© 2010 Prithvi, All Rights Reserved.
Contact: prithvi10@vsnl.com
Project Positive HOPE Preliminary Report on the HIV situation in Nagar Taluka, Maharashtra, India
22 April, 2005
On 16 January, 2005, Project Positive HOPE (PPH), a rural HIV intervention initiative of the NGO Prithvi opened its first clinic in Arangaon. Called The Wellness Center, the clinic is initially offering HIV and health care education, HIV / AIDS counselling, and treatment referrals. The Center’s initial aim is to assess the impact of the HIV epidemic in Nagar Taluka preparatory to expanding services.
During the 3 months the Clinic has been open, there has been no publicity or outreach. In spite of this, the PPH counsellor had contact with 208 HIV infected and affected people in villages in Nagar Taluka. 56 of these people received at least one session of counselling. There is a terrifying breakdown along gender and generational lines, which starkly illustrates the situation in this rural area:
Of these children, 3 were orphans who had lost both parents. Only 2 had both parents alive. The rest of the children were living with their mothers, or in care.
This is the face of HIV in rural Maharashtra – ignored, hidden and deadly. HIV, AIDS and AIDS death is here, in every village. HIV / AIDS is tearing apart the fabric of the rural family and community, fueled by sexual promiscuity, alcoholism and gambling, aided by poor hygiene conditions and ignorant and unsterile health care practices, and fanned to a flame by the powerless position of wives.
Infection rates among pregnant women at the Antenatal Clinic at the Civil Hospital in Ahmednagar are between 1& 2%. This indicates that HIV infection in the general population has likely reached the level where 1 – 2 people out of every hundred are HIV positive. Antenatal statistics from a government hospital are a skewed and inadequate measure, but the only one available to indicate current infection rates.
Men are the primary source of infection spread in the rural as well as urban areas. Alcohol consumption, gambling and frequenting prostitutes are the main off-work activities for many village men. When they fear they are HIV positive, they test in secret, and try desperately to find cures. They do not tell their wives of their positive status for months to years after discovering their positivity, nor often their families. They are tremendously vulnerable to exploitation by quacks and doctors who play to their fears.
The secondary status of women in rural India fuels the infection rate of HIV. Women do not have the power to demand an HIV test, prior to or during marriage. They do not have economic independence or income, and tend to be the most menial member of the husband’s extended family. Pregnant women coming to government hospitals are forced to test as part of their antenatal work-up. There is no informed consent to the procedure. If they are found HIV positive they are blamed for the infection, and face expulsion from the family and ostracism by the community. Many other women find out that they are at risk of HIV when their husband sickens and dies of AIDS. They do not seek help or treatment until after their husbands are dead, and then only when they become weak and ill. They are not seeking a cure, but rather help and support. They are generally destitute and desperate, and still trapped in dependency and unable to care for themselves. Some live with their birth parents; others live alone or in isolation on the edge of villages, cared for a little by neighbors.
The ones who suffer the most are the children, many of whom are also positive – around 50% of our sample. Often rejected by their paternal family, they live in abject poverty with their destitute mothers, or are abandoned and orphaned. A large number of children are not tested, either because they are too young to have accurate test results, or because the family or mother cannot face another positive diagnosis – they do not have the resources or the courage.
Medical intervention is criminally inadequate and dangerously uninformed in Ahmednagar and the surrounding areas.
Of 82 people counselled by the HIV Counsellor (56 in Nagar Taluka and 26 in Pune), 28 had been prescribed Anti-Retroviral Therapy (ART) drugs by their physician. These drugs are not a cure for HIV, but are an expensive regimen to reduce symptoms and slow the progress of the disease. Once a person begins a course of ART therapy, they MUST stay on the medication for the rest of their lives. It is not like an antibiotic that is taken for a short while until the symptoms are gone, but more like insulin treatment for diabetics, in that it must be taken carefully every day. Thus, a patient on ART needs to be carefully counselled about need for compliance to a long-term treatment programme, as well as the long-term cost of the medication. The physician needs to be prepared to monitor the drugs for resistance and for side effects, which can be serious. Moreover, these drugs MUST be given as a 3-drug regimen, with each drug attacking the virus on a different level. Mono-drug therapy and 2 drug therapy are expensive, completely ineffective, and foster resistance to further HIV treatments, even shortening the patient’s life.
Of the 28 patients who had been put on ART ALL had stopped taking the medications within 6 months! NONE had been counseled about the financial issues, or side effects. Most were told BY THEIR PHYSICIANS that the ART medications would CURE HIV and they should take the medicines “while they were sick.” NONE realized that this was a lifetime commitment.
Furthermore, the majority of the patients were put on a 2-drug ART regimen, and not even minimal testing was done to determine the status of the patient with regard to their immune system (CD-4 Count or overall Lymphocyte count) and the presence of the virus (Viral Load test). These tests are expensive but essential for someone entering a lifetime course of treatment. At the very minimum, a Lymphocyte count needs to be done.
Comparison-shopping by PPH has shown that 3-drug ART therapy from Pune resources costs Rs.800 – Rs. 1,000 per month. In Ahmednagar the same drugs cost Rs. 1,400 – 1,800!
