Chittorgarh: The Origins
Text by Niya Shahdad
Photographs by Oğul Girgin
Out of the 185 school days this year, nine-year-old Daksh has been at home for almost 130 of them. His right knee — now swollen and twice the size of his left one — has not allowed him to step outside for almost three months as it continues to bleed internally, at unpredictable moments in time, for unpredictable bouts of time.
For Daksh (right), a hemophilia patient, his right knee is the most recent focal point around which the pain in his body orbits. Two years ago, it was one of his front teeth. A sudden bump into the wall while playing, or a collision with a friend as they travel over a speed bump in a tightly packed rickshaw, is all Daksh’s body requires to trigger a stream of bleeding without the capacity to stop it. Hemophilia — a mostly inherited, genetic disorder — is a condition in which the human body is unable to form blood clots; a function that is integral to stopping the bleeding each time a blood vessel breaks within it.
Daksh, who is deficient in clotting factor VIII, is amongst the rare one percent that has been diagnosed with the condition without any previous genetic history; the first in his family with Hemophilia A. In the first three years since his diagnosis, Daksh’s parents — Dimpy and Rajan — spent a total of three lakh rupees ($4,580) on the one drug that can prevent his excessive bleeding each time it begins. Known as “antihemophilic factor” — or more commonly as “factor VIII” — the injection feeds Daksh’s blood with the natural protein it is unable to produce on its own, in order to form the clots required and prevent further bleeding. For Dimpy and Rajan, their modest but steady household income from a printing business and leased flats in the city of Chittorgarh has allowed them to sustain a costly search for the injection outside of the district they live in.
“Out of approximately one hundred private medical shops in Chittorgarh, we would only find the injection in ten or so. So we had to order it from outside. Sometimes Delhi; sometimes Ahmedabad. Sometimes elsewhere,” says Rajan, speaking of a time when the couple would spend approximately seven thousand rupees ($105) on each vial.
Today, it has been almost five years since factor VIII was introduced under Rajasthan’s Free Medicine Scheme, a few months after the program’s implementation across the state, making it not only available in Drug Distribution Centers across Rajasthan’s districts but also free of cost. And Dimpy and Rajan spearheaded that particular movement.
“We went to meet the chief minister and took Daksh with us. He couldn’t even walk at the time,” shares Dimpy, adding that their meeting with the local government resulted in an immediate inclusion of the drug under the Scheme, the culmination of a long, tough fight on their part.
Daksh’s parents, Dimpy and Rajan, spearheaded the movement to introduce factor VIII, an injection for hemophilia, under Rajasthan’s Free Medicine Scheme. They recount the times when a single vial cost seven thousand rupees and express relief over the Scheme’s expanded coverage.
“It was at that meeting, from that very moment, that the injection was made free. But it took me three to four months of constantly troubling Dr. Samit Sharma to bring it to the government’s attention.”
A pioneer of the Free Medicine Scheme and the former head of the Rajasthan Medical Services Corporation (RMSC), Dr. Sharma has moved on from his post in Rajasthan, but remains the face of the Free Medicine Scheme for both Dimpy and Rajan. After months of what they described as “troubling and fighting with him”, he ensured that the couple was able to meet with the local government and put forth their plea in person.
“We realized that if we have to struggle so much to get this essential injection for our son, then what happens to the others? To the kids of the poor?” asks Dimpy.
When Dimpy speaks today, old questions still perforate her rapid speech and restless voice, evoking the sense of urgency and helplessness that haunted the early days of her fight for access to the medicine.
“Whatever injections would be sent from outside to Jaipur or Chittorgarh, would be used for my son. And I used to worry and think, what about the others? There were so many days when there were no injections available at all. And then there were days when there were just a few available, but they were used for Daksh. And there were at least ten to fifteen other patients of hemophilia in nearby areas and villages. At best, those patients would be injected with blood instead, which is often worse due to the risk of being infected by HIV. What would happen to people like them?” she questions.
“They die,” says Rajan. “They eventually die.”
Patients outside the District Drug Center (DDC) No.3 of Chittorgarh’s District Hospital on a day of unusual calmness, after days of flash floods. This hospital houses 8 DDCs, and multiple Lifeline counters where patients can obtain generic medications that are not on the Essential Drug List of over 500 items.
