Selling Hope For $56,000/year

I am deeply concerned about the way the US Food and Drug Administration (FDA) has approved Biogen’s aducanumab for use in people with Alzheimer’s disease.

As a neurologist, and currently a PhD student in Clinical Neurosciences working on memory disorders, I see people with various forms of cognitive impairment. Indeed, many of them have Alzheimer’s disease and are desperate for something, anything, to treat the condition.

Sometimes it’s difficult to appreciate how devastating it is to slowly lose one’s memory. Unlike losing an arm to gangrene, for example, it is not a painful condition. And yet, you can lose an arm, or a leg, and still be essentially the same person. But take away someone’s memories, and what’s left is but a shadow of their former self. Ask any person caring for a loved one who has dementia: what wouldn’t you give to restore their memories so that you can have just one more day with that person?

The approval of aducanumab is highly unusual because there’s no convincing evidence that it actually works. Sure, Biogen are claiming that in a subset of patients, on a certain dose of the medication, you can see some statistically significant (God I hate that phrase!) difference. But let’s be clear here: this sort of selective interpretation of the evidence is rightly frowned upon by the scientific community. To make matters worse, aducanumab has potentially dangerous side effects: 40% of patients developed brain swelling after receiving it.

Despite all that, I’m still willing to accept the justification for approving it under rigorous conditions. After all, Alzheimer’s disease is a devastating condition, and we are all desperate for a treatment.

What I cannot understand, and cannot accept, is how the FDA can simply let Biogen set the price at $56,000 for a year’s supply of aducanumab.

This is cruelty.

This is greed, taken to a whole new level.

How can it not be, when, according to this article in Nature, “if 5% of the United States’ 6 million Alzheimer’s patients receive the treatment, the drug’s revenue would reach nearly $17 billion per year”?

Seriously, who needs 5G-microchip-anti-vaccine controversies when real life is even worse? How do we justify letting a company charge the equivalent of people’s life savings for an unproven treatment just by dangling the chance of a cure?

So please spare me all this nonsense about caring for people with Alzheimer’s disease. If Biogen really cared about patients, they wouldn’t be charging $56,000 for an unproven treatment. I hope the National Institute for Health and Care Excellence (NICE) here in the UK will do the right thing by not approving its use on such flimsy evidence.

Most Scholars Believe

How difficult can it be to acknowledge some basic facts about Israel & Palestine?

Well, if you’re a columnist writing in America, it seems like you have to make all kinds of excuses in order to downplay the cruelty of what is happening on the ground.

Take this article by Nicholas Kristof in The New York Times, entitled ‘Were My Criticisms of Israel Fair?‘:

There is no doubt that Hamas committed war crimes in shelling Israeli civilians. But most scholars believe (with not quite the same certainty) that Israel also committed war crimes with its attacks on Gaza that were far more lethal to civilians than attacks by Hamas.

I mean, seriously? Think about that for a second.

Most scholars believe (with not quite the same certainty)…

First of all, I’d love to meet these scholars who are, you know, still on the fence about the legality of launching rockets at civilians.

Secondly, what kind of powerful stuff is this guy smoking that he can actually combine the phrases ‘Most scholars believe (with not quite the same certainty)’ and ‘far more lethal to civilians than attacks by Hamas’ in the same sentence? Dude, whatever it is you’re smoking, gimme some of that!

Sure, it’s bad that Hamas are shelling Israeli civilians. But come on, how many innocent Palestinians have to die before these ‘scholars’ can finally be certain that Israel’s attacks on Gaza (that are ‘far more lethal to civilians’, mind you) represent something worse: modern-day oppression against an impoverished population by a militarily and technologically advanced nation.

Contrary to popular (American?) belief, most Muslims don’t actually want to see the annihilation of Jewish people. I know…shocking, right? The vast majority of people around the world, Muslim and non-Muslim alike, just want peace. But how can there be peace when the most powerful nation on Earth continues to give unconditional, no-questions-asked, financial and military support for Israel?

How?

Vaccination #1

Alhamdulillah, I received my first dose of the Pfizer/BioNTech vaccine for COVID-19 last week at the Kassam Stadium here in Oxford.

The whole process was very smooth. I joined the (short) queue 5 minutes before my 12.45pm slot. At the registration counter, I was asked to confirm my full name and date of birth and to show them my booking reference. The jab itself was painless. All in all, I think it took me less than half an hour to go through the whole process. Well done to the authorities for setting up such an efficient service.

According to one of the stewards there, they’re giving 2,500 jabs per day at the Kassam Stadium (1,000 first-timers and 1,500 returnees). I suppose that number varies day by day, but still, very impressive!

Side-effect wise, all I had was a bit of soreness in the arm which didn’t really inconvenience me.

I thought I’d write a bit more about vaccinations in general, but I’ll have to leave that for a later article because my son a.k.a M3 has already asked me a million times already to play with him. He’s opened an ‘Everything Shop’ and I’m supposed to be his first customer!

In the meantime, take care, stay safe, and get vaccinated y’all!

Stepping Back From The Brink

We need to take a step back from the brink, my friend.

I worry that we are in a situation where everyone’s just feeding their own egos while the world continues to burn around us.

