The Philanthropy Handbook by Tej Kohli (Chapter Four - Cause Célèbre or Unmet Need?)
A Serialisation Of 'Rebuilding You: The Philanthropy Handbook' by Tej Kohli
It is tempting to suggest that embarking on philanthropy is as simple as ‘choosing’ a cause to get behind and then just getting on with it. In the early days as the entrepreneur behind a high-growth technology company, I was certainly a subscriber to the “fail fast and fail forwards” approach to getting things done.
Serendipitous Connections
It is equally tempting to subscribe to this adage for philanthropic endeavours too, and indeed this is not without merit. After all, the new and novel technologies available to philanthropists are developing very fast, so it is logical to ‘get started’ and refine your decision later on.
However, my own experience has been that the right causes have actually found me through the passage of time. There has of course been plenty of logic within the chain of serendipitous connections that have led to the causes which I have adopted: My first instinct back in 2005 was to help disabled children. This led to our Funda Kohli canteens for children, which then broadened their scope to help families in need of help to improve their prospects. Then we started funding corneal transplants because there were families whose prospects were equally and severely impeded because a family member could not access treatment to alleviate blindness.
It was growth in this activity that led to our Tej Kohli Cornea Institute in Hyderabad. And this direct experience inspired us to pursue a universal ‘affordable, accessible and scalable’ solution which led to our Applied Research division. This then precipitated our $2m donation to Harvard Medical School to develop novel new scientific and technological solutions to blindness.
This pivot into technological solutions combined with an ethos of helping children led to our #FutureBionics program to give 3D printed bionic arms to disabled children in the UK, and then when a pandemic struck, our instinct was once again to focus on feeding children and their families, which we’d started in 2005.
Riding this chain of events, by early 2021 it seemed like manifest destiny when I formed the Tej Kohli & Ruit Foundation with Dr Sanduk Ruit. At the time of writing this registered charity is making significant inroads in its mission to cure 300,000 to 500,000 of cataract blindness.
My point is that this journey is certainly not one which could have been created ‘by design’ from the outset. The trajectory that we have followed has meant that the needs have made themselves visible to me and my foundation as part of a natural progression, rather than making a unilateral decision from the beginning about exactly what my foundation will and will not do.
Look To Yourself
This process has also taught me and my team the importance of ‘getting stuff done’. The world is full (some might say too full!) of advocates, influencers, protestors and campaigners. But by definition, if you have accumulated the kind of wealth that means you can make a difference, then it is futile to deploy that wealth simply to advocate for others to deliver a solution. It is far better to become that solution, and ‘get things done’ yourself, directly at the grassroots.
So how do you decide what kind of causes that you will adopt and support, and how do you identify areas where you can indeed become part of a meaningful solution?
To begin with I would recommend looking to yourself and what is important to you as a person. For me the precepts of ‘Rebuilding You’ upon which my foundation has been built were a direct function of my desire to use my own experiences of rebuilding myself to help others to do the same. Underlying my philanthropic objectives is my deep desire to improve people’s life outcomes.
You may be tempted to align your philanthropy with more ‘fashionable’ causes which are better known and offer more opportunities for applause and attention. And if you do, you will certainly receive more invitations to fundraisers, easier publicity, more opportunities to pen thought leadership and opinion pieces for the media, and far more applause as a backer of a cause célèbre.
But my experience is that most of these prominent causes are already relatively well-funded and known about. They, quite rightly, tend to focus on life threatening illnesses that directly impact very large numbers of people, and therefore resonate with others.
I would argue however, that the projects most in need of your help will tend to exist in those ‘pockets of need’ that are not in vogue or a fashionable cause célèbre.
By definition their lack of popular awareness and support for these projects leads to a lack of funding and solutions from both the private and public sector, which causes unmet needs, treatment gaps and underserved communities. Many of these unmet needs are not widely known because they are (thankfully) unlikely to touch most people’s lives, especially in the rich West.
Yet it is these causes that offer big scope for you to make an immediate and tangible impact as a philanthropist.
Unmet Needs
Take for example Xeroderma Pigmentosum (XP), which is a rare genetic disorder that causes hypersensitivity to sunlight, as well as corneal damage which eventually causes blindness. In the United Kingdom less than 100 people are affected by XP.
Because of this it is a little-known affliction that has become easier to manage in recent years as families have used the Internet to connect and form support groups to share advice and insight. Whilst there is no doubt that life with XP is difficult in the UK, access to UV-protective clothing, sun visors, essential vitamin supplements and high factor sun cream is ubiquitous and inexpensive.
By contrast, up to one in 360 Indians suffer from XP, which is the highest incidence of anywhere in the world. The condition causes the skin to burn and take on a blistering, scaly appearance. In India this marks out sufferers as different, and they face social prejudice and are often shunned by society as a result.
Blindness is also endemic amongst those with XP as the cornea becomes damaged with exposure to the sun. Very few Indian children with XP finish their schooling because of their deteriorating eyesight. Fear around the disease is compounded by the unknown, as sufferers usually stay hidden indoors to avoid UV ray exposure.
Without treatment, half of those with the condition will contract skin cancer by the age of ten and in India their life expectancy rarely exceeds thirty years.
Making life more bearable for these children is not a big undertaking at all. Yet their plight is unknown to the world, because these children have no voice and no cheerleaders. Most do not have access to quality sun creams, sun visors, UV protective clothing or the doses of vitamin C which are vital to managing their condition.