Chittorgarh is the site of the origins: the first district to house Rajasthan’s Free Medicine Scheme. Commonly referred to as “Chittor”, the small city spans 11 square miles – consuming only three percent of Rajasthan’s vast landscape – and hosts approximately 180,000 people. But its demographics, infrastructure, and characteristics played no role in its selection as the site of origin. Instead, Chittorgarh became the first district to implement the Free Medicine Scheme by default, as a result of being the district of its then “collector” – and creator of the scheme – Dr. Samit Sharma.
In his role as the Collector of Chittorgarh, Dr. Sharma observed – with close proximity and increasing awareness – the people’s plight as they struggled to access health care at the hands of highly priced medicines. More importantly however, he held a position from which he could implement models for change. And the first of these – a predecessor to his Free Medicine Scheme – was known as the “Generic Drug Project.”
Described by doctors as the “foundation” of the Free Medicine Scheme, the Generic Drug Project was established in 2009, two years before the larger scheme, in an effort to take the first, big step: convert all medicines prescribed under Chittorgarh’s public health care system from branded drugs to generic drugs in order to make them affordable and accessible. Dr. Sharma began the extensive process by setting up the first of many meetings with senior government doctors, in which each were requested to produce a list of medicines they prescribed, frequently and infrequently, for all the various ailments they encountered. What Dr. Sharma procured from the doctors was, to begin with, a list of 800 medicines that he eventually edited to include no more than 400 different types of medicines.
View from inside a Drug Distribution Center (DDC), first of which was opened in Chittorgarh, Rajasthan.
“He found that the basic salt of the medicine -- the generic, biochemical part of the medicine – was common among many. And so, when he eliminated different brands and names of the same medicine, he found that there were actually no more than four hundred different types,” explains Dr. Narendra Gupta, a community health physician and founder of the health charity, PRAYAS.
In his second meeting with the same set of senior government doctors, Dr. Sharma approached them with an offer that was difficult to oppose but also challenging to execute. He proposed a plan in which the government would set up shops within hospital premises, stocked with each of the 400 medicines the doctors were known to prescribe, but in the form of their generic – not branded – names. Dr. Sharma’s argument was straightforward but strong: the change, an undeniably drastic one, was called for in the name of a public that was struggling and scraping its way through a web of private shops and pharmacies to purchase medicines that were ultimately unaffordable. Dr. Sharma’s plan was to abolish the chain of supply that facilitated the overpricing of medicines in which a given set of tablets, originally priced at Rs.8.67, would eventually be sold for a hiked rate of Rs.70 to their final, most significant consumer: the patient.
While the doctors agreed to the idea of a Generic Drug Project, it was the implementation of the project that presented itself as the real battle; a process that was described, rather aptly, by a senior physician as “the big, uncomfortable transition.” The structural change that Dr. Sharma was trying to achieve in the prescription and provision of medicines relied, first and foremost, upon achieving a crucial change in the mindset of the two parties it concerned: the public and the medical community. For the public – which had grown accustomed to the idea of accessing medicine as a source of challenge and privilege rather than a fundamental right – the staggeringly low costs of generic drugs, in spite of being no different to their branded counterparts, was initially more reason for suspicion and mistrust than relief and joy.
“It was all in their minds,” shares Dr. Anil Kumar Garg, Chittorgarh’s current District Program Coordinator (DPC). And Dr. Sharma combated that very mindset through a slow, gradual process of conversion that spanned a year and a half and consisted of a series of meetings, educational workshops, and presentations. While the predominant audience for Dr. Sharma’s presentations and workshops were doctors and medical staff at large, the general public, including social workers, journalists and representatives of various religious communities, also attended in significant numbers. It was here that Dr. Sharma built a space for an emotional, human conversation – photos, documentaries, anecdotes and accounts of struggle, poverty and injustice were used to motivate the change he was trying to introduce.
“Not only was it difficult to convince the doctors to make the change, but also difficult to convince the patients to accept that change,” Dr. Madhu Bakshi continues, “because patients failed to believe that such low cost generic medicines would be effective.”
Dr. Bakshi, now the Prime Medical Officer (PMO) at the Chittorgarh District Hospital, was then one of the senior doctors working alongside Dr. Sharma during the implementation of the Generic Drug Project, and thus a regular attendee of his workshops and meetings. Dr. Bakshi recalls how the lectures and discussions Dr. Sharma hosted were a means to educate the various communities in the differences (or lack thereof) between generic and branded drugs, and address their queries regarding their respective classifications, advantages and disadvantages. More importantly however, Dr. Sharma used them to place a human face and experience before the numbers.
