor and all the schemes that are there for the poorest of poor should be provided to them.”

Elizabeth from the South Indian Network of Positive People echoed this point in Delhi : “HIV-positive people need social security and jobs. If we have an income we can take care of ourselves and our families.”

“We also need homes and shelters for women and children affected by HIV/AIDS,” said Elizabeth .

Elizabeth and her two children were thrown out by her in-laws when her husband died of AIDS illnesses in 2003. With the support of an ActionAid fellowship she has since emerged as a community leader in tackling the epidemic.

Dangerous myths

“The situation for transgender people is even worse,” warned Elizabeth . Existing discrimination on the basis of sexuality is compounded by the ignorance and fear that surrounds AIDS.

Meena Dayal from the Haryana Network of Positive People said that awareness levels are also abysmally low where she lives that dangerous myths and discriminatory practices are flourishing.

Access to treatment

Mike Tonsing, coordinator of the Delhi Network raised concerns that less than 10% of Indian’s who need antiretroviral treatment have access to the life-saving drugs, despite the country being a major producer of generic medicines for export.

“Interruption of ARV drug supply to patients is frequent and often lasts as long as 15-40 days.  Due to this interruption positive people develop resistance to the drugs,” he said.

Hameed of Maharashtra joined Tonsing’s calls for ‘second-line’ treatments to be made available to patients under government health programmes and for urgent investment in more and better trained medical staff.

“Doctors regularly shun patients who are HIV-positive. There are cases where staff refuse to operate because they are afraid of becoming infected or ‘spoiling their instruments’,” said Hameed.

Dayanand Sharma, part of ActionAid’s fellowship programme for HIV-positive community leaders told how he lost the sight in one eye after doctors kept cancelling his operation.

“If doctors behave like this, how can we expect anything better from common people who receive misleading information from different quarters?”

‘You can help us live’

Celina D’Costa, Advocacy Officer for the Indian Network of People Living with HIV/AIDS said she now needs to start medication but is scared to, knowing the state of drug supply in our country.

D’Costa told parliamentarians, “I’m sharing my situation with you and asking you to do something about it. You can help us live.”

Members of Parlaiment for Manipur, Arunachal Pradesh and Bihar as well as minister Oscar Feranandez and Rajya Sabha member JD Seelam all expressed their willingness to extend support.

“More needs to be done to strengthen the primary health care system, particularly in states such as Bihar and Uttar Pradesh,” said Seelam.

Fernandez underlined the need to “explore ways to make sure that medicines are made available by the health ministry through the state governments at the door-step of the patients, instead of patients struggling to get them.”

Keep your promises

A new report from ActionAid calling on governments to urgently deliver on their pledge to achieve universal access to HIV prevention, treatment and care by 2010 was also launched. Positive people and parliamentarians pledged to make sure this promise is not forgotten.

Photos credit: David Orr/ActionAid