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.

BASIC INFO:

• 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. 

POINTS: 

• 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.

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

CSA Diary: Of alien vegetables and lasting peas



Un-beet-able!

Eh. So I lied about blogging more about my wonderful CSA baskets.  What can I say? Things have been so hectic at work, at home, and at fun places and times!  Writing kind of took a back seat yet again. But rest assured, the CSA continue to deliver good farm-fresh and exciting vegetables and I continue to feed my Iron Chef alter-ego. Since my last (and, for shame, first) blog entry on CSA, we've gotten more cabbage, swiss chard, lettuce, onion, broccoli, cukes, cukes and more cukes than we can handle! Allow me to share some ideas on how we most enjoyed these CSA vegetables.

Zucchini: Still the most versatile vegetable around.  From stirfry to savory bread and sweet pastries, I won't tire of getting this in my basket.

 

Regular and Chub Cukes: Mind you, I'm not a pickle fan, and I can only have so much cucumber salad, so I finally decided to buy a zucchini noodle maker and zoodled these cukes away. Wait, "zoodle" is a word, right?  With light peanut dressing, they were absolutely delicious!

Carrots: We got the really skinny ones, so I couldn't zoodle these. They were great chopped and stirfried with the peas though. 
 

English Peas: I found shelling these peas very relaxing to my nerves as I watch my 2 girls jump off the couch in that 'crouching tiger, hidden dragon' kind of ninja jump. Yes, relaxing.  Some folks would say that you can't eat the pods because it's too fibrous, but we've tried it both ways - shelled and nto, and enjoyed both immensely.  My plea to the girls: Give peas a chance.

Red Potatoes: Not everything I cook gets thumbs up all the time.  I had high hopes for these baby reds and made mashed potatoes out of them. FAIL. Totaly. They were too gooey and pasty to be mashed. I salvaged it by making fritters/latkes the following night. The following week when we got them again, I boiled then baked them with cheese. No messing around with these spuds.

  

Strawberries: This almost didn't make it to the house. It's a good thing I love my family as much as I do. Otherwise, I would have parked somewhere and enjoyed this by myself. So sweet and succulent - unlike the tart and firm ones from the store. BUT, it's even better enjoyed with family. I also finally shared with them the Filipino way of enjoying strawberries. Dip them in powdered milk! Seriously, you gotta try it. The girls loved them this way too. Too bad strawberry season is over. Sniff.

 

Grape Tomatoes: I will never tire of eating these sweet, 'pop-in-your-mouth' veggie candies.  I broil them for 10 minutes, drizzle with a bit of balsamic vinegar, and serve with a sprinkling of fresh basil leaves. YUM!  Believe me, my youngest hoard these on her plate to everyone's frustration.

 

Kale: So, you don't like greens, huh? That's what everyone says until they take the first bite of the crunchy, crispy, delicate kale chips. Baked at 350F for 10 mins, this makes for an easy, healthy snack. My kids get excited whenever they hear that we have kale in the house. That's saying a lot since one of them is a self-proclaimed picky eater. By the way, I tried making swiss chard chips and there were no takers.  It didn't really crisp up like kale did.  I'm guessing higher water content?
 
Kohlrabi: This vegetable is really starting to grow on me. In the beginning, it was fairly intimidating in its alien looks - with things sticking out of it like antennas. But after sauteeing it, I realized it tastes very mild, just like broccoli stalks, but milder even. So, I started cooking with it more, and CSA kept including them in baskets week after week, to my delight. I made stirfry, latkes (with zucchini), and they've even graced double chocolate chip cookies. When prying, picky eaters inquired about the green stuff in their treat, I say it's green apples. Phew.

Tomatoes: Enjoyed as caprese salad so far, but will probably make soup and sauce with the rest.

Beet: TBD - will most likely be roasted. 
 

Sugar Snap Peas: TBD

Raspberries: TBD

More delicious ideas soon!

