When D T Thyagaraj (50) of Padmanabhanagar, suffered a heart attack 10 years ago, he was wheeled into one of the prestigious hospitals in Bengaluru. Once he survived the attack and was out of the ICU, Thyagaraj sensed that the world around him had changed so completely in so short a time. First he was isolated from the general ward and then supplied food in plastic plates. The doctors and nurses armed themselves with double gloves each time they came to check on him. Their hush-hush talk, suspicious glances, and curt answers left him and his family shocked.

Launch of the first ever health insurance policy for people living with HIV held in Bangalore on August 13, 2008. (From Left). Sanjay Chaganti, C P Uday Chandran, K Sujata Rao, B Sriramulu, Asha Ramaiah, George Deikun, K K Abraham, and P Saroja Kanchan. Pic courtesy: PSI.

Almost a week into this ordeal, Thyagaraj was at his wits’ end. He refused to remain silent and protested against the ill-treatment. Only then did the hospital staff reveal his HIV-positive status. Suddenly, Thyagaraj realised that ‘being positive’ meant something else and that the same was being felt by a community of 2.5 million people (NACO, 2006) all over India.

After years of positive life and discrimination in all spheres of life, Thyagaraj now has a renewed sense of hope and confidence when he says “things are changing”. He has been the State Insurance Co-ordinator, Karnataka Network of Positive People (KNP+), Wilson Garden, Bangalore, for a year. Also, he is the policy-holder of the first-ever insurance package launched by Star Health & Alliance Insurance Company Ltd, and Population Services International, with support from USAID in August 2008.

Insurance – a positive change

This change couldn’t have come at a better time. Although the first serological evidence of HIV infection surfaced in 1986 in Chennai, the focus of government-led efforts and those involved in AIDS battle was largely confined to creating awareness about HIV/AIDS, preventing new infections, drawing up nutrition charts, offering care and support, and organising rallies to drum up public support. One crucial issue has remained unaddressed: a secure life for those already infected as they are under constant threat of losing jobs and family support.

This is where treatment and more importantly, its access and costs come in.  Anti-Retroviral Therapy (ART), consisting of at least three anti-retroviral drugs to suppress the HIV virus, has been the most effective form of treatment so far. Although these drugs are being distributed freely, targeted government initiatives are leaving many out of coverage. The government also offers treatment for tuberculosis (TB) – one of the deadly opportunistic infections suffered by people living with HIV (PLHIV) – free of cost.

However, free ART and TB medicine do not alone complete HIV treatment. With immunity levels dipping constantly, the infected people need life-long medical attention at a very high cost. Moreover, certain recurring infections or RIs like herpes and diarrhea call for hospitalisation. Then comes the question of quality healthcare in an atmosphere free from stigma and discrimination – which has been a major issue as far as the public health sector is concerned. While the rich prefer private treatment, a majority of the PLHIV from poor and middle-class population can ill-afford the same unless covered. This means, it’s not only the infected individual whose finances are at risk, but also the caretakers of his family, infected or not.

As this alarming situation was emerging, the possibility of a health insurance package targeting the HIV-positive population wasn’t considered a viable venture by the government or the private insurance sector. On its part, the central government covers only those PLHIV working for the Railways and the Armed forces; whereas some PSUs offered coverage through Central Government Health Scheme and Employees’ State Insurance Corporation. But this covered segment is extremely small and the possibility of the poor falling under this category is even smaller.

Insurance policy took shape in NGO’s laboratory

“This is where we stepped in,” says Atul Kapoor, Director, PSI, an NGO that addresses the health problems of the low-income and vulnerable population with help from the private sector. Headquartered in Washington DC with its India head office in New Delhi, PSI also has programs focusing on malaria, child survival and reproductive health.  In Bangalore, PSI is based in Kumarapark West.

To boost public-private partnership, PSI started talking to various insurance companies and finally found that Star Health already had a policy designed but had no takers for months. “We were aware that many positive people could not put up with the mounting hospital expenditure and had to sell their assets or dig into savings. This severely affected their mental health and even cut short their lives. Those who could have otherwise lived for at least 15-20 years after infection, died much sooner as they didn’t have emotional and financial support.”

