Interview Harmala Gupta
Interview with Harmala Gupta, cancer services and palliative care advocate
In 2013 Health Issues India interviewed Ms. Harmala Gupta, a cancer survivor and advocate for cancer services and palliative care in India. She was diagnosed with Hodgkin’s lymphoma in 1986, while studying for a Ph.D. in Montreal. She returned to New Delhi to start the first cancer support group in India called Cancer Sahyog. In 1996, she founded ‘CanSupport’ to meet the needs of cancer patients who present to a cancer centre with advanced disease.Harmala Gupta is on the governing board of the Rajiv Gandhi Cancer Institute in Delhi and is a fellow of the UICC (International Union Against Cancer) in Geneva. She is the recipient of many awards including recognition from the President of India.
A. On health in India
We have to think in terms of preventive health. I feel that we have laid too much emphasis on treatment and yet so many of our illnesses, whether they are diarrhoeas, which are pretty widespread in rural areas, or whether they are infections that require treatment, can be taken care of if we focused on good health or preventive health. This is also true for non-communicable disease which are on the rise. We know today that even an illness such as cancer has a preventive aspect to it if only people were aware and took the necessary steps. Now, for this to happen, the government has to play a huge role.
The top three health priorities today should include:
a) An all out war on water borne diseases which are the root cause of a lot of ill health in our country. Along with vaccines we need clean water, good sanitation and hygiene. The Government of India needs to play a much bigger role and make this their top priority along with a nationwide campaign to raise awareness. In China, they had a huge campaign on hygiene and sanitation and that brought down the infection rates of so many diseases and increased the health status of their citizens.
b) Malnourishment continues to plague our country and you have some appalling statistics about the number of malnourished women and children in India. We need to pay more attention to this as we can not fight illness if our immune systems are weak due to lack of a proper diet.
c) We also need to urgently prepare ourselves for an ageing population and for dealing with chronic illnesses and life-limiting diseases and conditions which are now threatening us. With longevity on the increase, our health system will have to deal with a host of medical issues. These can include multiple organ failures as well as neurological illnesses such as dementia and Alzheimer’s. We have currently nothing in place for these illnesses in the public health system. We are trying to improve health and extend lives and yet when people reach old age we have no facilities in place to ensure their continued good health and quality of life. Palliative care for good symptom control and emotional support is the need of the hour as is access to opioids like oral morphine for good pain control.
There have been some good initiatives in health. The pulse polio programme has been a success. Our increased longevity is also testimony to the fact that we are winning the war against diseases that used to take people in the prime of their lives. The campaign against smoking and tobacco use is also a commendable initiative which has the potential of saving many lives.
I am concerned about the fact that TB continues to be a major threat to us; we now have multi resistant strains. This is not something we can be proud of as we have been battling this disease for some time now and we have not been very successful in doing so. There is also the sad fact that we still have so many undernourished children in this country. This is a matter of shame. Malnourishment is something that should have been wiped out long ago.
What also makes me very uneasy is how the whole health system is being privatised and that the public private partnerships seem to benefit the private players more at the expense of the ordinary public. The government has not invested enough in setting up facilities in the public sphere and now there is overcrowding in our hospitals. On the flip side, when you look at the doctors who work in these hospitals, they are extremely dedicated and experienced and are willing to serve those who have are less privileged and have nowhere else to go. This is commendable. In busy hospitals, such as AIIMS and Safdarjung, we have doctors who often skip their meals because they have so many patients to see. The tragedy is that they do not have good working conditions or adequate back up and support. Good medical care is ultimately a team effort. No doctor, no matter how talented, can do it alone.
On the other hand, we have 5 star hotel type private hospitals that are beyond the reach of most people in this country. In these institutions too we have failed to build a team approach to taking care of a patient. Sometimes I feel this is because we worship doctors in our country and they in turn are not willing to come off their pedestals and share their charisma with others. From a practical point of view if nothing else, it is very important for them to do so because they cannot cope with the large numbers of patients that they see and consequently do injustice to them. I have patients tell me that even in private hospitals they have to wait for a long time to see a doctor and even when they do so the doctor does not give them enough time and seems distracted.
