Presentation of the case study: Gandeepam
Gandeepam provides healthcare services through the traditional Siddha medical system to both rural and rural populations through four clinics located in Tamil Nadu. The main objective of this grass-roots organization is to provide low cost medicines using natural readily available plant materials and to present and control HIV/AIDS through education, testing, treatment and care. Gandeepam's first and largest Siddha hospital is located in Kilavayal, a rural area recognized by the Indian government as one of the most impoverished regions of Tamil Nadu (Dr. Vr. V. Ramani, personal communication, August 2010). This was started as a Siddha clinic in 1990, treating common ailments and also a range of other conditions including cancer and diabetes. One additional clinic was established in Thuvarankurichi in 2001 (Trichy district), in Viralimalai in 2002 (Pudukkottai District) and in Puthan Santhai in 2003 (Nammakkal district). The facilities at Viralimalai and Puthan Santhai provide comprehensive healthcare, and HIV/AIDS patients represent the bulk of cases.
Gandeepam has been providing palliative care to HIV patients according to Megavettai guidelines and local traditions for 12 years. Treatments to reduce some symptoms of the disease in the short term and some opportunistic diseases are developed by Dr. Ganeshan and Dr. Ramani, and are used as standard protocols for HIV patients at all Gandeepam clinics. Gandeepam is currently providing palliative care for approximately 2000 HIV patients at three locations throughout Tamil Nadu: Kilavayal, Namakkal and Viramalai. The majority of patients are in stages I and II, and 100 patients are in the chronic stage.
The majority of the Siddha practitioners interviewed emphasized that Siddha treatment did not want to provide an alternative to allopathic treatment (chemical antiretrovirals) but only aimed at reducing short-term symptoms for HIV/AIDS patients.
In addition to standard testing for HIV status, Siddha's primary diagnostic tool, naadi, or pulse reading, is used to diagnose opportunistic infections that are associated with HIV/AIDS. The diagnosis is confirmed by analysis (envagai thervu) of the other body systems: tongue, voice, eyes and the body as a whole. A patient suffering from a chronic or serious illness such as HIV/AIDS will exhibit an unbalanced pattern and intensity in all three pulses. The Siddha medical theory identifies three broad mind–body types: Vatha, Pitta and Kapha. These can be further differentiated as combinations of any one or two or all three of these. An individual's body type informs the diagnosis and determines the most effective treatment (Dr. Vr. V. Ramani, personal communication, August 2010). All Siddha treatments, including those for HIV, are prescribed on an individual basis and aim at reducing some short-term symptoms such as fatigue and lack of energy among the patients. Recognizing HIV manifestations according to body and type is required for proper diagnosis treatment.
Only one of the four Siddha practitioners involved in our study had received a formal training officially recognized by the Government. Almost the entire staff have learned their profession from a member of their family or by reading books on their own.
The practitioners interviewed believed that a blood test was necessary to diagnose HIV/AIDS. Despite this, they affirmed that the presence of this disease could be diagnosed also by examining the pulse of the patient. This diagnostic method is common to the ISM practitioners and is considered to be very reliable. This diagnostic method seems quite controversial for a disease such as HIV/AIDS because of its severe implications, and one can wonder whether the diagnostic tool of taking the pulse is always reliable. A lack of appropriate diagnosis of this disease could in fact increase the risk for other people to be exposed to this disease.
Most of the practitioners believed that the Siddha treatments could help restore the balance of humors, which is manifested by improved health and reduction or disappearance of symptoms. Nevertheless, the practitioners were conscious that they were unable to eliminate the disease but only to improve the life quality of their patients in the short term.
All the practitioners reported using herbal ingredients and minerals and metals when appropriate. Some admitted some minerals and plants have a high toxicity and affirmed that specific procedures were necessary in order to neutralize the toxicity of these elements before giving them to the patients. Most treatments were to be combined with lifestyle modifications, most often involving diet restrictions.
The practitioners also emphasized how the drug preparations were of their own invention and that each drug was targeted to the single patient's needs, age, gender and stage of disease. Each practitioner makes up his or her own treatment regime, slightly personalizing the protocol developed for general use in the clinic.
Gandeepam's Siddha HIV treatment is a combination therapy consisting of three categories of medicines: immune stimulants, antivirals and treatment of opportunistic infections. The treatment with immune stimulants takes place within 1–2 days and lasts for up to 7 days if needed. The treatment consists of natural liquid extract from medicinal plants. An extract containing 27 plants is given for oral consumption every morning to the patient on empty stomach. The antiretroviral treatment begins on day 4. The objective of this treatment is to raise haemoglobin and to build immunity. This medication is given in the form of capsules, containing 10–15 medicinal plants. The treatment for opportunistic infections also begins on day 4.