My Tej Kohli Foundation first became introduced to the world of XP through the Tej Kohli Cornea Institute in Hyderabad. Our artificial intelligence model, which was created by Microsoft to help identify the areas with the most severe clinical need, highlighted that an increasing number of children with XP were being referred to us to receive free treatment for their deteriorating eyesight.
In almost all cases, it had taken many years for the families to obtain a diagnosis of XP, often at great cost. One family had sold everything that it owned just to be able to pay to travel to visit multiple doctors all over India in search of a diagnosis for their child.
These referrals due to deteriorating eyesight created a line of communication into this hidden XP community, and we were able to establish schemes to send regular care packages to the children, which contained everything they needed to alleviate their symptoms and to manage their condition. The scheme operates with very little data about prevalence or access, but what is certain is that it significantly improves the lives of children in India who are living with XP.
My foundation has since collaborated with renowned photographers, filmmakers and media outlets to raise the profile of India’s ‘forgotten’ XP children, and a short film – our first foray into social impact entertainment - toured film festivals throughout 2020. XP will never feature prominently in the global health dialogue, and the global media have little appetite to write about such a niche issue, but the people in need of help are very real. So, as well as making direct interventions, we are giving sufferers a voice and hoping to influence health policy.
I am labouring this ‘children with XP in India’ example because it represents a typical case of the underserved and unnoticed communities that are most in need of your help. I hope that it helps to illustrate why I would highly recommend directing your wealth into these ‘smaller’ issues, rather than into a big and famous cause célèbre.
Driving Change
Another example relates to my Tej Kohli Cornea Program, which is delivered at Massachusetts Eye and Ear by professors of Ophthalmology from Harvard Medical School. One of the things that this program has done is to provide seed funding for new research to explore eliminating corneal pain.
On the surface, this might seem a rather vanilla cause to support. But a treatment to eliminate corneal pain remains one of the biggest unmet needs in Ophthalmology. And someone needs to change this.
So one of the research projects of the Tej Kohli Cornea Program is using novel drugs released by contact lenses to treat ocular surface pain without opioids. Currently there are no FDA-approved products that eliminate corneal pain, and as a result, patients are commonly prescribed oral opioids to treat post-operative corneal pain.
A platform technology based on contact lenses that provides a slow release of compounds has already been developed for other applications, and specialized ‘SPM’ have already been shown to actively resolve inflammation in a variety of acute and chronic inflammatory diseases. However, these technologies are yet to be combined to create a treatment for corneal pain. Therefore, the goal of the research project is to perform vitro studies to identify an SPM to treat eye pain, and to then incorporate that SPM into the drug-eluting contact lenses.
This project represents a combination of existing tried-and-tested technologies for a new application that could have a huge impact. and is thus an easy ‘win’ that simply needed some seed funding to become a reality. If successful, this project will contribute toward the elimination of needless suffering amongst tens of thousands of people in relation to corneal blindness as it exists within poor communities. The cost of this seed funding is low, but the global impact could be immense.
My core point here, which by now I am labouring, is that there are a lot of causes that sit very far outside of most people’s typical experience of the world. But this should be precisely what defines them as worthy of your attention and funding as a philanthropist.
Many of these causes are severely and immediately in need of benefactors because by definition, they are not currently being served by the private or public sector.
Get To The Grassroots
So how can you identify the areas that are most in need of your support when, by definition, they are poorly known, little understood, and often outside of most people’s life experience and therefore beyond their immediate vision and understanding?
I believe that you must synthesise the same chain reaction of events that I experienced as a philanthropist.
And the best way to achieve this is to circumvent formal institutions and charities and find ways to connect directly with individuals who are on the ‘front line’ or operating at the ‘grassroots’ level.
Whether it be medical professionals, community workers or volunteers, in my experience those at the grassroots are consistently well equipped to provide the unvarnished truth about an unmet need, as well as insightful guidance about how best to tackle or improve it, as well as what works and what does not.
I therefore recommend that your approach to fact finding and learning should be ‘bottoms up’, rather than merely theorising a solution and then testing its value and viability using a ‘top down’ approach.
It was through this ‘bottoms up’ approach that my foundation developed its emergency response to the 2020 Coronavirus pandemic in the United Kingdom. In our haste to contribute to the emerging crisis, the initial temptation was to simply give money. But instead, we reached out directly to some of the food banks in our local area. One of those food banks spoke of the local leader of a branch of The Salvation Army who was doing excellent work feeding her local community, and my foundation arranged to meet with her to find out more.
She was able to give us extensive insight about the growing incidence of ‘holiday hunger’ amongst children, which was being made even more pervasive by the pandemic lockdown. She was also able to provide us with the direct insight from volunteers and schoolteachers about how they could optimise their provision to combat hunger amongst local children. And directly from this feedback my foundation formulated its ‘YouCube’ concept, which it then offered to other community groups for feedback. Within just a few weeks, over 600 families were being fed by YouCube every week in partnership with a variety of local community groups.
My advice therefore is to seek out learning experiences that enable you to understand what the unmet needs are within the communities that most need your help. Do not assume that these needs will be easily visible. You must get out into the world and discover grassroots communities that need your help and speak to those people on the front line who are doing their best to solve the problem, often without adequate resources. And you will find that rather than working hard to find the right causes to support, the right causes will start to find you.