Prescription drug research is not new for Uncle Sam

Have you read the article in The New York Times about the “new” institute Obama and the federal government have created called the National Center for Advancing Translational Sciences? It’s going to have a $1 billion budget its first year of operation, and its reason for being is that private drug companies aren’t coming up with new prescription drugs fast enough, so the government wants this institute to do that.

This is a very complicated subject; one that I’m sure I won’t do justice to because the levels of it are almost unfathomable. However, there are a few things I know, a few things that made me go, “Huh?” when I read the story in the Times, and I will share those things with you.

First of all, it’s important to know that the National Institute of Health had a budget in 2010 of $31.2 billion. Almost all of that money – about 90 percent – is spent on basic science research in the form of grants to institutions of higher learning and its own labs in Bethesda. What is basic science? Basic science means finding the connection between A and B. It means identifying a single protein on a single gene. Why identify the protein? The hope is that with the protein identified, an enzyme produced by that protein will also be identified and then tied to some disease or another.

All of that research takes a long time (and millions and millions of dollars), and private companies generally don’t take part in it. What they do is they wait until something is discovered (by a federally funded institution) and then one way or another they get a hold of the research – through less than honorable means because the researcher didn’t patent his discovery in time, or they bring the researcher on board, enticing him away from academia. Either way, the private company makes use of the millions of dollars the federal government has invested.

My first point being, this announcement of this new center makes it sound as though Obama’s administration is just now getting involved in the research for and manufacturing of prescription drugs. That is soooooo not the case. The federal government has been funding drug research for more than 80 years.

My second point has to do with genetic patents. When the Human Genome Project revealed the sequencing of our DNA, there was a gold rush by many private companies to identify and then patent genes (there are 30,000 of them) as well as the proteins produced by the genes (there are about 300,000 of those). These patents were issued – by the FDA – without anyone knowing really what any of those genes and proteins did. It was simply, “I found it. I claim it. Because, by God, if there’s any money to be made off of it, I want my chunk.” Well, those patents last 20 years.

New drugs can’t be discovered before the basic science of the genes and proteins are understood. Who owns a bulk of the patents that have been issued? Private companies. Who does (or funds) the majority of the basic science behind new drugs? You do. I do. The federal government does. Are they talking to each other? They don’t like to.

My last point, which I guess just sums up what I’ve been talking about, is that this new center (IMHO) isn’t needed. In order to get this center up and running by October, one of NIH’s existing institutions has to be eliminated. The government is aiming that arrow at the National Center for Research Resources. Over 1,000 people have commented on a complaint blog about this closure, and many (if not most) of them are doctors and researchers who have benefited from grants issued by the NCRR and who wish for their research to continue, even if the NCRR is dismantled. The NCRR’s annual budget for 2010 was $1.308 billion. The administration plans to transfer some of its functions to the new center. Does that mean some of its budget will go to the new center as well? Will we continue to fund the research being done by the NCRR to the tune of $1 billion-plus as well as the new $1 billion budget for the new center?

My biggest problem with the whole thing is that Obama’s administration is putting this new center out there as something that’s never been done before – the government’s finally getting into the search for new prescription drugs! – and that’s malarkey. I’m also confounded by what is actually going to take place at this new center. And I’m fearful that it’s just more money being taken from our pockets to fund things already being done, to pay people to do jobs other people are doing. More government, but nothing more to show for it.

I learned a lot about this from reading a book for my freelance job called The $800 Million Pill. If you’re interested in learning more about how private drug companies benefit from publically-funded research, about how it’s another bit of malarkey when the drug companies tell you they have to charge excessive amounts of money for their medicines to help fund further research, pick up that book. It’s very scientifically written, but it’s an eye-opener.

Julian Hurley shouldn't have died.

WARNING: Rant ahead! I don’t intend to be politically correct or worry about people’s feelings. I’m getting on a soapbox.

In my job, I come across children every now and then who seem to belong to parents who really don’t want the job they signed up for when Tab A inserted itself into Slot B and a zygote resulted. Being a parent comes with multiple responsibilities, none of which require you to be your child’s friend.

Some of us are blessed with amazing relationships with our kids, but those relationships did not grow as a result of being friends. They grew because we taught them values, accountability, and respect. They grew because we let them know we believe in them, because we support them, because they know we have expectations for them and want them to have expectations and goals for themselves. They grew because we covered all of it in love – love when they’re adorable and sweet, and love when they’re difficult and challenging. We are the constants in their lives. They have to know we’re there, that every day we are going to show up for work – the work of being their mom or their dad.

We need to be involved. We need to put our kids first because that’s what the job requires. We need to know who their friends are, where they are spending their time, if they’re doing their homework, and if they’re not – why aren’t they? We need to just plain talk to them – make sure we know them as people. What are their hopes, their dreams, their fears? We need to offer guidance and strength, discipline and boundaries. And we need to be people our kids can look up to - people they want to emulate. We need to live good lives.

We don’t get a do-over when it comes to raising our kids, just ask Rhonda Hurley.