Four different medicines treat opportunistic infections:
- a powder consisting of 2–10 herbs,
- a semi-liquid lotion consisting of 15–20 herbs,
- capsules of 10–15 herbs and
- an oil for external application and/or for internal consumption.
After this first phase of the treatment, the patient will return for a check-up every 7–10 days from 3 months (Photos 1 and 2).
Siddha treatment is accompanied by dietary guidelines and restrictions. Patients are instructed to avoid excessively bitter food, as they are considered likely to inhibit the potency of the medicines.
The Gandeepam clinic also treats the psychological conditions associated with HIV such as depression, anxiety and suicidal tendencies. This treatment includes Siddha medicines, as well as psychological counselling. The patient's psychological state changes with the progression of the disease, requiring mental health treatment throughout all HIV stages.
Counselling is based on the Siddha principles of body–mind integration (yoga). Disharmony between body and mind is believed to contribute to illness. Gandeepam doctors routinely ask patients to pray according to their individual religious tradition. There are plans to integrate yoga and meditation into treatment regimens.
The combination of the psychological aspects with the drug treatment makes Siddha treatment suitable in complementing the allopathic treatment in order to address short-term symptoms for the patients.
Gandeepam also gives patient and family counselling. This counselling includes education on the nature of HIV/AIDS, how to treat and manage opportunistic infection, and regular flow of information on the patient's conditions.
During our research, the majority of the patients interviewed at the clinic (i.e. 90%) affirmed that this counselling had a positive influence on their psychological state, that is, mental well-being. Most patients interviewed reported that they felt more comfortable with Siddha practitioners than with allopathic doctors. HIV/AIDS patients who had previously received treatment from allopathic doctors reported a strong preference for the warm doctor–patient relationship they found with the Gandeepam Siddha practitioners.
A male patient in his mid-thirties affirmed: ‘Before coming to Gandeepam, I went to a clinic in the city…the doctors were quite detached and they never use to talk to me or explain things to me…. I always felt inferior and I was afraid to speak or to ask some clarifications. Here things are different…the Siddha practitioners are kind and open with the patients…they ask me how things are going with my work and family…they understand how difficult it is to straggle with poverty and to be ill….’
The belief that good physician–patient relationships are associated with better adherence to antiretroviral regimens for HIV infection is widespread and supported by qualitative studies (Holzemer et al., 1999; Malcolm et al., 2003).
Opened in September 2003, the Namakka district clinic serves as the primary treatment and research centre from the Gandeepam programme. At other locations, HIV patients are also seen but in lower numbers. In the last year, Namakkal received 180 patients through referrals. Ninety six were diagnosed with HIV. Between 6 and 15, new patients are seen each week. Each Sunday, an average of 20 patients receive HIV testing at the clinic for a fee of 60 Rs ($1.5). This charge is significantly less than 120 Rs ($3) commonly charged by private hospitals, where poor people can hardly afford to pay this amount of money.
Description of patient study participants
Most patients (i.e. 45%) are between the ages of 16 and 35 years, the prime of their wage earning years. Given this fact, returning to work is of paramount importance to patients.
Two-thirds of the patients that come to the clinic are men, although the presence of women has increased slightly in these last few years. Of the women, 70% are widows, reporting infection from their husbands.
Both interviews with patients from the hospital and the Gandeepam clinic highlighted that the traditional patriarchal societies put women at low risk of HIV infection but men's behaviour is tolerated, even high risk behaviours such as having sexual unprotected relationships with prostitutes. The greatest risk being husbands' behaviour ranging from 1% in general population of antenatal cases to 14% in monogamous women attending STD clinics (Piot, 2001; Parker and Aggleton, 2003). The social hierarchy and the differential power relations that exist blame women for bringing the infection in the family, especially seen when the women have been tested for HIV before their husbands, as what happens in several antenatal clinics (Singhal and Rogers, 2003).
Coping with her HIV status and looking after her child is a double burden that she has to manage along with her own health and social vulnerabilities. Social norms, such as subservience in marriage, which is often reinforced by violence, can compromise women's ability to protect themselves, whereas a husband although asymptomatic HIV positive gets opportunity to leave his wife with AIDS and his children to find another wife (Fife and Wright, 2000).
When women are diagnosed with HIV/AIDS, the psychosocial implications, rather than the physiological impact, become the focus. Although research indicates that the method of transmission affects the level of stigma, this is not true in women (Fesko, 2001). Those infected by their husbands or blood transfusions suffer as much stigma as those who contracted the virus from a sexual encounter with an unknown individual (Reece, 2003).
