The trailblazing ‘distributed care’ model to treat and tackle cancer is well on its way to taking solid effect in Assam
R ajmoti Nayak* came to know the crab had its claws inside her after a routine clinical examination. Her symptoms suggested it was breast cancer and that was the beginning of an agonising journey — real and surreal at the same time — the 35-year-old mother of three was forced on to get her health and her life back in order.
From the initial checkup to consultation to testing to getting her subsidy entitlement to hospital admission to surgery to follow-up treatment, Ms Nayak has come through the cancer-survival grind. Given her circumstances — Ms Nayak is the wife of a menially paid daily wage worker — it is something approximating a miracle that she has come this far and fared so well in her battle to beat back the disease that takes no prisoners.
Helping Ms Nayak and her family, who live in Lahdoigarh in Assam’s Jorhat district, navigate the cancer threat along every step of the way has been the Assam Cancer Care Foundation (ACCF), a collaboration between the Assam government and the Tata Trusts.
Established in 2017, ACCF is a partnership out of the ordinary, as are its trailblazing framework and its objectives. The Foundation is striving to create a network of patient-centric institutions that deliver high-quality, standardised and affordable care as close to the homes of cancer sufferers as possible. It will take all of that and more to tackle the complex calculus of cancer in Assam.
The ‘distributed model of cancer care’, as it is known, has four pillars: enhanced access; affordable treatment; uniformly high quality of care; and awareness, early detection and palliative care. The larger goal is to improve cancer care outcomes in Assam and the entire Northeastern region.
The tools for the task ACCF has set itself are state-of-the-art hospitals and diagnostic facilities, cutting-edge equipment and a unified technology platform. These are being supplemented by extensive community outreach programmes that spread the light on cancer as well as other noncommunicable diseases.
Enhanced access is the most critical component in the distributed care model. The majority of people hit by cancer in India are hobbled by the distances they have to travel to get necessary treatment. The four-level ACCF archetype is designed to ease that difficulty.
At level 1 are apex centres, institutions that have an array of oncology services, from radiation to surgical and nuclear medicine, as well as allied facilities such as high-end labs and research resources. At level 2 are dedicated cancer-care units linked to government medical colleges, equipped with oncology services and related facilities. Level 3 comprises units attached to district hospitals — at Tezpur, Lakhimpur, Jorhat, Tarhan and Kokrajhar — with day-care services, including radiation, chemotherapy and diagnostics. Outreach initiatives that reach the community form the bulk at level 4.
It is estimated that nearly 90% of cases can be handled at levels 2 and 3. Patients can get a diagnosis and treatment plan without having to go too far, leaving only complex cases for level 1. A straightforward outcome here is the reduced cost for patients and their families, and an improved likelihood of receiving and continuing with treatment.
“Cancer treatment cannot be given in isolation at a super-specialty hospital,” says Rajiv Pathni, ACCF’s head of operations. “There is a continuum of care that extends from the hospital to the level 1 centre, down to the community and the home of the patient.”
Getting all the levels up to optimum capacity and ready to function in coordination is an immediate priority for ACCF. Work is underway at 10 centres across Assam, covering the first three levels, to have the distributed care model running on all cylinders by March 2022. To deal with gaps in the short term, ACCF is setting up day-care centres at multiple locations to provide chemotherapy and radiation services.
Skilled personnel are an essential requirement at all levels of the model and the net has been cast wide to bring them on board. “You can pump in money and construct beautiful hospitals and you can buy the best equipment, but where are you going to get people to run these places? That is the most crucial question,” says Dr Pathni.
The Foundation has followed two ways to overcome the people challenge. “One, sons and daughters of the soil who have been working in other parts of the country and abroad, too, want to come back and join hands with us,” says Dr Pathni. “Two, we have been working with medical colleges to offer oncology fellowships and certificate programmes to build a cadre of capable professionals.”
A nurse (right) counsels visitors who have walked in for screenings at the kiosk inside the Guwahati Medical College and Hospital
C atching the culprit early is half the battle won when it comes to cancer care and treatment. The ‘swasth Assam kiosks’ project, part of the spread of efforts by the Assam Cancer Care Foundation (ACCF) to rein in the disease in the state, is crafted to do that.