Hurley was released from the LaPorte County Jail on Monday – too late to save the life of her 4-year-old son, Julian. When she went to jail in September for welfare fraud, she left her 7-year-old son and Julian in the care of Jimmy Isbell, a man she said she’d known for twenty years. According to police, it appears as though Isbell had been abusing Julian for days – beating the little boy with his hands and his belt – until Julian died from his injuries on Friday. The older brother has been placed in a foster home. The oldest of Hurley son’s – an 8-year-old – lives with his father.

Hurley has told reporters she feels horrible. Julian’s grandmother is heartbroken. Yeah, I’m sure they are. The death of a child always makes us sad.

But what about a child’s life? Why didn’t the life that Julian was living – being forced to live because of the actions of his mother – make anybody sad enough to do something when it could have made a difference for that little boy?

Our children are our greatest gifts and responsibilities – for as long as our lungs breathe the God-given air. If you don’t know who your children’s friends are – find out. If you don’t know where your children are spending their time – find out. If your child is struggling in school, talk to them, to us at the school, about it.

Learn the word “no.” They don’t have to have everything they ask for. They don’t need to get to do everything they want to. “No” isn’t always easy, but sometimes it’s essential.

And for your children’s sake, if you’re doing something that could get you thrown in jail, stop it. Your kids need you – in every sense of the word – whether they’ll admit or not.

God knows, Julian Hurley deserved much better than he got in his four brief years on Earth.

Olive Kitteridge: Pulitzer Prize winner yes, but not my favorite book

There are lots of reasons that cause me to pick up a book to read – probably many are the same reasons you choose one book over another, why one continually draws you into the bookstore, your fingers tracing the title on the spine, yet you leave it languishing on the shelf as some newer title calls to you. Maybe you think, as I do, “I’ll come back to you, I promise, but I HAVE to read this other one NOW.” (If you ever see me talking to myself in Barnes & Noble, this is the conversation I’m having . I’m not trying to dissuade the aliens from beaming me up – I promise.)

This tug-of-war is what happened with me and Olive Kitteridge by Elizabeth Strout. Published more than two years ago – going on three now, actually – I read a review when it was released and thought it sounded intriguing. I’d never heard of Strout. (Make of that what you will – she won a Pulitzer for Olive Kitteridge.) Maybe my unfamiliarity with her work made it easier for me to ignore Olive when new books by some of my favorite authors called to me. I know there were multiple times that I had Olive in my hands – and in my cart at Amazon – but failed to purchase it. Until I got my Kindle. The Kindle version is very reasonably priced, so I figured if I didn’t like the book, or Strout’s style, I wasn’t out the price of a traditional book. If Olive turned out to be one I wanted to hold onto, I’d go ahead and buy a hard copy after finishing the Kindle version.

Well, I’m not buying the hard copy.

That’s not to say I didn’t like the book. Overall, I guess I did. Olive Kitteridge was a well-constructed, cantankerous character that I won’t soon forget. At times I pitied those around her who were subject to her insensitivities, but more often than not, I pitied her.

What I wish I had known before I read the book is that many of the chapters in it were previously published as short stories. Had I known that, I would have been less surprised (and aggravated) when characters were introduced for a chapter and then never heard from again. I like books that have characters that I feel as if I know personally, characters that I miss when I finish the book. How can you get to know someone in a single chapter? The answer is – at least for me – I can’t.

All of the stories/chapters in the book are connected through Olive, which is a cool vehicle for the story. I just wish that I had gotten to spend more time with some of the minor characters, and maybe not gotten to know some of the others at all. Olive is basically the same brusque, cold woman regardless of whom she’s interacting with. I did appreciate the difficulties she struggled with inside herself. I pitied her when she felt abandoned by her son, yet angry at her when she wasted her husband’s love. I’ll remember Olive. But that’s about all I’m taking with me from this book.

Many criticisms of the book describe the literary value of Strout’s style and how well she explores human themes throughout all of the stories, even if they’re brief explorations of those themes of loss, grief, love, desire. I agree. She does that well. That’s just not why I tend to pick up a book and read it for pleasure.

So, now you know what you’re getting into if you pick up Olive Kitteridge. If you do read it, or if you have read it, I’d love to hear your take on it. I feel like a numbskull saying I’m disappointed in a Pulitzer Prize winning novel. But darn it, I really was.

Preventing teen pregnancies - by paying them?

So, if Tori had an older sister who’d gotten pregnant as a teenager, I wouldn’t have to worry so much about how to fund her college education. There’s a program for that. It’s called College Bound Sisters, and the program pays its participants seven dollars a week (plus another five dollars a week for transportation costs) to attend a meeting – providing, of course, they show up unfertilized.

Girls can begin attending when they’re twelve years old and can remain part of the program until they graduate from high school. Using simple math, if a girl begins in the program as a 12-year-old preteen, she’ll be earning $364 each year which totals (by graduation) somewhere between $2,100 and $2,500, depending on when her birthday falls. If she makes it to graduation without getting pregnant – successful completion of the program – then College Bound Sisters doubles the amount in her account for her to use toward college expenses. That’s not chump change, and I’m not even factoring in the $5 weekly allowance for transportation.

