Initiative

A Crusade against Cancer

From a capital of Rs 500 in the 1970s, to now holding nationwide campaigns, the Cancer Patients Aid Association (CPAA) is a beacon of hope for cancer patients, says Nayantara Som

There are an estimated 2.5 million cases of cancer in India at any given time. Nearly 8,00,000 cases were diagnosed and there were 5,50,000 deaths due to cancer in 2000. Most dishearteningly, many of these cancers can either be prevented altogether or treated effectively if detected early. Worse yet, more than 70 per cent of all cancers in India are diagnosed when the disease is so advanced that treatment is much less effective. In India, the estimated number of new cancer cases per year is about seven lakh and over 3.5 lakh people die of cancer each year. Against this background, Mumbai-based NGO, CPAA is a beacon of hope, for it not merely spreads awareness about the disease, initiating steps for patients fighting the early stages, but also provides complete assistance to patients.

Seeds of Care

"Around 5,000 patients receive aid of some form from CPAA per month" - YK Sapru Chairman and CEO Cancer Patients Aid Association (CPAA), Mumbai

CPAA, registered in January 1970, became active in the middle of 1968, when three-year-old Jaya Jhabbar came to Tata Memorial Hospital, Mumbai, suffering from leukaemia. Despite a good prognosis, her relatives could not afford her treatment.
"We collected money for her chemotherapy and worked very hard to meet all her needs. Finally, she was completely cured. Many years after the organisation had grown, we invited Jaya to light the lamp to begin all our functions. She is still alive and is happily married with grown-up children," recalls YK Sapru, Chairman and CEO, CPAA. Jaya inspired the birth of CPAA to assist those battling cancer but succumbing from lack of financial resources.

'Total Management of the Cancer Patient and the Disease' is the main objective of the organisation, right since inception. "When CPAA was formed, we observed that in cancer management, the focus of the medical profession was totally on malignancy or tumour. But of the problems faced by a cancer patient, tumour constituted perhaps just 40 per cent. Along with the treatment, the patient and his family needed counselling on how to handle the situation, where to go, how to start, what was the best course of action from various advices being given to the patient and his family," informs Sapru. Since the treatment was a long-drawn process, there was a huge sum of money involved and sometimes it even demanded total uprooting of the family if they were from smaller towns where treatment facilities were inadequate. The need was for counselling, money, accommodation, transportation, employment while the treatment was on, and education for dependent children. CPAA took the responsibility of holistic assistance to cancer patients.

CPAA also felt that it should address factors that cause most lifestyle-related cancers in India. Since tobacco was responsible for 40-50 per cent of head and neck cancers in India, while cervical cancer was the second largest cancer in women because of early marriages/early and multiple pregnancies, CPAA felt an urgent need to educate the Indian populace. The other objective was to work towards getting cancer detected early to increase chances of a complete cure. CPAA's final goal was to make cancer treatment affordable for everyone.

Gaining Support

The rehabilitation centres of CPAA sees to it that all its patients and their relatives are financially sound

CPAA faced a couple of monetary hiccups. "In the beginning, we had capital of just Rs 500, a second-hand typewriter, a small room as an office, and a 16-year-old girl working as a counsellor. But by the time we registered as a public trust we had acquired a small office in India House opposite GPO," recalls Sapru. There was an urgent need to establish credibility to woo hearts. He adds, "People have a lot of money to donate but only after making sure that it will not be misused. This challenge we overcame by first becoming totally transparent in all our functioning. Anyone who donated money to us was invited to come and see from close quarters how it was being utilised."

The organisation raises funds for treatment through patient related activities. The major fundraising programmes include National Cancer Rose Day, when the entire country gets involved, coin boxes all over the country, collection at mills/corporates on salary day, and adopt-a-cancer-patient scheme. In addition, Khazana programmes in collaboration with ghazal singer Pankaj Udhas are held in India and the US. Plus, there are visits to the centres by opinion makers and celebrities on a continuous basis, which results in big donations through word-of-mouth, while the website www.cpaaindia.org also brings funds.

Initially, CPAA had a few members in Mumbai, such as Rekha Sapru, Siloo Jasdenwalla, Sudha Mulla, Dr Niranjan Patel and Sapru's close friends, office colleagues and relatives. Within months, a large number of well-known personalities joined them, including Nana Chudasama, BG Deshmukh, the then special assistant to Maharashtra Chief Minister VP Naik, Abbas Jasdenwalla, Khushwant Singh, the late Rajender Jain, Shobha De and Mohini Bhullar from the India Today Group.

But the reaction of the medical (oncological) fraternity towards CPAA was hostile. "They felt we encroached on their domain and the institutions treating cancer patients felt that our very existence was a pointer to their inadequacy and failure in managing a problem which was totally their responsibility," Sapru explains. Threats were issued to either close down or merge with a larger institution.