Set up at heavy-footfall areas of four medical colleges in Assam — in Guwahati, Barpeta, Tezpur and Dibrugarh — the kiosks enable ‘opportunistic screening’ and health awareness.
The target for the kiosks are family members of patients accessing the selected hospitals as well as other visitors. Getting these people to step into the centres for a general health checkup is the aim. Screenings are done for hypertension, diabetes and oral, breast and cervical cancers. Also on offer are awareness sessions on lifestyle, nutrition and other health-related subjects.
Assam has plenty of use for a novel idea such as this. Over 70% of cancer cases in the states are detected at an advanced stage and mortality rates from the disease are between 40-50%. Lack of awareness and low levels of screening are among the key reasons for the grim numbers.
Each kiosk has a doctor, nurses and support staff, and the look and feel of the place induces walk-ins. More than 4,000 people have availed of the services at the kiosks since the first of them was established in January 2020.
Another impactful ACCF initiative has been a collaboration with Amalgamated Plantations for the screening and treatment of workers at its tea gardens. The company’s 21 tea gardens in Assam employ about 85,000 people, many of them with poor health indicators (according to a preliminary survey).
The screenings have revealed a range of disorders among the tea garden workers, emanating from physical, biological, mechanical, chemical and psychosocial factors. Help is now at hand for these people.
The affordability portion in the initiative aims to ensure cashless treatment for eligible patients at all ACCF centres by tapping into central and state government schemes. Additionally, efforts are being made to secure financial support from philanthropies, nonprofits and other civil society organisations. The intent is to ensure that no cancer patient leaves treatment midway due to lack of funds.
Uniform high-quality care is a cornerstone of the distributed care endeavour and technology its backbone. The enabler here is a ‘digital nerve centre’ (DiNC) that will connect the different elements under the ACCF umbrella to a central command centre at the upcoming level 1 facility in Guwahati. DiNC will help deliver a range of services to doctors and patients at remote sites. Importantly, it will minimise the need for doctors to be physically present at any given place.
The emphasis on quality has been the spur to develop standard operating procedures for clinical and non-clinical functions. On the programme menu are surveys and regular quality checks, an expanded cancer registry for Assam, and a clinical handbook for physicians.
“We are bringing to the table standardised procedures developed at high-volume centres,” adds Dr Pathni. “Now, how do you bring this close to patients? That’s where technology comes in. We cannot reach each and every patient, so we need to co-opt community physicians and doctors at different locations. We partner with them and we train them.”
The prevention, early detection and palliative care blueprint in ACCF’s to-do schedule is targeted at reducing the case load, and the consequent burden, that inevitably falls on overstretched resources, people as much as institutions. Awareness camps at the community level on cancer prevention and screening play a role here, and so too does a localised protocol for palliative care.
ACCF’s community outreach teams have been working in 10 different locations, helping health officers and healthcare workers in screening patients for three common and easily detectable cancers, oral, breast and cervical. “This is a very, very important component of our programme,” explains Dr Pathni. “Over 70% of patients who come to us are in an advanced stage with their cancers. We want to reverse this ratio of 70:30 to 30:70.”
Assam is the centrepiece of the initiative, which is at various stages of replication in five other states of India: Maharashtra, Andhra Pradesh, Jharkhand, Odisha and Karnataka. Besides the respective state governments, a host of NGOs and other partners are involved in the project.
“Our goal is to ensure that no patient should have to travel more than three hours to reach a cancer care facility,” says Dr Pathni. The biggest advantage ACCF has in realising this goal in Assam is the state government’s support. “If you want to reach the last person in the last village, you have to work with the government.”
Dr Pathni is modest about what ACCF has achieved thus far. He is just as upbeat about the project’s prospects. “We are many miles from what is desirable, but a beginning has been made. Three-four years down the line, I expect this to become a thriving cancer-care system. The model has structural strength, government backing, the know-how, technology and people to make it viable.”
Bottom lines don’t come into the picture, insists Dr Pathni. “The only money we are talking about is what we spend, and we spend judiciously. The moral and ethical aspects of it are what count. This is a noble mission and I expect people from around the world to learn from it.”