The interviews highlighted that the majority of the patients are sex workers and truck drivers. Whereas few patients were immediately forthright about their profession as a sex worker, many patients later revealed that they were engaged in commercial sex activity. At first, many sex workers had started their profession as ‘housewife’. Truck drivers often attribute infection to contact made with sex workers while away from their families. Then, infection is further spread by mother-to-child transmission. It is not uncommon for a family to experience the deaths of more than one baby before the woman receives testing and becomes aware of her HIV-positive condition (Chandra et al., 2003).
Thirty of the affected families (i.e. 75%) interviewed both at the hospital and the clinic reported significant economic hardship. Most families receive a total income of less than 2000 Rs ($43) per month, whereas many others survive on less than 1000 Rs ($22) per month. Only a small minority of families owned any assets such a land, cattle, vehicles, television or radio. All patients reported that they had no savings. Every family indicated that they spend the salary they gain to buy food and other goods for daily life. Furthermore, families were often burdened by debt. Overwhelmingly, a debt had been incurred to cover the cost of medical treatments. Healthcare is a leading cause of rural family indebtedness in India.
Patients' motivations and knowledge of Siddha treatment
The patients interviewed were generally aware of the different options available for the treatments for HIV but showed a poor knowledge regarding HIV transmission and prevention, especially those interviewed at the governmental hospital. Many (n = 22, i.e.73%) had heard of Siddha treatments for HIV, and 75% believed that these treatments could be curative. In this respect, a woman in her early forties affirms, ‘When I found out I had HIV/AIDS after the death of my husband, I was devastated as I thought I was going to die soon as well and I need to provide for my children. Then I talked to relative of mine…he referred me to a Siddha doctor, telling me that this doctor had treatment that could lengthen my life by 10 years. This Siddha doctor said that he would be able to lengthen my life, and that he would also be able to decrease my viral load. I feel much better now as I know that I can live some more years and help my family….’
There is also a number of patients (n = 23, i.e. 76%) who were informed of allopathic treatments for HIV, although only a few understood its role in treatment. A small number of patients (n = 7, i.e. 23%), especially women (four of seven patients), were not aware of the existence of either allopathic or Siddha treatments for HIV/AIDS, having learnt about this possibility by some social activists that came in their village. These women highlighted that they were not aware of being infected by HIV till the emergence of the symptoms. Some of them, especially those interviewed at the hospital, affirmed that they realized they were affected by HIV/AIDS after their husband was diagnosed with the disease or after his death.
Most women who had used Siddha treatments affirmed doing so upon the recommendation of their husband or a community leader. A woman in her early forties declares, ‘When I was diagnosed with HIV, I wanted to go to Chennai to get treated with the Western medicine. I trust allopathic treatment more than traditional medicine. I think it is more reliable and effective…anyway…my husband dissuaded me from going saying that it would have been too expensive for us as the clinic was quite far away from here…he also thinks that Siddha is good to treat my disease as he has been treated by a local practitioner here and wanted me to have the same kind of treatment…so I had no choice but to go to a Siddha practitioner….’
This lack of information regarding the therapeutic options available shows that the women have no agency in dealing with diseases and also in deciding about the way they want to be treated, whether with allopathic treatment or Siddha medicine.
Here, too, relationships of power, control, authority and equity may be played out with varying consequences for women's health. The household is the most intimate setting for the playing out of dramas of power, authority and control, all of which may affect women in a number of ways. Male partners, and sometimes in-laws, may control women's access to money and health services (Nussbaum, 2001; Reece, 2003; Martin, 2004).
Patients, mostly men, affirmed that they approached Siddha practitioners to seek a treatment of their HIV infection, usually after some time after the disease was diagnosed. As one male patient in his late twenties stated, ‘At the beginning I could not believe that I was affected by HIV–AIDS. I was feeling well, had the same energy I had before and I had any kind of symptoms. I thought that perhaps there was a mistake in the diagnosis and I continue carrying out my normal life. After some time I started feeling weary. I also stated losing weight and having a temperature…. I could not work as hard as before and thus I decided that I needed to look for a treatment….’
Some other patients reported seeking Siddha for treatment after the emergence of specific symptoms such as genital lesions or skin problems. This attitude was especially frequent among women. One 48-year-old woman declares, ‘After I found out I was affected by HIV, as I was symptoms-free, I thought that I did not need a treatment…when I developed genital lesions my husband took me to see a Siddha doctor.’
This delay in health seeking from the women affected by HIV can be explained by several factors. These can be linked to fear of social isolation, economic constraints, and inadequate staff attitudes and poor quality of health services (Stein and Nyamathi, 2000). Stigma attached to HIV/AIDS is described in the literature as closely related to contextual factors such as gender roles, socio-economic status and level of education and seems to be mediated via denial and concealment of HIV/AIDS diagnosis and disease, thus causing delay (Chandra et al., 2003).
