ARV Progress in India

Interview With Khousalya Periaswamy

What is the situation for access to antiretroviral (ARV) drugs in India now?

In April, the government started giving free ARV drugs in six high prevalence states in India, but only a few people are getting them so far. They are focusing on high prevalence states, but we need access everywhere. A few people are getting treatment, but they still don't have monitoring or education and the government workers are still not comfortable working with people with HIV.

The organization, INP+ (Indian Network of People Living With HIV/AIDS) is working nationally and within that we have an organization for working with women and children, which is called Positive Women's Network (PWN+), which I am in charge of. So INP+ and PWN+ are working closely together.

Indian generic drug companies are manufacturing low-cost ARV drugs for sale in Africa, but they are more expensive in India.

Yes, we are selling the drugs for $150 per year in African countries, but for $50 a month in our country. We have submitted a treatment proposal to the Global Fund, so if we get it then maybe we can interest our government in talking to the drug companies to get the cost down.

So far, around the country, 1,000 people are receiving the medicines for free from the government. They are planning that 100,000 people will get ARVs within a year, so we hope that that will be fulfilled. But we don't have all the money we need. So we are hoping that we will get money from the Global Fund, we are hoping for more outside money, and we are hoping that our government will also put some money towards treatment.

The government has recently changed and we want the new politicians to understand the importance of the free program and continue it. So, we are planning to go to the politicians and show them what is going on here and help them understand.

What drugs are the 1,000 people getting in the government program?

One of our pharmaceutical companies, Cipla, is providing a three-drug combination with nevirapine, lamivudine and zidovudine and another one with nevirapine, lamivudine and stavudine. These are three drugs in one pill. I can show you the medication that I take -- It's by Cipla; three together. The separate drugs are also available, for children who need separate drugs. We don't have resistance tests and we don't have many CD4 tests and viral load tests because they are costly in our country. But we are hoping the Clinton Foundation will help us to get CD4 and viral load testing for high prevalence states. That may begin to happen in the next few months.

Where do people go to get treatment now?

The government is giving training for the government doctors. But the country is big and the state is big -- I am from the Tamil Nadu state, and we have 30 districts in our state, but we have only one treatment center. That means in Chennai we are getting drugs in only one clinic and not in the other clinics. We hope that the other clinics will be getting the drugs too, but they don't have the proper resources in the hospital and they don't have doctors who are trained. The training is now going on for doctors and other healthcare providers.

The CDC is helping train the government doctors and staff in our state. Before, we were seeing a lot of discrimination going on in the hospital, but now they are taking better care of the people. People from the positive networks are also there for counseling at the clinic, so there are many changes now. But most people don't have a doctor. There are only three doctors treating about 200 people, and there is no sharing of information between the government doctors and the private doctors.

People with HIV from the INP+ state level network and the district level network are providing counseling, education and training for people living with HIV. At the state level network they are doing DOT training, care training, advocacy training and speaking out as positive people. It is peer education. Before the programs there was a lot of discrimination in the districts but now there are a lot of changes with the community people giving care to people. And the government is also supporting the Network, by giving space for their meetings.

We have separate support group meetings for women and children and then groups for men and women together. We have support group meeting where they can share their own experiences. And we have nutrition education programs and health education programs. And we have separate meetings for people who have started ARVs. We started a treatment education program about eight months ago. People in the government ARV programs in the high prevalence districts are getting information about ARVs and how to take care of themselves. And we have some money for children's education.

What is the situation for women with HIV?

Women are vulnerable, but that is a global problem. In India, many women are not getting care and there are many orphans now. So many of the people infected in India are women -- maybe half and half. Many are mothers. Most are between the ages of 19 to 30. In our culture they can marry at early ages; at 16 and 17 they can marry and have children.

We don't have many doctors who are women's specialists. For example, when the mother-to-child transmission prevention (PMTCT) program started in our country there was a lot of discrimination in the hospitals. Now that has changed a little bit, but the hospitals are still not providing full information and they are not giving women any help to take care of their children. They will give them the medicines while they are in the hospital, but after, the women are not coming back to the clinic.

The government program started in the STD clinics -- the sexually transmitted diseases clinic, but there is a lot of stigma attached to that.

All pregnant women get HIV testing at the hospitals -- not only government hospitals, but all the hospitals. But at the private hospitals they get no information and no counseling. And many in the private hospitals are tested without informed consent. Then if they have HIV, many private hospitals will discriminate against the women. Maybe they turn them away or maybe they refer them somewhere else. Some government hospitals have the PMTCT programs available and women may be referred there. But some women don't know their status and come in late at the time of delivery. After that they don't get follow-up.

Do they give these women who come in late nevirapine?

PMTCT treatment with nevirapine is available in some of the government clinics but not all of them. Information and counseling is available in some of these clinics but not all of the clinics.

Then why do they test if they don't treat to prevent transmission to the baby?

The doctors want to prevent themselves from becoming infected.

So children are still being born infected?

Yes. The government clinics have PMTCT treatment but the women don't know to go there or if they are sent there they don't know why they are being sent to that clinic.

They get no information or education in the private hospitals. In the government hospitals, the counselors talk to people and say they can provide free testing. If interested, the women get an HIV test, but if they are not interested, the doctors in a government hospital will test them anyway. That has happened. If they were less than one or two months pregnant, they were told that they can abort the baby. We didn't have a choice to carry the baby. Now there have been some changes, and we can hope that more changes will come.