The lack of trust in medical institutions and practitioners is also another issue that is coming up these days. People are not very confident if the services provided in private hospitals, clinics and nursing homes and the advice they get is really aimed at their well being. They feel that it is personal gain and commercial interests and lobbies that are driving medicine today and this is an apprehension shared by many doctors as well. To give an example: I have heard an oncologist say that he had someone come to see him who thought he had cancer. When asked as to how he came to that conclusion, he said he had been advised to take a PET scan as a preventive check and later was told that something had showed up that “could be cancer”. In order to recover the costs of such expensive machines and technologies, people are being misled. It is sad to see a general slippage of ethics and professional standards in the medical field.
China, as I mentioned previously, have handled their hygiene and sanitation problems very well. They even launched a programme to stop people from spitting in public. This is certainly something that we should emulate. Brazil and Sri Lanka too have done a commendable job in providing basic health care services to their citizens at affordable rates. About a year ago, I was in Mexico City and I was very impressed with the fact that Mexicans have universal health coverage and that their basic health needs are taken care of. There are many more recent models in Europe, such as in the Basque country in Spain, that have affordable and accessible medical facilities for the entire population. These economies have realised that education and health are really the pillars on which a society that wants to grow and prosper stands.
Governments should see health not as a cost but as an investment. You are investing in the future of your citizens and in the progress of your country. I fear that in India we do not see it this way as yet. We are following the American model that is driven by commercial interests and just does not work for a vast majority of their citizens who like us can not afford to fall ill. They have higher maternal mortality rates than a developing country like Bangladesh. Instead, we should follow the European model. They had universal health coverage right from the beginning and invested in health even when they were not rich and it has paid them dividends. It is what allowed them to develop, build a middle class in those countries and helped their economies grow.
The Chinese went through a rocky patch when they privatised health care and then realized the folly of what they had done as there were no proper or affordable health services for the majority of their people, especially those living in rural areas. Now they are trying to remedy that by investing more in public health services across the country.
They would have wished:
a) That we had invested in a system of universal health coverage that would make healthcare affordable for all;
b) That we would have laid greater stress on tackling non-communicable diseases through education and prevention to avoid high incidence rates;
c) That we had looked ahead and realised that we would have an ageing population and should have created facilities for their ongoing care and well being rather than burdening the family;
d) That we had ensured that health education and basic facilities were available from the village level upwards so that people are not forced to leave their homes, travel long distances for treatment and spend a lot of money living in cities like Delhi to get medical help;
e) That we had invested in hospice and palliative care services to enable people to continue to live with dignity and their caregivers to cope with the stresses of chronic long term care giving.
One trend that is having a huge impact on health is that currently we have a powerful pharmaceutical lobby as well as institutional donors from abroad who seem to be dictating our health priorities. This has led to a lack of fit between what we need and what we get. To cite an example.
Under the National Cancer Control Programme, the bulk of funding goes for setting up state of the art treatment facilities and for buying expensive drugs rather than for prevention and palliative care. This despite the fact that 80% of the cancer population in this country comes with late stage disease. For the first time, our government is including palliative care in the 12th Five Year Plan. However, no separate budgetary provision has still been made for it. Drugs like oral morphine, so essential for good pain control, are also still not widely accessible.
The degradation of the environment too is having a negative impact on overall health. Besides poor rural and urban planning, powerful lobbies are playing a role here as well. In the name of development, our soil and water is being polluted with noxious chemicals as is the air we breathe. Growing disparities are also responsible for promoting private transport over public transport in our cities which is impacting on our health.
We also need to realize that Indian society is changing. There are more and more nuclear families and, thanks to increasing migration to cities and overseas, old parents are being left to fend for themselves both in rural and urban areas. You cannot legislate children to look after their parents as they are doing in China. Instead there is a need to provide sheltered housing for the elderly and adequate medical and nursing facilities.
