An extraordinary family

Yesterday marked the final day helming Persatuan SLE Malaysia (, a patient support group for SLE / lupus. The journey started in 2012 and time whizzed by rather quickly. It’s been 6 years.

Reflecting on those years have made me realise how tenacious our lupus warriors can be. I feel honoured that I have been given an opportunity to be a small part of their lives as each fights their personal battles while trying tirelessly to help those that truly need their help. Their smiles and laughter were undeniably genuine, so were the brave faces during the trying times of being ill.

My final term ended on a sadder note of having lost one of our committee members. She has taught me that life continues even in the face of adversity. We sometimes don’t even understand what true adversity really is. Her strength and determination to lead a normal life was palpable. Her positivity was infectious.

This is family. That’s what those years have taught me. If there was any success, it was about making a small difference in each and every one of those lives, when it mattered most. It’s about being a better listener. It’s about being able to share the joy of good health. It’s about experiencing sincerity and passion.

It has been an honour and a privilege.

Precious point in time

The pure joy of being able to be part of an immersive experience with songs they idolised is refreshing. This moment was captured, temporarily freezing time. The need to live for the moment is a lesson I am constantly being reminded of when I am with my kids. It is them telling me, “Daddy, come play with us, we are growing up and won’t stay this way!” As their parent, we already miss the previous versions of them and know that they are “upgrading” with each new day. And soon this moment will be a distant memory.

Media Blitz for Lupus

May was Lupus Awareness Month. This is to increase public knowledge of lupus and devastating this condition can be. It affects predominantly young females, a period where life is just beginning, whether it is their careers or their family. It is a vulnerable period for many, leading to depression and withdrawal from society. Some leave not only physical disfigurement but mental and emotional scars as well.

Vbuzz was an English variety show on Astro Vinmeen HD. Being on TV always adds additional stress when you have to look physically your best and be aware of all your irritating mannerisms when speaking. The hosts and producers were very reassuring. Many thanks to Loh Yu Mi for taking the pictures.

This was followed a few days later on BFM 89.9, the business channel. The interview was done by Meera Sivasothy. The message was again lupus and what the Malaysia SLE Association does for lupus patients.

Drug pricing

An article I wrote last year worth revisiting

Out of Reach

by Dr Benjamin Cheah Tien Eang, Consultant Physician & Rheumatologist

The saga involving Martin Skreli unearthed some dark truths about the pharmaceutical industry. Skreli, as the then CEO of Turing Pharmaceuticals, increased the price of an existing antiparasitic medication by 5,556% and there was nothing anybody could do about it but only to hate him.

However, it did expose the lack of drug pricing regulations in the pharmaceutical industry. Till today, no one has any idea how drug prices are decided upon. Justifications for pricing a medication more steeply ranges from the high cost of research to manufacturing. Hence, many newer treatments are placed out of reach for the average Joe without an insurance plan.

Science and technology has allowed us to now develop targeted treatments for many diseases. Picking off a sole target responsible for the causation of disease, can not only provide superior results versus conventional treatments, but with less side effects. Unfortunately many of these ‘smarter’ drugs are expensive and hence unavailable in many parts of the world.

For developing countries, the average household income is hardly sufficient to survive the rising cost of living. The price of some medications can be more than the monthly income of most households. Pricing based on the gross domestic product (GDP) or the gross national income (GNI) of a country is hardly a consolation as it is not reflective of the average disposable income of a family. Governments struggle to cope with escalating drug prices as it creates a significant constraint on their budgets.

Keeping innovative and superior treatments out of reach to those that need them the most is a betrayal to Mankind. As profits for pharmaceutical companies sore annually, patients are left poorer and in dire straits. Something must be done to justify drug prices in a more transparent manner. It can literally be a matter of life and death.

In rheumatoid arthritis for example, a new class of medications called “biologics” has revolutionised the treatment of this once debilitating disease. Preventing irreversible joint damage and relieving debilitating pain is now an achievable dream for these patients. Or so we may think.

Unfortunately, “biologics” are priced so steeply that it keeps it out of the hands of the majority of patients. Moreover, they are needed on a long term basis. Imagine spending all your savings on a medication that is suppose to make one’s life better. As patients reach deep into their pockets to solve their physical pain, another equally paralysing menace emerges. I call it the ‘financial pain’. Make no mistake of its equally destructive force.

So we spend so much money thinking that we are making a difference to the lives of patients, only to realise all we did was to shift the dust.

This conundrum raises the question of what constitutes an advancement in Medicine. A true advancement is when we can develop an innovative treatment that can be enjoyed by all of Mankind. It is not to enrich certain quarters but is to be shared by all that inhabit this little planet.

Perhaps it is wishful thinking, but there is little harm in dreaming.