“It was because of the documentaries he shared with us that we all learned of how many families were unable to purchase costly, branded medicines and how many of them suffered and died due to that,” shares Dr. Bakshi.
A family of four travels 15km every week for blood transfusions and medication for their 4-year-old son with thalassemia. Chronic patients go through a constant cycle of expenses, always being on the move and in need of special care. Although the scheme covers only their post-transfusion tablets, even a small contribution eases the financial load on the family.
Perhaps one of the most indicative signs that the aversion to generic drugs was ingrained in the psyche of the public was its reaction to their initial packaging. Dr. Bakshi, like many of his colleagues, noted that in their early days, generic drugs were presented differently from the branded drugs. Often wrapped in plain aluminum foil packing rather than the more refined blister packs, the generic drugs would appear to seem “less authentic” to patients. “Slowly, over time, the packaging improved and eventually you could not tell the difference between the two,” he says.
The apprehension surrounding the packaging of generic drugs was simply one of the ways in which the deeper doubts regarding its effectiveness manifested itself. And what seems to be a clear consensus amongst most of Chittorgarh’s senior doctors today is that the process of breaking through that rooted resistance was only achieved through each individual patient’s experience of trying out a generic drug. “Patients used to come to us and insist that they be prescribed branded drugs instead. Change could not be brought about in a day, and it only started taking place one patient at a time, as they started using the generic drugs over a period of time and seeing for themselves that they benefited greatly from them,” Dr. Bakshi recalls.
Mangi says that she’s probably older than 70 and complains of pain in her lower abdominal area. Her sonogram report says she is 60, and has gross ascitis. She’s been coming to Chittorgarh District Hospital for around three years to seek treatment and the scheme covers all her medication. She says that the scheme has been the most helpful for chronic patients.
Dr. Garg, who remembers the time similarly, is confident that the public has now made the shift to the other side: “They know their rights now; they know that the government is providing them free drugs that are not compromised by any means. And they say, ‘Why should I have to buy them from the market if my government is giving them to me for free?’”
Berunath, a 65-year-old heart and diabetes patient living in rural Chittorgarh, happily asks himself that question each month. A lifelong farmer, he has been on bed rest for three years now, since he first developed his heart condition. Although only 65, Berunath’s feeble, tired body – the result of his hard labor amid sixteen long years of diabetes – belies his age, as well as spirit. Now a patient of two chronic illnesses, Berunath will be taking medicines for the rest of his life. And yet, he speaks with a smile that is oddly free of any stress or fear.
As Berunath lays out a spread of his daily medicines before him, his family – son, daughter-in-law, and three grandchildren – watch and recall earlier years when the same eight to nine different sets of pills would cost them no less than 5,000 ($76) rupees each month. The family – with Berunath as its sole breadwinner until his son came of age – could only afford to purchase the medicines in installments, using money loaned from their neighbors and relatives. The introduction of low cost generic drugs followed by free generic drugs was at first lifesaving for Berunath, and eventually life changing for him and for his family.
“Before, when we bought branded drugs, the cost of his medicines would be around 4,000-5,000 rupees each month. And now, that is how much we have spent on his health in the last three years altogether,” says his son.
Berunath has a long history of diabetes and cardiac problems, a history that predates the initiation of the Scheme. As a chronic patient who experienced the transition, he sums up the difference the Scheme made in one sentence: “My worries went away.” The money that was previously spent on Berunath’s medication, has now helped the family move into a larger house. Indeed, the support for the patient’s healing translates into support for the patient’s family.
Although life remains deeply challenging for them, the relief brought about by having to no longer pay for medicines is undeniable. “The worry of medicines has left me,” shares Berunath, noting that much of the earlier days of his ill health were preoccupied not with the worry or grief of having to take multiple medicines for the remainder of his life, but rather by the stress of not being able to obtain those medicines.
It is that fine distinction – one that may seem subtle from the outside, but has been indispensable for those on the inside – that the Free Medicine Scheme is responsible for creating in the lives of the public. And Berunath is simply one example of the type of patient that the scheme has served most beneficially: people diagnosed with a chronic disease that demands costly, consistent medication for the long term.
