Tuesday, September 22, 2015

The price of neglecting neglected diseases

Today, as I prepare tomorrow's day of atonement, I was greeted by headlines on Turing's price hike for its drug, Daraprim. Not a good start for Yom Kippur preparation as the curses trembled in my lips.  Scientist friends and lay friends alike expressed their displeasure in social media and has some choice words for Turing's CEO. This also comes at the heels of me drafting a response to an anti-vax comment pointing the fingers on Pharma's selfish interests. You see, I was going to try to explain that each vaccine takes about 10-15 years of research, which translates to about $2 billion in cost, which would somehow justify the cost.  But that post was taken down before I could even respond. And now, I feel somewhat betrayed.

So, to wake up this morning to "CEO: 5000-percent drug price hike "not excessive at all",
was kind of a slap in the face. Here I am trying to gently and tactfully explain the cost of drug and vaccine R&D, while this guy tweets his flippant responses to detractors without restrain and at one point in a vulgar way, way worse than a rebellious teenager.

Here are some key points and facts for those interested.

  • Daraprim (Pyrimethamine) is a prophylactic antimalarial agent against Plasmodium falciparum and in the treatment of toxoplasmosis.
  • Toxoplasma gondii can be transmitted to humans by eating undercooked pork or lamb that contains this protozoa, or through ingestion of contaminated vegetables. Usually individuals don't show symptoms unless one is immunocompromised - those with severely weakened immune systems. 
  • As can be expected, these parasites usually infect already HIV-infected patients. Yes, these are opportunistic little bastards. 
  • In general, the drug development process is complex, lengthy, risky and expensive.
  • It takes about 10-12 years for a drug to travel the lab bench (research) to patient's bed. After drug discovery, which means sorting through tens of thousands of candidate compounds for a few active ones, the lead compound has to be optimized, get approved for trials, go through Phase I, II, III (and sometimes IV) trials before it can be registered and manufactured in large scale. 

  • Neglected and rare diseases (diseases that primarily affect the developing world) are given less R&D funding and attention because either a smaller part of the population is affected (smaller market) or there's smaller financial gain from developing countries and considered non-commercial.
  • Very few big pharma companies are interested in investing resources for reasons mentioned above.
  • Furthermore, many multinational Super Companies have downsized, and the first budget they cut is the less profitable infectious disease division.
  • Small companies, like Turing, often focus on technologies or niche markets. 
  • The wheel of drug discovery need to keep churning as pathogens evolve with increasing drug-resistance.
So, going back to the Daraprim case, I think it is reasonable that the drug cost be increased to support the cost of R&D. What gets me though is the amount of price hike. 5000% increase. Really. Can you at least break that down for us? If you currently have 25 scientists, and plan to double that, it would justify a 100% hike from $14 to $28, don't you? Triple it even, if needed for return of investment (ROI).  Let's be honest, the guy is clearly trying to recoup the cost of the start-up, but what else? I would really like some transparency here on how they came to that figure ($750). One thing to note is that this price hike is egregious, and does not represent the usual drug price increases. Was market research even conducted in this case? Plus, no one should really be flippant in addressing a situation like this. Ethical and humanitarian reasonings should apply.

It really saddens me that R&D researchers could take the blow for this, and will further bring the reputation of drug industry down the sink - inclusive of the not-for-profit ones. This kind of increase reflects the fault in an unregulated drug market. And I for one cannot wait to hear our the plans that our political candidates plan to unveil to address this.

As a former synthetic chemist, I suddenly had the itch to go back and synthesize that damn pyrethamine. (I'll atone for my language later.) This move should be a wake up call, and the only incentive one would need to put their hard efforts in neglected diseases.

This news make me really sick to my stomach. Oh wait - I hope it's not Toxoplasma, because I sure as heck can't afford Daraprim's price tag.

UPDATE: What do you know, social media has a voice after all! It appears that the price hike will be rolled back.  How low? We'll have to stay tuned for that. With all eyes on the company and the drug, and scrutiny from social media users, the government and big pharma, Turing better be doing their research.

Tuesday, September 8, 2015

A camping gem and our first treasure hunt

This labor day weekend, we went through with our 3-night camping plan in spite of the storm forecast. We headed to REI to get our rain gears, baked some trail mix cookies, and off we went!

While we don't remember why we chose to camp at Bear Head Lake State Park up in the Northwoods, we were blown away by its beauty when we got there. The campsite was surrounded by pines, and birch and aspen treens, and the hikes around the placid lakes were kid-friendly and so serene. The lakes (there were plenty!) shone like emeralds, and mushrooms of different sizes and shapes decorated the widely coniferous flora. To say that the 4 hour drive was worth it is an understatement.

Do I get points for these?
We didn't see bears, wolves or moose (thankfully?), but we did see and hear some eagles, slugs, and other little critters. Blue jays, woodpeckers and crows woke us up with their melodious singing. The fishing program was a success too! 

A family of chipmunks
were our constant visitors
One of about 4 caterpillars who
seeked shelter during the storm

How to teach your kids patience...

2 hours later, they caught the tiniest fish on the lake!

Geocaching 101:

I've always wanted to try geocaching as a fun addition to a hiking activity ever since I learned about it from our friend (Hi Ben!). But for some reason, my network connection is very limited at places we go to, or the idea of bushwacking with the kids was just not appealing.  Well, we decided to give it a try this time because the park had its own GPS for geocaching and we were told it didn't involve bushwacking (or at least only a few feet of it).

For those unfamiliar, geocaching is kind of a high-tech treasure hunt. The locations can vary - from park to a street in city to, apparently, even underwater. You're provided with coordinates to the treasure. For us, the park provided these. You enter the coordinates in the GPS device to navigate and find the geocache (a.k.a "treasure chest"). The device is accurate to about ~20 feet, then you're left on your own to look for it. When the geocache is found, you'll find treasure ans a logbook. You sign the logbook and take out the treasure and replace it with a new one for someone else to find... or you can just leave the treasure behind too. If you want to learn about the history of how all of this started, you can read it here.

When we did our hunt, we looked everywhere, under moss and cobwebs (eew!) but guess who found it? The most curious one of us four!  What a great outdoor activity for kids! And the kids were absolutely thrilled to find toys in the cache. They were only allowed to take 1 each.  We left a treasure from mommy, of course.

Some more pictures from our wonderful camping weekend!

He plays; she sings while staring at the stars.
Perfect place to enjoy play-doh while the chefs are cooking dinner

What's for dinner? Drool-worthy roasted corn and grilled hotdog!
And roasted marshmallows for dessert!
Enjoying the water for the last bit of summer left


And found the first sign of autumn