Wild, wild west: Badlands and Black Hills

From the names of these places, one would think that we've been casted away in Mordor! Thankfully, it's really just in our neighboring state of South Dakota, albeit it took us about 8 hrs to get there. 

On the last weekend in June, while driving to a state park, hubby and I decided that we should go somewhere for July 4th weekend. "Let's go to the Badlands!", we agreed.   There and then in the car, we looked to see if there are still places to reserve. And yes, we found a seemingly decent cabin near the Badlands, and that's pretty much how we operate these days - on a whim and without much planning ahead.

We left the house at 4 am, and with 2 stretch stops and driver swithichg, we reached the Badlands National Park around noon - Mountain Time. Somewhere in the middle of South Dakota, the time zone changed from Central to Mountain.  Pretty neat! 

A note of caution:
These cliffs easily erode and the rock could be chipped away easily with a fingernail,
so make sure you stay clear from the edge when you hike.

When we got to the Badlands, we were immediately treated to a wonderful view of the pale sandstone structures.  While it may be less impressive than it's red counterparts in Utah's Bryce canyon, and the black ones in Saxon Switzerland, Germany, it's still impressive nonetheless.  The name "Badlands" gives you a clue as to its rugged landscape forming ridges, spires, gullies and 'castle-like' structures which the girls enjoyed seeing. Unlike Bryce canyon, the rock layers are heavily eroded and do not form hoodoos. At least, we didn't see any. The name "Mako sica" was actually given by the Lakota which means eroded land because of the terrain.

 



Sun setting in the Badlands

It was very hot when we got there even though it was only in the mid-80F. Interestingly enough, when we went back to the park 2 days later, it was quite chilly.  So, if you're planning a trip here, make sure to bring lots of water, a hat, sunscreen, sunglasses, and a jacket because you just never know when temperature it's going to be that day - even in July!  And I also saw some (smart?) Asians with their umbrellas out. You just gotta love them! 


And blankets it in colors

After a short hike in the Door trail, the kids were pretty hot and sticky.  We checked in to our cabin and headed to Wall Drug.  Since the signs for this place speckled the 500 mile road from Minnesota to South Dakota, we knew what to expect - stores, splash pad, free ice water, 5c coffee, donuts, dinosaurs, belts, and everything else you could imagine or ask for  - including a jackalope. Not exactly the attraction we seek, but the kids enjoyed cooling off in the splash pad. 
 




Washington's profile

Truth be told, there's not really a lot of young-kids-friendly hiking in the Badlands. So, on the next day, we decided to go to the Black Hills and check out some more kid-friendly hiking in that area. Just to make it more interesting, fate threw a wrench, or rather a nail, in our plans and we had to spend a few hours dealing with our flat tire. But that didn't stop us from more adventuring. We drove through the Black Hills and went to Mt. Rushmore in Keystone. Seeing George Washington, Thomas Jefferson, Abraham Lincoln, and Theodore Roosevelt's huge visages amidst granite and greens was more impressive than I've ever imagined. Kudos to sculptor Gutzon Borglum, who I learned studied with Rodin, and used dynamite to carve the massive granite mountain.What best way to celebrate July 4th than here.  The chiseled mountain and the presidential trail highlighted 4 past leaders who made huge contributions to the US history.



 

News Flash: Black Hills > Badlands.

 

There I said it! (well, at least in my opinion.) While a lot of peaple will travel from far away lands to visit the Badlands, a lot of those will most likely skip the Black Hills National Forest. Big mistake. "Black Hills", although ominous-sounding, is named because of the hills' dark appearance, as they are covered in mostly ponderosa pine trees, with dark bark and deep evergreen needles. For many Native Americans, these hills has offered physical and spiritual renewal. And you won't know it until you visit it.

Before heading to Rapid City to have dinner, we stopped at a tucked-away Breezy Point picnic area in the Black Hills forest to get the wiggles out.  It was a great find and treated us to a great view of granite peaks.

Splash pad, Rapid City. If there's a splash park somewhere,
we'll find it.