We don't have child specialists to take care of a child on ARV. That is another big task for us, to take care of the children. There are only two or three trained doctors taking care of children in all of India.

Are any public figures speaking out to help ease the stigma about HIV in India?

Previously some movie stars have spoken out on the prevention aspect but not on care and support. They are now making a Hindi movie where an actor plays an HIV positive person. Maybe that will help with discrimination. Before, though, movie actors would make HIV into a horrible joke. But we don't have anyone monitoring the media. They can do what ever they want and no one complains.

When did you start taking ARVs?

I started three years ago. My CD4 was 24 and I had a lot of diseases and TB and then Cryptococcus, but now I'm okay. My CD4 increased and I'm living! At that time the medicine was costly, but now it is less because of our advocacy at INP+. In our state, the state tax is waived on ARVs. Also, the AIDS Control Society has a medical shop with better prices; an outside medical shop would charge 20 percent more. Within our clinic in Chennai they are also 20 percent less; about $50 a month. I'm lucky because I can afford it, but not everybody can.

Khousalya Periaswamy is President of Positive Women's Network (PWN+) and Board Member of INP+.

Women With HIV in India Speak Out

In March of 2002, a national consultation on women living with HIV/AIDS was organized by the Positive Women's Network (PWN+), Chennai, India in preparation for a study of the gender dimensions of HIV within a human rights context. The study produced a book entitled, "Positive Speaking: Voices of Women Living with HIV/AIDS" published by the United Nations Development Fund for Women (UNIFEM), South Asia Regional Office.

Despite a clearly enunciated commitment to women's equality in the Indian constitution, women, and especially women with HIV, remain marginalized. The purpose of the study was to make women's voices heard, since "what matters is women's capacity to speak up, demand that they be heard and succeed in motivating everyone concerned to take responsibility. ..." The study is based upon 21 testimonies of individual women's experiences, each with an analysis of the rights that had been violated, the consequences of those deprivations and discussions of specific opportunities to assert those rights, seek redress and better their situations.

Here is one excerpt from the story of Arti, age 26:

"During the pregnancy of my second child, the hospital took a test in the seventh month. They found I was positive so they told my husband that I should go to another hospital. I went to the doctor who had handled the delivery of my first child. He referred us to another hospital. When we went there for delivery we did not disclose our status, because we feared rejection and the hatred that would follow."

"At first my son was fine. One day he developed fever and started vomiting. We took him to the hospital and kept him there for 22 days. He had symptoms of epileptic fits also, so they gave him an injection and after 22 days he was discharged. He was fine for a week and after that he again developed dysentery. He died the same night. We had not revealed his status. But after his death we decided it was better to reveal my elder son's status so that he could get proper treatment. The doctor provided him with good care even after his status was known. But the fever did not stop and he was admitted to the government hospital for pneumonia."

"Though the doctors provided treatment, there was some problem when one doctor at the pediatric ward questioned why an 'STD case' was being kept in that ward. Previously when he was admitted the doctors used to treat him well. I feel that if right treatment had been given on time he would have lived longer. When my son was serious, the doctor was refusing to admit him. But the network members helped me. They got all the gloves and things like that and gave them to the doctor and asked her to admit my son. I was able to get treatment for him because we fought for it."

ARV Drug Procurement in India
Excerpts From a Letter to India's Minister of Health and Family Welfare

The Affordable Medicines and Treatment Campaign (AMTC), is a national campaign aimed at creating an environment that will ensure sustained accessibility and affordability of medicines and treatment for every individual in India.

We are writing this letter to seek your immediate attention and intervention to ensure adequate and sustained supply of antiretroviral (ARV) drugs for the free antiretroviral therapy (ART) programme. As you know, on 1st of April of this year Government of India initiated a free ART programme for people living with HIV/AIDS (PLHA) in the six high prevailing states (Andhra Pradesh, Karnataka, Maharashtra, Manipur, Nagaland and Tamil Nadu) and New Delhi. Even though, the first phase of the programme envisaged 15 delivery points, the present number of ARV delivery points is only seven (one hospital in each state). We estimate that at this pace the treatment plan will cover less than 1,200 PLHAs in the first phase. This is a minuscule number of the PLHA population currently in need of ART in these six high prevalence states. Further, this number is far below the overall target of providing treatment to 100,000 PLHAs within the first year of the programme.

We understand that the inadequate procurement of drugs is the main reason for the inadequate intake of the ART programme. As you are aware, the programme was launched with limited stock of drugs received from WHO, which is inadequate to meet the demand. We feel that only large-scale procurement of ARV drugs can address this issue. As you know, it is the Indian pharmaceutical companies that supply ARV drugs to majority of African and Latin American countries. Indian companies shook the international pharmaceutical industry and civil society by announcing the supply of ARV drugs for $340 per annum against the then international price of $12,000 per annum. These companies went further and are presently supplying ARV drugs for $140 per annum. However, the paradox is that ARV drugs are still not accessible to vast majority of Indian PLHAs. We seek your urgent intervention to end this inequity.

We also have information that the current stock of ARV drugs will be exhausted in July. Any discontinuance in the supply of drugs will have life threatening consequences to those people benefited under the programme.

Against this background, we request you to take necessary steps to achieve the following: To ensure the immediate procurement of ARV drugs before the exhaustion of current stock under free ART programme; to scale up the procurement of ARV drugs to meet the needs of those PLHAs who require immediate treatment; and to engage with the Indian pharmaceutical companies to bring down the price below $140 per annum to increase the accessibility of ARV drugs.