Eminent Help

Recalls Dr Y K Sapru, “Indira Gandhi was a great supporter of CPAA. When we gave a presentation in her office in Delhi on what we were doing and what we planned to do in cancer management, she not only agreed to become our chief patron, but also from her personal bank account (not the PMO's office) gave a cheque of Rs 5,000, which in 1969 was a substantial amount” Long after becoming the chief patron she kept in touch with CPAA and put in donations from her office. Her principal secretary then, PN Haksar constantly was in touch with CPAA to keep her informed of their activities. “Many years later, Rajiv Gandhi too invited us to Delhi to meet us and to know about our activities. BG Deshmukh was another person actively associated with our society for the last 37 years. When he was in Delhi, he helped us open a branch there. From President Zail Singh to Aishwarya Rai to Ambanis many personalities visited our centre and helped us,” adds Sapru.

Decentralised Activity

CPAA works in a decentralised fashion. It has several activity centres each headed by a leader, who is responsible for achievement of goals in relation to the activity under him or her and also for maintaining the financial discipline of the centre. Some of the activity centres are: Awareness and Education Centre; Early Diagnosis Centre; Patient Care Centre; Cancer Insurance Centre; Rehabilitation Centre and Advocacy Centre For Tobacco Control and Affordable Cancer Drugs. All CPAA employees and volunteers function under one or the other.

CPAA currently operates from several centres in Mumbai. This includes the registered office and fundraising units, diagnostic centres for routine check-ups for healthy individuals and a fully-equipped diagnostic centre with mammography, X-Ray, blood testing, pap smear checking in addition to the rehabilitation centres and the Total Management Centre. "We also have full-fledged branches in Delhi, Pune and Bangalore and representative offices in over 30 towns plus a sister organisation in Manhattan in New York," adds Sapru.

Currently, the activity centres are busy working on meeting annual targets. The awareness units conduct lectures in schools/colleges/corporations, educating as many people as they can about cancer and lifestyles which can result in development of cancer. Audio-visuals and celebrity endorsement are extensively used for greater effect. The diagnostic unit holds one camp every day of the year. The saving of lives is to the tune of 0.3 per cent in healthy individuals and three per cent in high-risk individuals, the rate at which cancer is detected in CPAA check-ups.

Says Anita Peter, Director, CPAA, "Initially, CPAA focussed on financial help, counselling and patient care, but now the focus has shifted to total management of cancer. For example, we currently give our patients a cancer insurance policy in alliance with New India Assurance." The organisation also focuses on providing awareness to corporates by diagnosing cancer patients. The third facet to this total cancer management are screening camps, using a brigade of 85 registered doctors who go to the doorsteps of patients and conduct regular check-ups. Special check-up camps for women are also held where the focus is on cervical and breast cancers.

The rehabilitation centres run by the organisation have become shelters for all patients from outside Mumbai, whose treatment demands a prolonged stay in the city. The patients and families accommodated in these centres are purposefully involved in activities like stitching, making cards and diyas etc.

"In patient care, around 5,000 patients receive aid of some form from CPAA per month. In the rehab centre, at any point of time, around 200 families are being rehabilitated. Workload and quality of products is given special attention," says Sapru. The rehabilitation centres of CPAA have a year-round contract with clients like the Taj Group of Hotels and many corporate houses.

CPAA is also actively involved in the fight against the skyrocketing prices of cancer drugs with pharma corporates to make cancer treatment affordable. CPAA has a Tobacco Control Programme supported by Bollywood stars and collaborates with O&M advertising agency for educational campaigns on both cancer awareness and activities on a routine basis throughout the year. Many of these campaigns have won international awards for both O&M and CPAA.

Spreading the Word

There is no full stop to CPAA's activities. The immediate plan for the future is to create a 100-bed hospital for 100 families suffering from cancer where all needs will be met of cancer patients and their families except treatment, which will be done at a regular hospital. It will not be a dharamshala nor a hospice for the terminally ill but a lying-in hospital.

"We are also in the process of publishing literature on breast, oral and cervical cancer in local languages like Marathi, Bengali and Hindi to increase awareness among the masses," informs Dr Shubha Maudgal, Executive Director, CPAA. A booklet named Sahayata is also in the offing to provide information on accommodation, places to get blood and oxygen cylinders, prosthesis, transportation, wigs for chemotherapy and so on, as well as a booklet especially for children suffering from cancer to give them information about the disease.

CPAA is also about to start a bone marrow registry in India. "Bone marrow transplants are done in India only if there is a sibling-matched donor. There is no way of getting an unrelated donor as it is very hard to find a match. However, by referring to this registry, people will be able to find one," explains Dr Maudgal. Starting a support group for patients as well as their parents is also on the agenda of CPAA. These support groups will help them to share their treatment related experiences and provide the much-required psychological support. CPAA participated in this ye ar's marathon with support from AV Birla Group and raised more than Rs 20 lakh for the dharamshala.

Where will CPAA stand five years from now? Sapru replies confidently, "We would want to duplicate what we have in Mumbai in at least four metro towns of India."

nayantara.som@expressindia.com