Roughlock Falls - supposedly provided scenes for Dances with Wolves,
but I honestly don't remember the movie well.

The following day, July 5, we decided to continue exploring Black Hills National Forest. After having explored the Southern Hills a bit, we decided to take the scenic route checking out the Thunderhead falls area south of Rapid city and driving on  385 to the Northern Hills to Spearfish Canyon Scenic Byway.  This drive is enthralling. The limestone palisades tower on both sides and makes for the most breathtaking scenery.


Run, river, run.

 

Pactola Lake

As far as hiking goes, the greatest part is our hike in Pactola lake, and meeting a Lakota couple and their dogs. We had a picnic on the ridge with the view of the lake.



We would have loved to continue on to Black Hills in Wyoming to check out  Devils Tower National Monument, but the weather didn't cooperate and shoo-ed us back to Rapid City. Take my word for it, if you're in South Dakota, explore the Northern and Southern Black Hills. It will be good for your heart.

On our last morning before heading back to Minnesota, we left early for the Badlands park and we saw some animals enjoying their breakfast - prairie dogs, big horn sheep, and proghorn antelopes. We even saw some bisons from afar but couldn't get near enough to take pictures. Since it was also cooler, and the hills were soaked by rain the day before, you can see bands of vibrant colors of earth of peach, pink, and creme hues.  I swear, I've been so spoiled by geology this past few months! Which brings me to this question - Where next??!



Dances with Antelopes

 

The kids saw flowers, insects and a burrowing owl in the prairie.

In summer

Summertime,
An’ the livin' is easy
Fish are jumpin'
An’ the cotton is high.


I just read somewhere that, apart from being Canada day today,  July 1 is also International Joke Day and Creative Ice Cream Flavors Day. Who ever comes up with these stuff? More importantly, however, it is the beginning of the 2nd half of the year. Sure, it's not January 1 where resolutions are made left and right, but one can at least take a day to reflect on what 2015 has offered and make conscious decision on how you'd like to steer the year forward through the end. That may mean tweaking diets or going outside more with summer finally here or laughing a bit more - it's international joke day after all.

One of these mornin’s
You're goin’ to rise up singin’
Then you'll spread yo’ wings
An’ you'll take the sky.

The weather here in Minnesota has been gorgeous and the produce bountiful. I can't believe summer only started a week and a half ago. This past Sunday, we went hiking at Mille Lacs Kathio, a park 2 hr drive away. The hike was filled with mosquito-swatting memories, but we had fun nonetheless. What do you expect from a "thousand lakes"park? And this is why minnesota's state bird is mosquito! Those suckers (blood) easily found parts of skin that we didn't spray, and they easily penetrated our clothes. We cut our hike short and enjoyed the little watering hole instead. The kids had fun looking for turtles and catching tadpoles.

But till that mornin’
There's a-nothin’ can harm you
With daddy an’ mammy standin’ by.

Since I was traveling on business last week, I also didn't get to cook our CSA-supplied produce. I made up for all the lost cooking time in the kitchen since. Swiss chard, kohlrabi and baby potatoes were made into deliciously creamy stew. Zucchini was turned into oven-baked cheesy fritters. And salad everyday! But the highlight were the strawberries and currants we picked on Saturday. The strawberries were so delicious, my 2 year old daughter was eating them stem and all. We've also made strawberry cream cheese cookies with them, and put them in salad, and jammed the rest. The currants were juicy and tart. I added them to muffins and tea cakes using almond flour, and to savory turkey meatloaf.

Cheers to Summer! Wherever your feet take you, don't leave your sunscreen and bug spray!
























 

"And so with the sunshine and the great bursts of leaves growing on the trees, just as things grow in fast movies, I had that familiar conviction that life was beginning over again with the summer.” ― F. Scott Fitzgerald



Dresden Diary, Day 3: Do you believe in fairytales?