Medical professionals are busy making sarcastic remarks about how dumb people are to refuse vaccines. Vaccine skeptics are fuming at how dumb people are to believe in the ‘plan-demic’. Meanwhile, everyone is angry at some random politician or celebrity for not following the latest version of our SOP.

How did it come to this?

To a certain extent, social media is responsible for the rapid escalation of conflict in society. Social media is optimised for engagement, not truth. What this means is if the algorithm thinks you are even remotely interested in vaccine conspiracy theories, it tries to give you similar (but often more extreme) content in the hope that you will keep watching/tweeting/scrolling.

But we cannot simply lay all the blame on social media. We need to look at ourselves and think: how much are we responsible for this crisis? Sure, it can feel extremely rewarding to bash each other on social media, but at the end of the day, no one wins (see my previous post Adab Perbahasan). It almost reminds me of monkeys flinging poo at each other. Lots of action, terrible noise, everyone’s having a good time…but boy, what a stink!

I look with horror and sadness at what has become of my beloved home country Malaysia. If anything, this pandemic has really underlined the stark divisions between those who ‘have’ and those who ‘have not’.

If you’re lucky enough to be able to work from home, and your job is secure, your kids are well-fed and happy, then be thankful for the blessing. Bersyukurlah

But don’t forget that there are many other people who rely on their meagre daily earnings in order to scrape a living. They are often invisible to the authorities because they don’t have much power or influence. They don’t have many followers on Instagram, they don’t appear on national TV. And yet, they have families too, kids who are forced to go to bed hungry because their parents could not go back to work. These people deserve just as much kindness and compassion as anyone else.

If you’re looking for an avenue to help, one place where I can personally guarantee it will be useful is to donate to the IMAM Response & Relief Team (IMARET). Full disclosure, IMARET is led by one of my closest friends Dr Ahmad Munawwar Helmi, but that is precisely why I am 100% confident in their ability to make use of your donations. I’ve seen them do it time and time again with little regard for their own comfort and wellbeing.

So let’s take a step back from the brink. Stop arguing with each other all the time. Open your eyes and look for opportunities to help the poor, the downtrodden, the less fortunate.

In short: be kind.

DPhil Diaries #2

Shall I compare thee to a summer’s day?

Thou art more lovely and more temperate.

Rough winds do shake the darling buds of May,

And summer’s lease hath all too short a date.

English weather is…English weather.

Not only do rough winds shake the darling buds of May, they also make it bloody difficult to cycle uphill towards the John Radcliffe Hospital! These days, I find myself going to the hospital more often because I’m desperately trying to finish scanning my research participants before the end of June 2021.

Anyone who has done a PhD will know that at some point during your journey, you just have to put your head down and work all out to finish your data collection. I still have about 15 participants I need to scan; it is not impossible, but it will require a bit of luck in terms of how many people say yes when invited to join the research project.

Eid Mubarak!

Alhamdulillah, today marks the end of Ramadhan and the first day of Syawal. As a kid, I’d be lying if I told you I didn’t look forward to the end of the fasting month. But as I approach the end of my fourth decade here on this earth, increasingly I feel a sense of sadness whenever Ramadhan ends. Will I live to see another Ramadhan? Allahu a’lam, only God knows what the future holds.

Eid celebrations here in the UK are muted, obviously, and I myself will be cycling to the hospital again today for another MRI. Thankfully, the situation has improved enough to allow two households to meet outdoors, so if the weather permits inshaAllah, I will be visiting a friend’s house later today for a ‘Hari Raya‘ open house in his garden.

The Real Tragedy of Palestine

Meanwhile…

My heart goes out to the people of Palestine who are facing yet another wave of oppression by the Israeli government. I find the reporting in most new outlets to be laughable, bordering on being ridiculous. To treat Israel and Palestine as two equal forces fighting against one another is absurd; the former has advanced weaponry and is backed by the world’s superpowers while the latter barely has enough to make ends meet.

I often ask myself: why do the Palestinians have to suffer so much? Why does the modern world, with all its dreams of democracy, capitalism, gay rights etc. tolerate this nightmare?

That brings me to the real tragedy here: the betrayal of Palestine by the rest of the Muslim world. We Muslims are quick to condemn Israel, but loathe to criticise our own governments for being so compliant in the process.

Why is it that Gaza has to suffer when it literally has a border with Egypt, a supposedly Muslim country? Why are Arab countries normalising diplomatic relationships with Israel despite its continued oppression of the Palestinians?

These are some of the difficult questions we must ask ourselves.

How can we expect to hold Israel accountable when many Muslim countries (Malaysia included) don’t even have accountable governments?

Sure, we can boast about having the world’s tallest building next to the world’s largest shopping mall, but what use is that when we can’t even open the Rafah crossing to help the Palestinians? There is a very good reason why in the Western world, when someone refers to another person as ‘behaving like an Arab prince’, there is nothing honourable whatsoever in that term.

To make it absolutely clear here, I am not calling for more violence against anyone. Israelis have just as much right to live peacefully as Palestinians. You can be Jewish, Muslim, Christian, atheist…it doesn’t even matter, everyone has a right to live peacefully.

But for the longest of times, we have asked much from the Palestinians while closing one eye to numerous Israeli transgressions. How much longer are we willing to let this happen?