World AIDS Day: Why Manipur is losing the battle against HIV

December 1 marks World Aids Day— a mission that commenced 15 years after the United Nations (UN) millennium goals aimed at ‘Getting to zero’, a theme that meant complete eradication of HIV. India accounts for 51% of the AIDS-related deaths in Asia and 8% worldwide.

Since discovering its first HIV case in 1986, India has the third largest living population with HIV, UN estimates say. Although the number of fresh HIV cases has declined since 2001—new HIV infections have fallen by 38%, AIDS deaths have fallen by 35% since a peak in 2005—the situation in India’s North-Eastern state of Manipur is growing dismal.

“In Manipur about 43,000 people are said to be infected with HIV. If the remaining population who stays away fearing the discrimination attached to the disease were tested, chances are that the numbers could be twice more,” claims Manipur Network of Positive People (MNP+), a two-decade network especially formed and run by the people living with HIV/AIDS in the state of Manipur

While the UN estimates talk about HIV/AIDs and their declining number, patients with HIV have been at risk of contracting Hepatitis C, a chronic liver disease caused by the Hepatitis C virus (HCV), causing inflammation and scarring of the liver and leading to death.

“When we started the network, our main focus was on Intravenous Drug Users (IDUs). But now it is the general public, sex-workers as well as children. Everyone living in Manipur is at risk of getting infected with HIV or HCV. The state government does not check if the state hospitals or health care providers are following universal preparation. So there is a high risk of people getting HIV/HCV infection from blood transfusion,” said L Deepak Singh, who is acting as president of MNP+. Formed in September 1997, MNP+ was initiated as a self-support group to provide a helping hand in times of need. Today, the organisation has become a full-fledged state-level network having over 3,000 members and offices in all districts of Manipur.

“I was an injection drug user. In July 2006, I voluntarily went to Regional Institute of Medical Science, Imphal to test my blood. Unfortunately, I tested positive for HIV. In 2007, before starting Antiretroviral Therapy (ART) I took Hepatitis B and Hepatitis C testing. Then, I found out that I am infected with Hepatitis C as well,” said Dinachandra Thongam, who is now working as an outreach member at MNP+.

Singajit, paying tribute to his brother Hemanta during a MNP+ event. Hemanta, contracted Hepatitis C (HCV) while sharing syringes. He worked as an auto-rickshaw driver to support his wife and four children. He wanted treatment for his disease but could not afford it. Image credit: Sarika Gulati/iamin

High risk of transmission

There is a high probability that an HIV-infected person could get co-infected with Hepatitis C as it is 50 times more transmissible than HIV. MNP+ has strongly denied the claim that blood banks in the state are 100% safe as they do not test for Hepatitis C. The NGO also cites instances of discrimination in healthcare institutions. For instance, people living with AIDS are not provided proper attention and care when they approach these hospitals.

Just as an HIV patient can live a long life by taking ART drugs, many new medicines for Hepatitis C have been introduced. Earlier treatment of Hepatitis C involved taking two medicines - Pegylated Interferon, a dose taken by injecting and Ribavirin taken as tablets for oral consumption. These medicines don’t come cheap. Many have stayed away from seeking treatment for HCV primarily due to the cost involved and the duration. “I have not started treatment for Hepatitis C because of a financial problem. Earlier Hepatitis C treatment cost around Rs 6-7 lakh and it lasted a year. With the introduction of a new medicine called Sofosbuvir, the cost of treatment has come down to around Rs one lakh 50 thousand, but we still can’t afford the treatment,” Thongam said.

Similar is the case with Ratan Khundrakpam from Uripok who said, “I didn’t have money to go for treatment,” he said adding, “Now, if you are a BPL or Antayodaya (AAY) card holder, you can get reimbursement of up to Rs 1.5 lakh under Manipur State Illness Assistance Fund. With this scheme, one can initially take a loan and pay back after getting the reimbursement. MNP+ is going to help me get the reimbursement, so I have decided to go for it in May 2016.”

No easy access

The supply of certain medicines for HIV/AIDS has been disrupted. In 2007-08, medicines for prevention and treatment of Opportunistic Infections (OIs) were provided in large quantity through NGOS and hospitals. But in recent times, the supply has been curbed and the patients have been compelled to buy medicines like antibiotics and anti-itching cream themselves.

Vulnerable spouses

In Manipur, the maximum number of the HIV-positive women got the disease from their husbands. But these innocent women are the most vulnerable victims of social stigmatisation and discrimination, with people even raising questions on their characters.

Binata (name changed), is one such a widow with two children. “When his family members came to know about his illness, they rejected us. They started treating us like untouchables. Nobody would eat anything from our house. My brother-in-law would not allow his kids to enter our house. They raised questions on my character.” While Binata stopped short of committing suicide and killing her children, many had no choice but to take their lives and the lives of their children fearing the social ostracism.

Today, the treatment for Hepatitis C has become easier with the coming of Sofosbuvir early this year. With Sofosbuvir and Ribavirin taken together, the duration of the treatment is six months, whereas the treatment can even be completed in three months with the combination of three medicines Pegylated Interferon, Sofosbuvir and Ribavirin.

Being an organisation working on this issue, MNP+ played a big role from the North East India by raising voices by organising rallies demanding from the government to provide free treatment for Hepatitis C or subsidise the medicines since 2006-07. Sofosbuvir is yet to be included in the list of medicines under the BPL and AAY card holder reimbursement scheme. “We are pressurizing the government to include it in the list,” said Thongam.

Their relentless efforts have led to patents being removed from certain vital medicines, leading to a reduction in steep prices and affordable treatments. Yet, poverty has kept many away from healthcare for HIV/HCV. Sadly, only 3 out of 100 HIV/HCV patients in Manipur are able to afford the treatment.

Eradication of the HIV/HVC needs the inclusion of social solutions along with affordable and timely access to treatment. Focus needs to be on social support, greater sensitisation on proper treatment/infection and no discrimination for families. Programmes should focus on the youth, bringing them back to mainstream society and addressing their livelihood needs.

The cost of treatment has significantly come down after March 2015, but Deepak still feels that regular healthcare system (both Hospitals and doctors) need a greater sensitisation and must take the lead in the fight against HIV/HCV.

This article was first published on iamin.in. For more such hyperlocal stories, visit their website.