Today, it has been over a year since Berunath and his family moved into their second home – a humble setting consisting of only one room and a small kitchen, and bare of anything beyond the very basic commodities, but one that offers more space and a sturdier structure than their old, mud house. “It’s still very difficult,” admits the daughter-in-law, “but now my husband is earning and since we no longer have to purchase any medicines, we are able to save and use the money to improve our life a little.”
The young, working son – who continues to be amazed and relieved at the lack of difference between branded and generic drugs – now brings home a monthly salary of 5,000 rupees.
Present day Chittorgarh, now deep into the six-year-old Free Medicine Scheme, no longer holds any physical traces of the 2009 Generic Drug Project that had otherwise marked its presence through fifteen or so Generic Drug Stores spread across the district. But the project’s one time existence and success is at all times symbolized by the continued impact of the Free Medicine Scheme. As Dr. Garg explains, the Generic Drug Project was not only a stepping stone to the actual scheme but also an essential trial through which Dr. Sharma “noted the advantages, disadvantages, and challenges” of eventually prescribing and providing medicines free of cost.
In a certain sense, however, the history of the Generic Drug Project and the origins of the Free Medicine Scheme have left a visible, physical mark. Sitting right across the street from the Chittorgarh District Hospital are the largest visual symbols of their long-term impact: a line of four private pharmacies, each devoid of any customers. In the years since generic drugs were introduced to the public – first at their strikingly low prices, and eventually free of any cost – it is the privately owned pharmacies and medical shops that have suffered the greatest loss.
“It’s been at least five years since our business first suffered from a loss of 40-50 percent of our original sales,” says one owner. But what speaks louder than his admission of a failing business are the non-medical items that occupy the shelves of his pharmacy: sanitary pads, toothpaste, stationary and toiletries. “We had to stock up on these consumer goods after the Scheme was introduced and once the sales suffered, although it helps very little,” he explains.
Next door to him, inside a neighboring medical shop, its co-owner shares a similar struggle. “Very few patients from the hospital come to us. Most of our customers come from private doctors. Sometimes, if there are certain medicines that are not available in the Drug Distribution Centers within the hospital, then they will come and buy those from us,” she says.
The empty private pharmacies and medical shops across Chittorgarh make for a stark, telling contrast with the growing crowds waiting to be treated within its district hospital. Scores of men, women and children can be found – at most hours of the day – lining up outside its DDC, as the pharmacist on the other end distributes the prescribed medicines through a small window carved out of the glass wall. The process is organized but rapid: one look at the prescription, a few seconds to find the right medicine, and a few more to hand it over along with a quick reminder about its recommended dosage and any precautions.
One day in August, the Chittorgarh District Hospital housed approximately 580 patients in its structure that was originally built for 300 people, from the pharmacy to the overcrowded general wards where people poured beyond the patient beds onto the floor, sitting with their orphaned IV drip stands. The image spoke loudly and clearly: the Scheme has been effective in reaching and helping the people it was created for, but it will also require additional resources to sustain the incline in patient load it has attracted.
Daksh’s story is symbolic of both – the origins and the future – of the Free Medicine Scheme. His parents’ fight to introduce the factor VIII injection under the Scheme has eased and changed the lives of families with hemophilia patients far beyond theirs.
“Anyone else would have committed suicide,” Rajan says, referring to how less privileged families with a lower income background would not have been able to sustain or survive the struggle of paying 7,000 rupees for just one factor VIII vial.
But the fight is yet to end for Dimpy and Rajan, as Daksh’s knee enters its third week of bleeding with no signs of stopping, and they continue their search for more answers, more treatment.
“We are leaving for Bombay in a few days; we want to show him to a doctor there. He might be able to help us and diagnose why the bleeding isn’t stopping this time,” shares Dimpy.
Inscribed on a small whiteboard that sits on the wall behind them is a number, along with a name: “Narendra Modi.” The couple had recently learned of a new “factor” – one that is yet to be introduced in Rajasthan – a different, long lasting injection that remains effective in preventing bleeding for at least fifteen to twenty days. And Dimpy and Rajan have now begun their work towards introducing it under the state’s Free Medicine Scheme.
“We hope to meet the Prime Minister soon so that this injection too can be made available for free here,” Rajan says.
As Daksh excitedly shares that he dreams to become an astronaut or a pilot some day – flying mid air or in space without the worries of the swollen knee that keeps him at home – his parents hope to open all paths of possibilities for him, and others, under the working Scheme.