Since the founding of Jan Swasthya Sahyog, we at JSS have been dedicated to promoting the health and ensuring the rights of the people of rural Chhattisgarh. Too often the rural poor are caught in a web of structural violence that includes extreme poverty, poor education, and exasperated illness.For the past fifteen years, we have been working to raise awareness of the severe injustices that our patients face and to promote system change at the state and national level. Creating widespread change is no easy task. Yet JSS stands by the belief that doctors are natural attorneys to the poor, and therefore that it is our duty to not only care for the individual lives in front of us, but to fight for the better health and wellbeing of present and future communities of human beings.JSS has repeatedly sought to intervene and influence policy and practices related to issues of primary health care of the rural poor. Our main areas of advocacy have been around:
[bg_faq_start]Drug pricing and procurement
The availability and accessibility of essential medicines in rural India is an ongoing problem. A staggering 83% of healthcare related expenditure is borne out-of-pocket, most often by the poor. Such costs can be devastating to those with financial insecurity, with illness being the second cause of families to fall into poverty (after natural disasters). To address this issue, we have collaborated with various organizations in India to increase the number of drugs on the essential medicine list, bring down the cost of such life-saving drugs, and promote the accessibility of generic medicines in public health facilities. Under the pressure of organizations like JSS, the WHO has increased the list of essential medicines from 75 to 348. However, many of these drugs remain outside of price control, with profit margins of certain drugs as high as 1000%. In 2003, Jan Swasthya Sahyog joined with LoCost, All India Drug Action Network (AIDAN), and MFC to file a petition under the Supreme Court, demanding that all essential drugs be brought under price control. We also partnered with LoCost to document our arguments in the form of a book,
Impoverishing the Poor: Pharmaceuticals and Drug Pricing in India. The fight for price control and drug regulation has gone on for over a decade, as JSS continues to demand the right to affordable medicine.
Diagnostic and treatment for tuberculosis patients
JSS has been at the forefront of those advocating for better diagnosis and treatment methods for tuberculosis patients:1) DiagnosisDrug resistant tuberculosis is a major problem due to its risk of transmission and poorer outcomes among patients. Diagnosis of drug-resistant tuberculosis can take up to four months, and such testing often does not take place until the standard treatment has failed. We have repeatedly advocated for the screening of drug resistant tuberculosis at the initial diagnosis, as well as for the screening of other family members.
India should screen all tuberculosis patients for drug resistant disease at diagnosis
2) TreatmentIn 1997, the revised national tuberculosis control programme (RNTCP) declared the recommended regimen for tuberculosis treatment in India to be a dose given three times weekly. Despite the lower cost and argued feasibility of treatment supervision, JSS recognized that such intermittent treatment was not only inferior to daily dosage, but the cause of increased drug resistance and relapse among patients. Using evidence from the literature and direct experience treating patients, we have pushed the government to change their treatment protocol to a daily regimen.
India should introduce daily drug treatment for tuberculosis
The Revised National Tuberculosis Control Programme in India: Time for revision of treatment regimens and rapid upscaling of DOTS-plus initiative
3) Food SupplementationTuberculosis has been described as a “social disease with medical implications”, as it disproportionately affects those poor, malnourished, and in crowded living conditions. Over the past fifteen years of seeing hundreds of tuberculosis patients, we are continuously struck by the extent of coexistence of malnutrition among TB patients. It has been shown that undernutrition not only makes one more susceptible to tuberculosis, but that such poor nutritional status increases the severity of the disease, decreases the effectiveness of treatment, and leads to poorer short and long-term outcomes.There is no doubt among those at JSS that tuberculosis patients should require nutritional supplementation. Progress has been made on the national and state levels, as states have begun to accept nutritional supplements as part of appropriate tuberculosis treatment. Implementation still requires work. The next step is to go beyond nutrition as a form of treatment and move toward increased food security as a method for prevention.
Nutritional status of adult patients with pulmonary tuberculosis in rural central India and its association with mortality
Patients with tuberculosis in rural India should receive food supplements during treatment, researchers say
Letter from Ganiyari
Antiretroviral therapy availability for HIV patients
Due to advocacy efforts, the first centre offering access to anti-retrovirals opened in the capital city of Raipur in January 2007. We have been referring patients to this centre and have already described the positive impact that access to anti-retrovirals has had on the lives of PLWHAs in previous reports. While this is a positive practice change, it is still inadequate for a single centre in a state of 133,000 sq. km and a population of 20 million, with large distances and inadequate public transport.