Generally, women with HIV/AIDS are hesitant to access healthcare for fear of breach of confidentiality and perceive stigma from provider, and are reluctant to take medications that identify them as being ill (Sullivan et al., 2004). Women are afraid that disclosing that they are HIV-positive status may result in physical violence, expulsion from their home or social ostracism, or their property being seized after their partner died (Bird et al., 2004).
Other important factors contributing to delay among women can be represented by fear of individual costs of diagnosis and treatment, especially when the women are widows (Reece, 2003; Sharma, 2004). Staff attitudes and quality of health service facilities are also described in the literature as not always corresponding to women's expectations of appropriate health services. Women saw themselves and were seen by others as being more sensitive than men to poor service conditions and staff attitudes.
A majority of patients (n = 23, i.e. 76%) cite the short duration of the Siddha treatment (3 months) as one of the primary reason on their choice to be treated by Siddha practitioners.
Another important factor that is kept into account by the patients interviewed in selecting the treatment for HIV/AIDS was the cost of the treatment. Two-thirds of the patients, especially the women who were widows, affirmed that they were not able to pay the money to have access to an allopathic antiretroviral treatment offered in private clinics. The high transportation costs to reach the closest city where the allopathic treatment was available also represented an important aspect that dissuaded these patients, especially women, to take allopathic antiretrovirals. As a 32-year-old man affirmed, ‘I went to the city to have an allopathic treatment. I was feeling better and my health conditions improved but I was only able to take the treatment for 4 months because I couldn't pay for more…so I had to stop and I stated being treated here as it much more economical….’
Another reason mentioned by the patients who for their recourse to Siddha treatment was the fear of side effects from allopathic treatments. A young man in his late twenties declares, ‘I decided to use Siddha treatment as I did not want to experience the side effects of antiretroviral drugs such as diarrhoea, nausea and vomiting and skin rashes…. A friend of mine was given an allopathic drug and he developed a very bad skin itching…so I did not want to find myself in the same situation….’
It is important here to emphasize how most side effects are not uniquely associated with a particular drug, and sometimes it can be difficult to identify the cause. HIV itself is capable of producing many of the symptoms that also occur as drug side effects. Other possible causes include opportunistic infections, stress, diet and non-HIV drugs (Kumarswamy et al., 2003; Alberg et al., 2009).
Symptoms and improvements
In the majority of the cases (i.e. 70%), patients have been treated for an average of one/one and half years. HIV-positive patients commonly reported symptoms of cough, fever and body pain. In numerous cases, some symptoms were alleviated within 2 weeks of the beginning of the treatment. Moreover, patients reported weight gain (+3 kg) and a corresponding increase in energy and strength by the end of the first month's treatment course. Despite this encouraging result, doubts still remain regarding how this outcome has been produced and how it can possibly be explained. Could the alleviation of the symptoms be explicable by a better state of mind or as a form of relief at having treatment? Further studies would be necessary in order to provide a possible explanation of the effectiveness of Siddha medicine for the treated patients.
Another important concern is represented by the effectiveness of this alternative treatment in the long term. Indeed, another important question that needs to be answered is how long the health improvement highlighted by the interviewees will last. At the moment being, considering the paucity of scientific studies on the efficiency of Siddha medicine, it is hard to establish if effective results have actually been achieved. In fact, it cannot be proved that the symptoms associated with HIV/AIDS can disappear in the long term, as this can take a few years to know.
In the absence of long-term patients (more than 2 years) for the moment being, it is hard to have reliable data that allow to show how the health conditions of the patients treated with Siddha medicine evolve in the long run and thus to show the effectiveness of the treatment.
Besides, it would also be important to understand up to which point long-term patients (those who have been treated for more than 2 years) would be ready to bear the costs of a treatment that is prolonged in the long run. This aspect is particularly crucial in terms of the efficacy of the Siddha treatment for HIV/AIDS. As a Siddha doctor interviewed at the clinic points it, ‘It is important in order to ensure the effectiveness of the treatment that the patients continue it for at least 2 years…sometimes the patients see a fast improvement in their health conditions within the first four to six months and they stop coming to the centre…this is detrimental as it can undermine the positive results of the treatment in the long term.’
Some patients reported improvement in their symptoms with Siddha treatment, which in some cases, they and their practitioners misleadingly equated with a possible cure of HIV/AIDS. One patient declared that he ‘was affected by constant fever and a loss of appetite but these symptoms were resolved by taking the Siddha medications.’ A Siddha practitioner at the clinic highlights that one patient ‘had constant cough and diarrhoea when he was initially diagnosed, but he is symptoms-free now, after the treatment…. In fact he was cured from HIV and now he was to get married and lead a normal life.’