Based on the data collected from years of research in this area, PSI knew a large segment wasn’t even aware of health insurance. “When we saw the Star Health policy, we thought it needed some more chiselling and got down to the specifics. We did face difficulties in the beginning. We turned PSI into a laboratory where work on a good insurable product went on for months. Since it was difficult to approach each positive individual, we tied up with KNP+ and decided to offer it as a group policy with at least 300 aspirants. But we came across people who were interested in the policy but could not pay the premium of Rs 1511 a year for Rs 30,000 coverage. Once we decided to bear half the premium cost, the policy took off.”

More than a year into the launch, the response has been tremendous, says D Rama, Vice-President, Star Health, Chennai. When asked what made the firm think radically when all the firms were playing it safe, Rama says: “very simple. We are a stand-alone company and we cannot afford to ignore any segment. We should have everything in our bouquet. HIV is something that is excluded by every policy. Why exclude something that is staring at you; when a significant number of people are affected?”

Making it clear that they could not have designed this product unless there was reliable data collected from fieldwork, Rama adds that originally when the product was conceived, they were very sure that it was not for the retail segment because maintaining the confidentiality of the person is crucial and nobody would come forward. So the sale of the policy was positioned through NGOs and other partners which are parties in the field, says Rama.

“We wanted it to sell and not to create any ruffle in the already existing pattern of operation. But we think the government participation is very important and we have sent a representation to the central government to remove the service tax (12.36 per cent) component. This will help the beneficiaries further”, she adds. 

Venkatesh, 40, Wilson Garden, Finance Officer of KNP+, feels that apart from the financial security, this insurance package has tackled a couple of serious issues: discrimination and lack of immediate medical care.

Venkatesh quit his job as finance officer from a chit funds company in 2000 after his friends and colleagues started isolating him. “My parents and wife (also positive) started living separately. This happened mainly because I didn’t have enough money for treatment. This is the case with many people. The family discriminates them mainly because it cannot bear the medical expenses. But life is definitely better now. I have bought a policy for my wife also and she recently claimed Rs 3000 for herpes treatment. At least we can be sure that we have some care until we are discharged from the hospital. We didn’t have this earlier. My parents are now calling me back. But I am not feeling up to it.”

Complaints from policy-holders

A year after the launch, policy-holders had complained about the complicated claim procedure, crucial exclusions like recurring infections, and also communication gaps thanks to automated replies. However, this year, the firm has included many RIs and also hysterectomy (a major health problem among the positive women) but with a two-year waiting period. So far, nearly 2,500 positive people have bought the policy.

One such beneficiary of the revision in policy terms is Shanthamma, 34, of Kanakapura Main Road, former State Treatment Education Officer of KNP+. She contracted HIV through her husband but the couple came to know about their status only after they hospitalised their terminally ill nine-year-old positive daughter in 2005.  Shanthamma has been actively involved in counselling people on various AIDS-related issues including insurance.

“There were many exclusions in the first year. Thankfully, this year they have included certain recurring infections. This has been helpful. More than any serious illnesses, we spend a lot of money on these RIs. My husband could not be covered as his CD4+ count (helper cells – which are crucial to the normal function of the human immune system) is very low. But at least I am covered and even if both of us get hospitalised, my expenses are taken care of.”

Rama clarifies that the call centres are now equipped with a staff that can handle calls from all the states they have a presence in. “We are constantly working to improve the package. PSI is asking us to factor in the funeral expenses of people who die even before the treatment begins or the claim is made. We are looking into that as well. We cannot give solutions to all their problems but we are doing everything we can to give them emotional support.”

Thyagaraj, however, regrets that despite higher level of awareness and education, KNP+ is yet to gather enough numbers from Bangalore city. A baffled Thyagaraj blames it on the inherent disbelief in flawed claim procedures and insurance frauds. He feels the people have often doubted whether the KNP+ was up to making profits. “We have 1,100 policy-holders from all over Karnataka but only 180 of them are from Bangalore. We are getting a great response from many districts, especially Bellary with 300 numbers which was drought-hit till recently. It is so strange that Bangalore is lagging behind.”

City statistics

Numbers from HIV/AIDS tests conducted between April 2008 – to March 2009 in Bangalore city.  Tests are conducted at Integrated Counselling and Testing Centres (ICTCs).

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