Today, I saw an article about a celebrity known as Cheryl who was sharing news about Charcot-Marot-Tooth (CMT) disease, one which is currently incurable and dangerous to her 3.6 million followers. The response was overwhelming as responses poured in and I thought to myself, the power of celebrities have been hard at work for various causes, and yet, why are there still so many movements which do not translate to radical cures for a particular disease? Do not get me wrong, I highly support people sharing news and driving change, the question that got me pondering is why has little lasting change been created as a result of these movements?
The influence and network of health knowledge
That got me thinking, and I attempt to pen my thoughts here. Take note that these thoughts are just my own opinions and do not represent truths. It is a first step for the community to ponder about these as well. Why has there been little cures for decades for the various chronic conditions and incurable diseases despite hundreds of billions spent every year for some disease? Shouldn’t the spillovers result in a true cures?
Power is concentrated in the pharmaceutical companies, and trying to drive change is hard
The big pharmaceutical companies spend billions every year to hire the best salespeople and researchers, forge relationships with hospitals and clinics, distribute their drugs to all corners of the world, but how long has it been since an innovative medicine was found? I question the direction we are taking in terms of medication. Is a novel (by novel I mean not just out in the market, but also truly novel in helping patients) product (be it drugs or medical devices) selling in the market because it can truly benefit the patients or because it generates profits? What is the equilibrium and are they fairly valued?
Patients are not stupid, but the fear might potentially hinder their ability to question, leaving their fates in the hand of agents
In Economics, we learn of a very important theory, known as the principal agent problem. Patients are the principal and doctors and physicians are the agents. For the patients to truly benefit, we have to trust that the agents truly care for us and will take actions to benefit us. This is supported by the fact that the mass media has us believing that most doctors and researchers are doing it from the good of their heart. However, the issue of healthcare failure is not an isolated one. We have cases like this here. Similar failures are happening all around the world.
A shared central network of healthcare knowledge and news, trusted and developed with patients in mind
There is a gap in the market for a diversified healthcare portal which truly cares about the patients more than the money they can bring in. If we look at the major publishing houses for healthcare news and knowledge (not going to name names here), their biggest clients are healthcare companies and hospitals. We want to switch it around here at CuraHOPE, we want all discussions revolving around diseases and treatment and cure methods to be about YOU, not anyone else but you.
To do that, we have identified three key stakeholders we need to drive this change:
- Consumers who are suffering and fighting, we need you to build a trusted community, one of mutual support and knowledge, one offering sound advice to the community, survivors
- Passionate researchers who care more about the advancement of cures than a big fat pay package which might restrict your ability to innovate and come up with a cure which can save the lives of millions of people
- Doctors who care, and constantly stay updated to the various research papers and are not satisfied with just being practitioners, living a live of comfort yet one of limited influence
This is a race to the top, and until then, we will continue to be an alternative media for the voices of the many who might be afraid to voice out. We will continue to inspire and bring hope, because we hope to answer the hopes of the many with true cures in the future.