This aspect seems not to be fully considered by the Siddha practitioners interviewed. The latter are more concerned with the efficacy of the treatment in terms of improvement of the symptoms and the subsequent capacity of a patient to resume a normal life.
The association of these patients between lack of symptoms and lack of disease, especially in the case of HIV/AIDS, constitutes a particularly alarming phenomenon, as it can easily lead to risky behaviours and thus to an increased spread of the infection. The lack of understanding of the difference between perceived short-term benefits by the patients and actual clinical benefits has in particular been highlighted by the allopathic doctors interviewed at the hospital. These latter emphasized how the reduction of HIV/AIDS symptoms, especially in the initial stages of the treatment, could lead to the adoption of risky behaviour among the patients with deleterious effects on the spread of HIV/AIDS. This aspect should be addressed by local health authorities through awareness campaigns that emphasize that there is no cure for HIV/AIDS at the moment and that it is extremely important for the people affected by HIV/AIDS to use protective measures in order to avoid the spread of this disease.
One woman in her mid-thirties affirmed, ‘All my family is HIV+. Since we contracted infection, we have lost two new born babies to HIV/AIDS. I was feeling very weak and I was also suffering from depression. My husband was also very ill. The disease drained his strength and reduce his energy to the point that he was unable to lift himself off the floor once sitting. He was an electrician and the loss of strength cost him his job. My son was also very ill with cough, fever and diarrhoea. We were really in a desperate situation. After three months of treatment, my husband reported a full return of strength and energy. He has gained 4 kg and can now ride the bicycle every day. His symptoms arrested after a few weeks of treatment. As a result he could return to work. I am also symptom free although I always feel depressed.’
A 43-year-old woman affirmed, ‘I have three children and I am a widow. I am a flower seller. Before the treatment I was just at the edge of economic survival when HIV undermined my capacity to work. I was terrified that my children would grow up as orphans with no one to care for them, and at the same time I felt suicidal. When my family and neighbours became aware of my condition, they rejected me. I was feeling completely exiled by my community and family. My eldest daughter's marriage was also negatively affected by my condition. When I heard about the treatment available at Gandeepam I was really motivated to try, especially for my children. Now, after 4 months of treatment I feel much better, and I have the same level of energy I had before the infection. Moreover, despite the recommendations from neighbours that I should have turned to prostitution to gain my living, I am able to avoid this occupation by returning to work as a flower seller. I feel much more confident now that I am able to provide for my family and send my children to school.’
Being a parent seems to be a very important factor capable of motivating patients to try the Siddha treatment for HIV/AIDS. This is especially the case for women who are single mothers and who feel stronger the moral responsibility to support and assist their own children. Seventy-five per cent of the interviewees who were single mothers emphasized how their family status pushed them to seek for a treatment and to go for the Siddha medicine.
In India, as elsewhere, AIDS is often seen as ‘someone else's problem’—as something that affects people living on the margins of society, whose lifestyles are considered immoral. Even as it moves into the general population, the HIV epidemic is still misunderstood among the Indian public. People living with HIV have faced violent attacks, been rejected by families, spouses and communities, been refused medical treatment, and even, in some reported cases, denied the last rites before they die (Gupta and Sankar, 2003; Kumarswamy et al., 2003).
The denial of these rights increases women and girls' vulnerability to sexual exploitation, abuse and HIV infection and re-infection. The impact of epidemic on women and girls is especially marked as they face heavy economic, legal, cultural and social disadvantages. According to the Centers for Disease Control and Prevention, the number of women with HIV/AIDS continues to increase. Women with HIV/AIDS are not rare but hidden.
Discrimination is also alarmingly common in the healthcare sector (Kumarasamy, 2004; Sharma, 2004). Negative attitudes from healthcare staff have generated anxiety and fear among many people living with HIV and AIDS. As a result, many keep their status secret. It is not surprising that for many HIV-positive people, AIDS-related fear and anxiety, and at times denial of their HIV status, can be traced to traumatic experiences in healthcare settings.
A recent study found that 25% of people living with HIV/AIDS in India had been refused medical treatment on the basis of their HIV-positive status. It also found strong evidence of stigma in the workplace, with 74% of employees not disclosing their status to their employees for fear of discrimination. Of the 26% who did disclose their status, 10% reported having faced prejudice as a result (Milan et al., 2008).
Stigma is made worse by a lack of knowledge about HIV/AIDS. Although a high percentage of people have heard about HIV/AIDS in urban areas (94% of men and 83% of women), this is much lower in rural areas where only 77% of men and 50% of women have heard of HIV/AIDS (NACO, 2003). This lack of information and knowledge about HIV/AIDS in rural areas in India is also confirmed by more recent studies (Rogers et al., 2006; Chandrasekaran et al., 2008).
