By Nikhil Jayswal
DISCLAIMER: This article does not portray a complete picture of the state and scope of patient advocacy in India. It is my personal opinion based on my personal experiences.
When I tried to find a definition for “patient advocate” on the web, I found not one but several different definitions; each definition listing out various duties of an advocate. After reading various definitions, I’ve come to understand that a patient advocate has three major duties:
Educating a patient about his/her condition and the available treatment options
Helping a patient navigate the healthcare system and make the “right” choices
Speaking for/against policies that protect/endanger the best interest of a patient
If we think about it, doctors are best eligible to be good advocates. They understand the disease the best and they know the system the best. However, as participants of an under-funded and over-burdened healthcare system like the one that exists in India, doctors struggle to be the best advocate that they can be. India therefore desperately needs a community of advocates who can educate and help patients make well-informed decisions. Articles and papers can be found on the web advocating for the creation of patient advocate groups in India.
Patients themselves can be good advocates too. Experienced patients with a good understanding of their condition and the healthcare system can guide other patients to make the “best” choices. In my experience though, sadly, not many patients understand their condition very well. Many patients also shy away from educating and helping other patients because of the stigma associated with sickness. This is also a major reason for the lack of support groups in India.
In such a scenario, how are patients supposed to make well-informed decisions? How are we supposed to act in our best interest? There is a select group of patients though, that have that “luxury” and an entire ecosystem exists, which this group of patients can leverage to get the care that they understand is in their best interest.
Patients with strong socio-economic backgrounds have a larger plethora of treatment options at their disposal. A large number of hospitals and doctors exist that cater to this special group and provide them with all the information these patients need to make a choice. No diagnostic is inaccessible to them and their voice is heard keenly. They advocate for themselves and the system advocates for them too.
I hold no grudges against this population of patients, but the thing that prompted me to write this article is that the socio-economic background of a patient dictates his/her access to information, treatment options, and patient rights. There is virtually nobody who will advocate for you if you do not belong to a select population. This huge divide disturbs me. There are a number of reasons for this divide and it’s a complex situation. Poverty, illiteracy, lack of sufficient government expenditure on healthcare, income inequality, social divide, etc. all contribute to creating a system that is so constrained that it takes away your voice and choice unless you have a privileged background. While such scenarios may exist everywhere, the larger population of patients in India often find themselves in the dark and struggling to protect their best interest.
The consultation times in hospitals that deal with the larger population of patients are often in minutes, sometimes even less than 5 minutes. With a disease that’s as complex as inflammatory bowel disease (IBD), that is in no universe sufficient for a doctor to explain what’s happening to their body to a patient. With few informed patients, it then also becomes difficult to find a reliable peer group. IBD can also be a costly disease to manage, and many patients find themselves without insurance, or with insurers who refuse to cover patients with a pre-existing diagnosis. I was one of such patients and eventually, I went bankrupt while I was still severely ill. Government schemes target those who live below the poverty line and I was not one of them because I did not have a certificate, even though I had no money. Getting that certificate is a lengthy process and I did not have the time for that as my disease was progressing very aggressively. I felt helpless and I contemplated suicide many times because of my financial inability to get treatment. And in fact, many people do commit suicide when they find themselves in that situation. Those who are eligible for financial support from the government, often face harassment by middle-men. I can go on and on about the skewed system that basically takes away your dignity and leaves you feeling guilty about having a disease that you did nothing to contract. You don’t understand what’s happening to you. Most of the treatment options are beyond your reach and you can’t ask for help without breaking your back.
As a young adult, which is the age group where IBD is most prevalent, a lack of advocates intensifies the challenges that arise from getting diagnosed with IBD in India. As a young adult, you do not want to feel so helpless. It takes a huge mental and emotional toll on you. You feel like a burden on your family. You feel powerless against this disease. Depression and isolation intensify these feelings and life can seem pointless at times. Education and employment are hindered and you face discrimination. There is no law to protect you from that discrimination. Your self-image deteriorates. Self-harm and suicidal thoughts can occur frequently in the absence of support. Even with support, sometimes the pain is too much for some to handle, and there have been instances of suicide by young patients in the Indian IBD community because of lack of proper support.
This is why advocacy to me, seems like a luxury in India. And this is why I had to write this article. I have many friends who are struggling to get a basic treatment, and I know people who deteriorated their condition due to a lack of information and counselling. I now know many kids and teens with IBD, and I worry about their future. Without advocates to educate patients, to speak for their rights, to help them make better choices, the young adult population in India cannot be productive and fulfill their potential. India now has the second-largest IBD population after the U.S. Therefore, there is an urgent need in India for advocates who can act as a voice for patients. And I sincerely believe that the people who are lucky enough to advocate for themselves need to come together with those advocating for the lesser privileged population of patients, to create an inclusive environment where every patient gets an equal chance to fight the disease.
In a larger spirit, I want to end with some words of Claire Wineland, with whom I absolutely fell in love, after listening to her talk about her condition and her views on life. When I tried to contact her, I found out that she had died. I encourage you all to watch her on YouTube. She remains the best advocate I’ve ever come across.
“... I'm actually here to talk about how do we change the way that we treat sick people. How do we stop pitying them and we start empowering them? The way that our society works, we teach sick people that when they are sick, somehow, someway, they cannot be as happy as normal healthy people. We teach them that their happiness, their contentment in life, their joy in life is tied to how healthy they are. ...”
“... Innovation doesn’t happen because there’s some person who’s in some great circumstance and everything is going well and they get on a roll and they make something for the world. Innovation happens, art happens because of suffering. …”
“... How do we make it so that when someone is born with a chronic illness, someone who is going to be sick, who might always be sick, who might die sick, can still live a life that they are proud of? How do we teach kids who are sick, teach people who are sick in general, to not feel ashamed of their illness or their experience of life, but to learn from it and to make something from it? ...”
As an advocate, I believe that is what our fundamental duty must be. To change the way society looks at sick people. To change the way we sick people look at ourselves. Everything we do as an advocate must be aimed towards creating a space for sick people to fulfill their potential. I hope I see the day when it becomes possible for every patient to self-advocate for themselves because that will be the day when every patient is empowered and every patient is no longer a “patient”, which originally meant “one who suffers”.
Thank you for listening to me.
P.S. Some of the readers might think that I’m painting a gloomy picture of the situation in India, but this is what I have gone through and many patients go through, and I felt it was necessary to portray the situation right as it is. My goal here is to bring attention to the inequitable situation present in India, and the fact that the lesser privileged section of the patient population in India has a much greater need for advocates than the privileged section of the patient population.
P.P.S. I had initially titled this article - “Patient Advocacy in India”, and my first instinct was to just leave the article blank. Then, one day I was talking to a friend of mine. She’s a nurse and has IBD along with Asthma. I told her that I wanted to write an article about the state of advocacy in India and I asked for her thoughts on it. Her advice was - “leave it blank!”