 

I see castles and fortresses, and hillside vineyards; plains of wheat and barley, and sandstone mesas… not in a fairytale book or romantic novel, but in real life. Not exactly the kind of images one thinks of when imagining Germany.  But here they are, all in front of me as the bus cruised along the hi-way taking us out of Dresden and on to Saxon Switzerland, still in Germany, not Switzerland. It confused the heck out of me, but found out that the name was given by 2 Swiss artists pining for their homeland.

On my last full day in Germany, I joined a mid-morning to mid-afternoon hiking tour of Saxony.  Mind you, the conference is ~11 hours long, so there was still plenty of time to get my science fix, in addition to the exchanged pleasantries by participants en route, which goes: “ what polymer do you work on?” or “Have you tried such-and-such solvent system?”.

I have to admit, romantic is not the first word that comes to mind when I thought of Germany prior to this trip. It was more like – precision, museum, history, etc…  But the quaint villages, fairytale-like castles, and wildflowers dotting this drive along the snaking Elbe river makes for great Hollywood scenery.  Indeed, our tour guide informed us that several scenes from the Grand Budapest Hotel, a film I adore, was shot in this region. Hollywood-aside, the greens, rivers and distinctive landscape makes Saxony a dramatic paradise just a short drive from Dresden.





There's supposed to be a goose sillhouette there,
but as hard as I squint, I still couldn't see it.

Our first stop was at the Sächsische Schweiz (Saxon Switzerland) National Park to see the Bastei rocks, a sandstone formation overlooking the Elbe River and offering spectacular views of the Elbe valley, table top mountains and sandstone, and forms the heart of the National Park. This park bordered Bohemian Switzerland, which is in the Czech Republic. We crossed the sandstone Bastei bridge made of sandstone rocks, cliffs and ranges. The rock formations and vistas have inspired many artists, dubbing this place Painters’ Way, where painters once sought inspiration for their masterpieces. Lucky me, I got to see it on a dreary day – the painters’ favorite weather – and on a weekday with very few people around.  



Proof that I was there. Ha.



The valley below and the mesa farther back

As we continued on, we had to pay 2 euros to enter Felsenburg Neurathen (Neurathen Castle), which was once a rock castle built in the 11^th century, but now just ruins. It’s still amazing to see how the people in that century built the fortress by taking advantage of the rock cliff tops.  I have no idea how they brought the catapults and stone cannonballs up on top, but I guess in the name of defense, you do what you got to do.

 

Basteibrucke



Better pictures of the Basteibrucke here.




Statue of a monk hauled up by brave rock climbers.

 

(No, mom, I didn't climb up.)



Old style defense: catapult with stone cannonballs



 

 














Thankfully, I had a protein bar in my bag as we voted to skip lunch and headed straight to Königstein Fortress, Europe’s highest fortress, and covering an entire table mountain. There is really no way to appreciate its massiveness and grandeur from my iPhone pictures, so here’s an aerial photo snatched from the web, and my phone shots below.   

Königstein - built by nature and man

The valley below

Königstein, or king’s rock, is a cleverly designed fortress –a mix of man-built genius and sweat extending the walls from its natural stone formations. It was deemed unconquerable and was a state prison for a time in the 1920s and was used as POW camp in WW I and II. Its castemates housed the state treasure and works of art from the famous Zwinger during war times. It’s easy to see why the fortress was never conquered in its 750-year history.



They meant business.



 

No kidding.






Castle gates a la Game of Thrones

The current tennants -
He (and a hundred others) said hi to me 

As much as Dresden has taught me much about history, (and ehem, given birth to the first milk chocolate), I am really touched most by Saxon Switzerland’s unique and evocative landscape. How can something so beautiful exist?!  This tranquil region reminds me that there is more to Germany than its war history.  I used to think of Germany with somber tones and hues, but no more.  I’m glad I capped this trip with the German countryside. And the lasting impression I’m leaving with is of how a gem lies in East Germany – a place I’ll look forward coming back to.

This is the place where fairytales are born.