A 38-year-old man affirms, ‘After the Siddha treatment I feel much better…I also feel less depressed. The Siddha doctors treated me with compassion and closeness and this uplifted my spirits and helped me to recover from the dejection I felt upon being rejected by my neighbours and family.’
Challenges to healthcare-seeking behaviour in Gandeepam
After having presented these positive cases, where the Siddha treatment has had a positive impact in improving the life conditions of these HIV/AIDS patients, there are also some different experiences.
Some patients (n = 7, i.e. 23%) stated that they had stopped taking their Siddha treatment because of some side effects they experienced. One patient in his forties declared, ‘After taking these remedies, my skin became red and itchy and started having nausea therefore I stopped the treatment.’ A woman shortly after the treatment also affirms, ‘I started the Siddha treatment but I was still feeling very tired and without energy…I continued having diarrhoea, so I decided to stop taking the treatment.’
For a number of patients, Siddha treatment, often aimed at symptom relief and boosting of the immune system, was unable to cure a serious but treatable underlying condition. One patient started having high temperature and took some herbal remedies for some time without any improvement. As the fever was coming back all the time, he was finally hospitalized after a few months and diagnosed with advanced tuberculosis and serious health conditions that could have been effectively treated should he have been diagnosed before.
A few patients also affirm that the Siddha treatment was very effective in the first few months, but its efficacy decreased afterwards: ‘I took the Siddha treatment for almost a year, at the beginning I did a blood test and viral load went down…. After eight months I checked my blood tests again and I have seen that my viral load had risen again…I don't know why this happened.’
Although there are very few studies on the efficacy of Siddha on viral diseases such as HIV/AIDS, we can possibly explain this phenomenon with the fact that perhaps the patient might have developed a form of resistance to the active ingredients present in the Siddha treatment in the same way that people can develop resistance to antiretrovirals.
Gandeepam's HIV programme has developed out of its community outreach efforts. At the Namakkal clinic, there are five field staff members who are responsible for covering specific geographic zones within the district. These bare foot doctors spend part of their time on the field trying to build relationships with their communities so that they can effectively raise awareness of HIV. This position of field staff members can facilitate the process of trust building with the members of the local communities and place them in the position to learn of the individual's health problems. The creation of these relationships with the villagers can make these local communities increasingly receptive to messages about HIV education and prevention.
A patient interviewed affirms, ‘I got to know about the Namakkal clinic through the meetings organized in our villagers by the members of the clinic. They came to our village and started talking to us and explaining to us the importance of natural ingredients like plants and minerals to treat our diseases…they also explained the side effects of allopathic treatment…. They also talked about the issue of HIV/AIDS and what we can do to deal with it.’
In order to promote traditional medicinal knowledge in the long term, it may be necessary to increase the villagers' awareness of the importance of using medicinal plants as an effective and side effect-free form of treatment. It nevertheless sends a somewhat ‘false’ message because medicinal plants also have side effects if one does not know how to use them properly. Presenting traditional medicine as a panacea may create the same problem as what we are currently seeing with allopathic medicine. That traditional medicine has no side effects seems to be a strong message spread by the NGOs that could not be accurate.
Community outreach is also a key mechanism through which community members are motivated to be tested for HIV/AIDS. As the field staff become aware of the health ailments experienced in the community, they are in a position to recommend testing for HIV/AIDS. This is not always easy, as the villagers sometimes fear to be rejected and discriminated against by the community and they are likely not to easily disclose their health conditions.
Given the taboo status of HIV/AIDS within Indian society, Gandeepam's community outreach is proving effective in promoting AIDS awareness and prevention.
Interviewees (n = 21, i.e. 52%) revealed that few patients had been aware of Siddha treatments for HIV prior to Gandeepam's introduction through its field staff. For the many HIV-positive individuals who cannot afford allopathic ARV treatment, patient interviews confirmed that the Siddha's treatment is widely seen as the only viable opportunity for patients to experience a return to health.
Providing accessible treatment is a part of the Gandeepam's community outreach programme. This aspect is particularly important: the interviews have confirmed that affordability is a major criterion for patients considering different treatment options. Although Gandeepam receives some occasional funds from international NGOs, the clinic is mainly funded by local patients' fees.
The cost of the treatment is much lower if compared with allophatic treatment, and many poor families, unable to pay for private healthcare, turn to government facilities that are also free. Despite this, as previously emphasized, one can wonder regarding the safety of this treatment and its effectiveness in the long term.