Of the 82 patients counselled, NONE were given prophylaxis treatment for prevention of Opportunistic Infections, and NONE were given multivitamins or information on improving general health. Prophylactic treatment is relatively inexpensive (Rs.30 or 75 cents / month) and is effective in preventing PCP pneumonia, Toxoplasmosis, and CMV. These 3 diseases are, after TB, the major killers of HIV positive people in India. Multivitamins are important to improve the general health of the HIV positive person, who often becomes malnourished and anemic, especially women
Both Physicians and their patients are dangerously uninformed about HIV / AIDS treatment issues.
The vast majority of medical practitioners and facilities of all kinds in Ahmednagar are unwilling to treat HIV positive people. Fear and misinformation abound in the medical community. In an all-too-typical response, one clinic informed us that a local Gynecologist had become HIV positive because of an accident with a needle with an HIV positive woman. This was the reason they gave for refusing to treat HIV positive people. In addition they stated that “their other patients would be afraid to use the same room or instruments.” HIV positive patients do not pose a threat, either to other patients, or to the medical personnel, as long as proper sterile procedures and Universal Safety Precautions are followed. Also, there is a prophylactic treatment course of ART which, when administered immediately after injury can prevent HIV infection. This information has not been given to the medical community. They are, themselves, the greatest source of inappropriate fear of HIV infection, which is passed on to their patients.
Two hospitals in Ahmednagar are willing to treat HIV positive people. One is Booth Hospital, a Salvation Army Hospital, which claims a caseload of over 3,000 HIV positive people from the surrounding area. The hospital has counsellors and runs a support group for positive people. They are the major treatment facility in the region. However, Booth hospital’s rates are too high for many of the rural HIV positive people. Booth hospital has the appropriate drugs for prophylactic treatment and for fungal infections, but they are relatively expensive. Doctors at this hospital are among those prescribing short-term ART treatment. There is a recent turnover among the medical staff, which may effect treatment in the future.
Those who cannot afford to pay for treatment must go to the Civil Hospital. While treatment is free, doctors are not well informed about HIV. There are no ART drugs available through the Civil Hospital at this point. Worse, there are minimal drugs available to treat Opportunistic infections. Primary treatment is simple antibiotics, which are often ineffective, and B complex shots. No treatment for fungal infections, which are very common in immune compromised patients, is available. The Civil Hospital does have a Voluntary Counselling Center, which offers advice not Counselling, and a Prevention of Parent to Child HIV Transmission Programme. This programme gives one dose of Neveripine at labour onset to the mother, and one dose of Neveripine syrup to the infant within 72 hours of birth. This treatment regimen is highly questionable. Further, women will not attend birth in the Civil Hospital unless absolutely desperate. The PPCTP Counsellor claims to have seen 60 HIV positive pregnant women in the last 3 years.
Interestingly, 14 of those counselled had received “Ayurvedic” treatments for their condition. All 14 stayed on these treatments for the entire course. Unfortunately, these remedies were prescribed by practitioners who were not properly trained as Ayurvedic physicians, and the remedies were not standardized or tested for effectiveness. Such practitioners run regular advertisements claiming that they have “Good news for HIV positive patients.” This is admittedly an improvement over previous ads, which claimed a cure for AIDS. Still, it is siphoning off valuable family resources and providing false hope with quack cures. They are appealing primarily to the men who are especially vulnerable to claims of cures. This is especially ironic, since Ayurvedic approaches DO strengthen the immune system, and Ayurvedic treatments that are properly assessed and prepared offer great hope for symptomatic relief and improvement of general health to HIV positive sufferers
198 HIV infected and affected persons consulted PPH or were contacted in other venues in 3 months Booth Hospital has 3,000 HIV positive patient contacts 30 HIV orphans are being cared for by Sneyhalya, an NGO 600 HIV positive pregnant women were seen by the Civil Hospital in the last 3 years, which reports a positivity rate of 1-2%.
ART drugs are being dangerously mis-prescribed and misused
Basic treatments for secondary infections are not available
ART drugs are severely over-priced in the Ahmednagar District
Quacks and false claims abound and desperate people easily fall prey to their lies
Counsellors are very few and have inadequate training to take on the tremendous task ahead of them
Men seeking testing and treatment are married and concealing their condition from their wives until the terminal stages Women seek help only after their husbands have died, and out of desperation. Or they are diagnosed HIV positive without counselling and through involuntary (non-consensual) testing at the Civil Hospital and other medical facilities. Women do not have the means to either support themselves and their families, or seek treatment for themselves and their children
Over 50% of those included in this survey were HIV positive
Only 2 families had both parents alive
The majority of children were living with their mothers, or were in orphanages, remand homes, or other inadequate forms of care
Nagar Taluka needs to unite at all levels – from politicians through service providers, through medical personnel to communities and families – to intensify prevention efforts and generate supportive services for HIV positive people and their families.
PRITHVI is committed to a holistic and comprehensive intervention in the HIV epidemic through its four programmes targeting the empowerment of women, the training of youth, the initiation of environmental, and agricultural initiatives and the development of comprehensive support and services for HIV affected families and communities.
Project Positive HOPE, Prithvi’s health initiative, is inaugurating the following programmes within the next 6 months:
The need for such an institute, functioning in a rural setting, is crucial at this point. It will keep families and communities united as they face the challenge of the HIV virus, provide shelter and income generation training for HIV widows and their children, promote information and training for all types of medical personnel, and provide cost-effective and appropriate treatment, education and counselling at all stages of HIV / AIDS.
© 2010 Prithvi, All Rights Reserved.
Contact: prithvi10@vsnl.com