Food availability through the Public Distribution System (PDS)
It has been shown previously that the nutrition levels of adults and children are abysmally low due to poor food availability. The Public Distribution System (PDS) provides 35 kilograms of rice at Rs 3 per kilogram in Chhattisgarh state to all poor families. However, this is not adequate. It has been shown previously that the diets of people contain less that 20 ml of oil per day, while the necessary amount should at least be 40 ml per person per day. We had been arguing that for the PDS to provide for edible oil in addition to rice and wheat, a measure that would increase calorie intake without increasing the bulk of food. In May 2008, this demand was been met, and now each family gets one litre of edible oil @INR 60 per family (much lower than the market price) per month.
Radiotherapy and cancer treatment
JSS sees more than 450 cases of cancer every year. Due to limited capabilities at our hospital, patients with advanced metastatic cancer had to travel to Raipur for radiotherapy. Yet as Raipur was the only center with radiotherapy capabilities in the state, patients were often unable to get treatment due to the long queue of people seeking care. We have pushed the state to use allocated but unused cancer funds to develop a cancer treatment center in Bilaspur district. The state has since agreed to the center, although development has yet to take place.In addition to advocating for cancer treatment, we have also been pushing for more cancer screening, especially for rural women who often do not seek care for their health problems. As a result, many cancers common to our patient population, gynecological, cervical, and breast cancer, often go undiagnosed until it is too late. JSS decided to implement women’s health camps with the main purpose of screening for cancer. With the rampant success of our program, through which we caught malignancies in their early stages, JSS asked the state to implement their own women’s health camps. The strategy was not only to provide women with screening services, but to build trust and link them back into the public health system, through which the PHCs and CHCs could continue to provide services for these women. Chhattisgarh began running the camps, with JSS training all of the health workers involved, from surgeons to Auxiliary Nurse Midwives. Unfortunately, the state stopped after eighty camps, as the CHCs and PHCs were unable to follow through with the necessary services.
Diagnosis, treatment and control of malaria
Due to the high prevalence of malaria in the region, JSS has placed continued pressure on district and state officials to use rapid diagnostic kits, proper spraying techniques, and the use of effective chemicals (mosquitoes in the Bilaspur district have been found to be resistant to DDT). State policies now support trainings for malaria prevention, diagnosis, and management. The state has also improved the referral system for cases of severe malaria.
Leprosy treatment and control programmes
Our aggressive advocacy for reinstatement of the recently disbanded National Leprosy Eradication Programme has resulted in it being recognised as an issue that needs redressal. However, there have been no changes at the policy and the practice level.
Early childhood nutrition
The policy document for the under 6 child, recently prepared has specifically recommended opening of village level crèches for the child below 3 years of age in rural areas, in addition to the anganwadis that are existing. We had been advocating for crèches based on our service work, in order to address the problem of complementary feeding in the young child effectively.
Universal health care
The team at JSS believes strongly in the universal human right to health and has long been fighting to ensure health care for all of India. In 2009-2010, Dr. Yogesh Jain served on the high level expert group of the planning commission for universal coverage, and several other JSS members were also involved as leaders of sub groups within the planning commission. While India remains without universal coverage, those at JSS continue to take the stance that states are responsible for the health of their people and should at least provide primary care for all, regardless of a patient’s ability to pay.
Access to sterilization services for Particularly Vulnerable tribal groups (PVTGs)
The availability and accessibility to safe family planning methods in tribal areas remained a great challenge. The 1979 order, issued by the Public Health and Family Welfare Department of Madhya Pradesh (then including Chhattisgarh) places restrictions on the availability of permanent mode of family planning to PVTGs. This type of restrictions has negative impact on the health and economic status of the family.
At present, as per an amendment made to the 1979 order in May 2017, people from the PVTG community are required to seek permission in writing, by making an application to the sub-divisional magistrate, to get a ‘clearance letter’, and only then are allowed to undergo sterilization.
In February 2017, ten members from the Baiga (one of the tribe from PVTGs) community filed public interest litigation along with other concerned organizations in Chhattisgarh high court, demanding access to sterilization services for the PVTG community, hoping that court may quash the order and enable people from PVTG community to freely decide their own mode of family planning.