The aspect of price seems very important to motivate local patients to undertake the Siddha treatment. Interviews at the government hospital in Nakkal with patients, doctors and nurses indicated that government facilities are not yet able to provide ARV. Only limited medication is available to treat opportunistic infections, and many patients interviewed reported that they had received only a glucose drip when they went to the hospital. Nearly all patients interviewed reported feeling no better than they had at the time of admission to the governmental hospital.
Gandeepam is not alone in providing Siddha treatment for HIV/AIDS. Many patients interviewed had taken Siddha treatment at the government hospital of Thoracic Medicine, Tambaram Sanatorium in Chennai. The hospital also gives free treatment to HIV/AIDS patients. The hospital is well recognized for its use of Siddha medicine for anti-viral and immunity-enhancing effects. Overwhelmingly, however, patients interviewed indicated that the clinic's location in Chennai, 400 km from Namakkal, caused considerable burden in travel time, expense and loss of wages. While encouraged by the results they experienced at the Gandeepam clinic, patient interviews confirmed that Gandeepam proved to be a more viable treatment option for individuals living within the Namakkal district, although some of them declared their scepticism regarding the efficacy of Siddha treatment for their condition.
There are not many studies available in India that illustrate the healthcare-seeking behaviour among HIV-infected people and how people are treated among the community (Bhat, 1996). Despite the fact that rural practitioners currently represent one of the most popular forms of healthcare resource in Indian rural areas, HIV/AIDS included, there is a paucity of studies focused on them (WHO, 2002).
Therefore, although antiretroviral implementation programmes continue to expand, it is important to determine whether the knowledge, attitudes and treatment practices of HIV-infected individuals and their healthcare providers are aligned with current treatment recommendations. Failing to acknowledge and address local beliefs and healthcare practices may compromise the long-term success of HIV treatment programmes (Sharma, 2004; Thomas et al., 2007; Hardon et al., 2008).
In many countries, the inclusion of anti-HIV ethnomedicines and other natural products in official HIV/AIDS policy is an extremely sensitive and contentious issue (Homsy et al., 2004; Kayombo et al., 2007; Langlois-Klassen et al., 2007). In the past decade, there has been a sustained bioprospective effort to isolate the active leads from plants and other natural products for preventing transmission of HIV and managing AIDS (Asres et al., 2001; Vermani and Garg, 2002). Screening of plants based on ethnopharmacological data increases the potential of finding novel anti-HIV compounds (Fabricant and Farnsworth, 2001). Indigenous knowledge of medicinal plant use also provides leads towards therapeutic concept, thereby accelerating drug discovery; this is now being called reverse pharmacology (Sharma et al., 2006). Thus, it is important to search for novel antiretroviral agents that can be added to or replace the current arsenal of drugs against HIV (Klos et al., 2009).
Several important elements have been emphasized by our interviews with HIV/AIDS patients and local Siddha practitioners.
First, a high number of patients interviewed turned to Siddha treatment for essentially a reason of economic nature rather than ‘ideological’ (e.g. desire to be treated with a more natural form of medicine).
As previously emphasized, the patients living in the area under study, especially the women who were widows, do not possess sufficient financial resources to access allopathic treatment. This lack of financial means and the traveling distance to the clinics represent factors that play an important role in determining the exclusion of these HIV/AIDS patients from the allopathic system.
Another point that explains the popularity of the Siddha treatment in the area under study is the belief, among certain patients, that such practitioners offer a permanent treatment for HIV.
A central concept in Siddha, as well as in the other Indian traditional medicinal systems, is the idea that the disease is produced by a lack of balance between human beings and nature. This disharmony has negative repercussions for the body humors, and it can be restored through therapy. Relief of symptoms, perceived as a successful restoration of balance, is generally equated with a cure (Gogtay et al., 2001; Saper et al., 2008). As previously emphasized, such a symptom-based concept of health and illness, when applied to a disease entity such as HIV/AIDS, can have deleterious effects on the spread of the disease, as it can help facilitate the transmission of HIV through the adoption of risky behaviours. This idea can also prevent patients from receiving allopathic therapy in the future and from being treated for serious opportunistic infections such as tuberculosis.
Another important point that needs to be considered is the fact that traditional medicine such as Siddha can also have side effects in certain circumstances. This risk is not remote, considering the fact that there is a paucity of studies on the efficacy and safety of this form of alternative medicine. Although in theory it is possible that certain herbs and minerals may boost the immune system, exert antimicrobial activity, relieve symptoms and provide other significant benefits to HIV patients, certain compounds have a high potential for adverse events (Deivanayagam et al., 2001; Mills et al., 2005; Oguntibeju et al., 2007; Saper et al., 2008).