I feel that we are a little too taken in by technology and by the latest gadgets. This is not where our focus should be. We should concentrate instead on providing standard basic care, which need not be either expensive or high tech.
So, I am not in favour of investing in more and more expensive and state of the art technologies. My fear is that this will only lead to an avoidable spiraling of medical costs and more unnecessary tests being prescribed due to the pressure of having to recover expenses.
To give an example, a mammogram works well for detecting tumours in women above 50 years of age but not for younger women as they have denser breast tissue. But in India, younger women are being told to get mammograms done despite the fact that we know that for them a cheaper and safer (radiation free) technology like an ultra sound will work better. Considering the fact that a majority of women in India with breast cancer are below 50 this is more appropriate for our needs.
To cite a personal example, I remember when I had radiotherapy about 20 years ago for my cancer, the machine had cobalt as a source of radiation and it did the job perfectly. Now you have the linear accelerator, which is a very expensive machine and is appropriate for some cancers but not all, being used indiscriminately to treat all cancers. This places an unbearable financial burden on patients who could be offered cheaper and no less effective radiotherapy from a cobalt machine.
Therefore, in choosing technology, you have to go with something that has relevance for your population and its needs and not be mesmerised by the latest machine or gadget that comes from the West. This is true for medications as well.
Those of us who work in palliative care know that a simple morphine tablet works wonders for patients in pain. It is something that most can afford to buy and yet the pharmaceutical companies by and large do not want to invest in these tablets. They would rather invest in trans-dermal patches and in longer lasting formulations which can be marketed at a higher price. Sure, you can offer these expensive technologies and medications to those who can afford to pay for them but what about the rest? Why should people not have choices. I have no doubt that there are many who would not mind swallowing a pill every four hours if it suits their budget.
I believe it is people and processes rather than technology which are going to make a difference to health outcomes in India. We need leaders with the right orientation and vision and we need to build institutions and processes that are credible and professional and subject to monitoring and supervision. We have to start seeing society as a whole and not separating the rich from the poor. If we do not do this, we shall have sub-standard care for all for islands of excellence can not sustain themselves over time if the environment they live in is not a conducive one.
We need a massive education and awareness programme for all non-communicable diseases. This should target every age group and different strata of society. People do not have enough information about a healthy and balanced diet, about vaccinations, the need for regular exercise, check ups, etc. This is an area where joint ventures between the government and the private and not for profit sectors can have a positive impact.
The use of tobacco in any form must be discouraged, especially among the young. We need role models who young people admire to take this on as a challenge. It is also about correct communication and effective advertising. Proper pricing of tobacco products can play a role here. Chewing paan with tobacco and smoking the hukka is also a cultural issue. If the young begin to shun these practices this will have a positive effect too.
We need to emphasise the need for exercise. This is where urban planning is important. More pedestrian pathways and cycling lanes to promote outdoor exercise is the need of the hour. Regular exercise that is enjoyable promotes good health and keeps a number of non-communicable diseases like cancer and diabetes at bay.
When I was first diagnosed with cancer, my doctor asked me what I knew about cancer. I replied, “Well, it kills you, doesn’t it?” When he told me I had a cancer of the lymphatic system, I asked “What is the lymphatic system?” Needless to say my doctor was horrified at my ignorance on both counts.
Our knowledge about health and about our bodies is abysmal. This is something that must change. Health education at the school level is so important for this. It should be taught as part of the curriculum.
The second thing is that we should be more self aware and know our family medical histories better. We are our own first defense. No one can know our bodies better than ourselves. However this will only happen if we educate ourselves, are self aware and understand what is normal for us and what is not. We must take responsibility and understand that the choices we make can impact our health. For example, if you start to use tobacco when you are young, it is going to catch up with you at some point in the future. On the other hand, if you start eating healthy now and exercising, it is something that is going to hold you in good stead for the rest of your life.
We also need a strong consumer movement. People are not aware of their rights and culturally they feel they cannot question those treating them. In this day and age, we need to become our own health advocates and should know what questions to ask our doctors and caretakers. Non-profit organizations can play a role here and should be encouraged to do so.
B. About your work
I started CanSupport in 1996. It grew out of my personal experience as a cancer survivor and cancer support person. The mission is to provide information and appropriate support services to cancer patients and their families.
CanSupport has pioneered palliative care in north India. It runs a very successful Home Care programme for cancer patients living in Delhi and the NCR. There are complementary Day Care, counselling and telephone helpline services as well. As the focus is on the less privileged all our services are provided free of charge. CanSupport also runs training programmes in Palliative Care for doctors, nurses and counsellors. We are now poised to take our training programme to other states in India as well and help them set up similar palliative care services.
Presently, CanSupport provides palliative care at home to more than 1,000 people affected by cancer at any one time. It has 15 roving teams of doctors, nurses and counsellors trained in palliative care who bring high quality care to the doorstep of patients living in New Delhi and its adjoining areas. Those under care of the home care teams have access to the home care team at all times. Besides this we also have a helpline which patients and their families can use. Those who need it receive subsidised medicines, equipment and even food supplies.
CanSupport is filling a huge gap in our health care services. Presently, even our regional cancer centres do not have a palliative care unit or trained staff. We are offering a lease of life to those who would otherwise be left to fend for themselves and would die in extreme pain and agony leaving behind bereft and distraught families. Not only do our home care teams bring comfort and compassion but they also help people to live until they die, surrounded by their life’s memories and supported by their loved ones. This is in stark contrast to how people now die in hospitals: in ICUs where they are strapped to machines and life prolonging devices that isolate them and rob them of all dignity. It excites me that what we are doing is helping people to find meaning and get closure at the end of their lives. We are also supporting families so that they can face the future without regrets knowing that what they did was in the best interest of their loved one.
I have been working for more than 20 years in this field and have faced a number of challenges during this period.
I remember, for example, discovering when I returned from Canada where I was studying and had been diagnosed and treated for my cancer that cancer was a taboo word in India. There were also so many misconceptions about it. Cancer survivors did not want to be identified publicly as they thought that this would lead to discrimination against them. They also did not want to arouse pity or morbid curiosity. I think this has changed overtime not the least because of the rising incidence of cancer. Today, almost everyone knows someone who has or has had cancer.
The other challenge we have faced has been on an organisational level. I have been saddened by the cut throat competitiveness displayed by NGOS and professionals working in the same field. For some reason we find it difficult to work collaboratively keeping in mind the larger common goal.
The biggest challenge however that remains I feel is making our fellow citizens more health aware so that they go for regular check ups and do not live in denial. We must realize that the state of our health lies in our own hands and that the decisions we make can either help or hinder us. At some level there is a kind of fatalism that prevails which prevents us from taking necessary and timely action. We must educate and inform.
There have been many great moments for CanSupport. A few highlights:
When we received our license for oral morphine after a long battle;
When we worked on our first Five Year Plan and dared to think big;
When our beneficiaries began to refer patients to us;
When I handed over my duties as CEO to a worthy successor last April.
- The fact that the Ministry of Health now recognises the importance of palliative care and that we are likely to soon have a national policy for palliative care is also very heartening. We are also on the verge of a very significant breakthrough as the NDPS (Narcotic Drugs & Psychotropic Substances) Act has been suitably amended to make oral morphine for pain control more accessible in every state of India. The Amended Bill is now waiting to be passed in Parliament.
On a personal note, working in this field has really helped me build harmony and balance within myself. I have met a number of dedicated and inspirational people who have inspired me with their courage and acceptance of whatever life brings. I am now more mindful than ever of the universal force that governs us and which is loving and kind. Life takes on a different meaning when you work in this field and it definitely helps you put your own life in perspective. As we say in CanSupport, “Our patients are our teachers”.
That I have a rich inner life full of meaning, beauty and mystery which sustains me and inspires me. I feel blessed.
I enjoy travelling and reading and writing. I also enjoy the company of well meaning people.