A growing literature illustrates that the use of dietary supplements and other forms of complementary and alternative medications (CAM) is common among HIV-infected persons in developed countries (Bagchi et al., 1999; Oguntibeju et al., 2007; Milan et al., 2008).
This type of coexistence of allopathic and non-allopathic approaches is likely to be relatively safe, provided that patients communicate clearly with their physicians about the CAM therapies that they are using. We suspect that this type of healthy coexistence will be far more difficult to achieve in India, where traditions of and beliefs about Siddha are long standing and deeply held, and where the collaboration between traditional medicine and allopathy is hindered by a growing competition and strong economic incentives.
Little is known about traditional medicine use or its risk and benefits in HIV/AIDS management (UNAIDS, 2008). A survey of 1667 HIV-infected persons in four regions of India found that 41% reported using some form of traditional medicine, although only 5% believed traditional medicine was more effective than allopathic ART (Saple et al., 2002; Brugha, 2003). With many products prepared locally as well as available on the market and claims of ‘cure’ being made (Ahmad, 2007; Thomas et al., 2007), there is a need for patients, providers and policy makers to assess systematically the potential benefit as well as potential harm associated with traditional medicine therapies for HIV/AIDS.
Overall, studies found the methodological quality of published research on traditional medicine for HIV/AIDS to be poor, regardless of study design. General reasons for this poor methodological quality included lack of details on products and their standardization, small sample sizes and high loss-to-follow-up rates. Design flaws included selection of inappropriate and/or weak outcome measures, uncertain representativeness of the study population, inadequate methods for determining exposure and outcome in observational studies, and short follow-up periods.
Another important point that emerged in the interviews is the fact that gender represents a factor that influences the access to treatment for HIV/AIDS, also in the context of the Siddha medicinal system. As emphasized previously, the women interviewed demonstrated less knowledge than men concerning the treatment available for HIV. The interviews also show how women have less capacity to take autonomous decisions regarding the type of treatment for HIV/AIDS they want to have. This can be explained by the less access to financial resources and more difficulties they have in leaving their home and family duties to access care. More than one-third of the women interviewed affirmed that at the beginning of their disease, they did not seek medical care because of perceived good health and a lack of symptoms or limited knowledge about the available treatments. This contrast with the situation of men: the latter appeared in general to be much more aware of the different options for the treatments and seemed to have greater access to them. They were more likely to consult Siddha practitioners for treatment of HIV/AIDS and the associated diseases, to self-medicate, and to undergo multiple different treatment regimens throughout their disease course.
What possible way forward?
Since 2001, Gandeepam has made clear its intention to pursue randomized control clinical trial (RCT) evaluation of its HIV medicines. A model for such a trial has been designed through dialogue between Gandeepam Siddha medical personnel and the University of Oxford's GIFTS of Health research team.
GIFTS of Health in conjunction with Gandeepam physicians and clinical researchers at the Delhi Society for the Promotion of Rational Use of Drugs, National Institute of Immunology, has developed a clinical research methodology for both pilot studies and for full RCTs. This methodology takes into account the patient's mind/body type, disease stage, age and gender. Patients and control subjects will be divided for clinical testing according to this matrix.
Attempts to measure the efficacy of CAM by using RCTs and other forms of scientific assessment, which are highly ranked in the hierarchy of evidence, are philosophically and theoretically problematic (Borgerson, 2005; Barry, 2006; Villanueva-Russell, 2004; Goldenberg, 2006). Philosophically, the reductionist characteristic of positivist epistemology that underpins biomedicine's view of efficacy and focuses on the removal of symptoms and diseases, is too narrow to evaluate CAM that deals not only with diseases but also with holistically affective, social and spiritual well-being aspects. Theoretically, the difference in knowledge about human anatomy and physiology, disease aetiology, classification, and diagnosis between biomedicine and other medical systems entails different sets of definitions and measurements of effectiveness as well as criteria for evaluating the success.
Many studies observed a distinction between epistemologies that underpin biomedicine and Asian medical systems. Unschuld (1987) insists that epistemological differences between Siddha and Western medicine actually lie in the differences in attitudes towards truth or what he calls ‘patterned knowledge’ in Indian knowledge tradition versus homogeneity in Western monoparadigmatic science. Shankar (1995) traces ancient inscriptions of indigenous Siddha and Ayurvedic knowledge to its origin. ‘Brahma’—a state of mind that unites one with nature—is considered the core of knowledge attainment in Indian tradition. He also points out the distinction between modern and traditional approaches in knowledge verification. Whereas modern experiments need to isolate a study object from its environmental context and limit confounding factors in order to measure the effects of varied controllable parameters, the traditional approach attempts to examine a study object in its entirety together with its interlinkages and complexities.