This is a North Carolina program and is funded by a grant from that state’s Department of Health and Human Services as well as anonymous donors (according to their website). I suppose there’s an argument somewhere in here about spending tax dollars in prevention of pregnancy versus care for dependent children. However, I’m not going to delve into that muddy pit.

My interests – concerns – lie elsewhere.

As my peers and I discussed during our lunch today (because of a video on Channel One), no one paid us not to get pregnant when we were teenagers. Our mothers put the fear of God in us, and believe me, there was no money changing hands.

Why is money the only way to motivate these girls into wanting more for themselves, into wanting to make a better life than their sisters are living? Why isn’t it possible to teach them about character and values?

I’m not naïve. I teach teenagers and I know they’re having sex – much younger than you would probably believe. It’s scary as hell. But I still don’t believe bribing them is the answer. They should want to have protected sex – if they can’t or won’t abstain – because it’s the best choice for them and their future children. Using birth control should not have a paycheck attached to it.

There has to be a better way.

AWOL on the Appalachian Trail - Book Review

There’s a great little store in Gatlinburg, Tennessee, called The Day Hiker. It’s in the middle of the Parkway, in a conglomeration of stores called The Village Shops. Tori and I like to visit it each time we’re in the Smokies because they have the best assortment of hiking-oriented T-shirts. (They also stock a lot of good hiking gear.) One of our favorite tees has, as its message, “I’ve hiked the entire width of the Appalachian Trail.” We haven’t bought that one yet, but I have a feeling we will one of these days. It makes us giggle.

Laughter aside, though, hiking the AT is something I’ve wondered about for several years – basically for as long as Tori and I have been visiting the Great Smoky Mountain National Park and hiked many of its trails. We’ve bumped up against it on some of our hikes and exchanged fleeting comments like, “We should do that one of these days.” Yeah, we should. Or should we?

The AT is more than 2,170 miles long, with its end points at Springer Mountain in Georgia and Katahdin in Maine. It touches fourteen states and climbs as high as 6,625 feet at Clingmans Dome in Tennessee. According to The Appalachian Trail Conservancy, it takes 5 million footsteps and anywhere from five to seven months to complete a thru-hike. Imagine that – five to seven months basically on your own in the wilderness.

Last night I finished AWOL on the Appalachian Trail by David Miller, a man who completed a thru-hike of the AT in less than five months in 2003. He was in a job that didn’t satisfy him, so he walked away from it – with the consent of what I consider his saintly wife – and headed north from Georgia. His book about his adventure is mesmerizing. I don’t know if you have to be a fan of hiking to enjoy it or not, because I happen to be one. What I do know is that Miller does a phenomenal job of taking his readers on a virtual hike of the AT.

Through his descriptions of the trail and his willingness to share his personal thoughts, dreams, disappointments, and his longing at times for his wife and his children, he provides what has to be an incredibly accurate depiction of what it’s like to undertake a thru-hike. He encounters more than 20 bears, countless snakes, and at least one moose. His knee gives him trouble in the beginning, a blister on his foot becomes infected and costs him a few days off the trail, and he sprains his ankle, which costs him another several more “zero” days off the AT.

But he enjoys the solitude, the sights that he sees as he walks, and he allows the experience to settle inside him. Along the way he befriends many other thru-hikers and enjoys getting to know them and bumping into them again and again as they make their individual ways along the trail. Miller describes “trail magic” and is the beneficiary of it many times along the trail. Now that I understand what it is, I’m going to be sure and pack some extra goodies in our cooler when we head out again to Newfound Gap or Clingmans Dome. Maybe we’ll get to meet and talk to one of these intriguing people who commit themselves to this endeavor.

As for me, I don’t know if I could ever be a true thru-hiker. I don’t know if I could really cut myself off from my family – my life – for that long. I don’t know if I could get used to going for days and days without a shower. But I’d like to leave it open as a possibility. Maybe I’ll be a section hiker – cut the AT into pieces and hike it over the course of a number of visits and many years. I think I could picture myself doing that.

I also know that I’m grateful the Appalachian Trail exists and that people are still dedicated to taking care of it. I’ll leave you with one of my favorite quotes from Miller’s book: “We spend an inordinate amount of time indoors, and the physical confinement limits the metaphorical bubble of our aspirations. Large rooms, like the vaulted interior of a church, are uplifting. Outdoors, we are free to reach for the sky.”

I intend to keep reaching.

I like my Kindle - What's up with that?

My husband dragged me, kicking and screaming, into the eReader era and bought me a Kindle for Christmas. When he told me about two weeks before Christmas that he'd bought me a gift I wasn't going to like when I opened it but that I would come to love it, I knew what he'd done. And, a week after opening the gift, I can tell you he was pretty much right.

If you've read my profile, or you know anything about me at all, you know that I aspire to publish a book some day. I've written two (that are now collecting dust in a box somewhere in my house), and I'm about a third of the way through my third. This newest one has a lot of promise – I have an agent that wants to read it when it's done – so believe me, I want people to continue to buy traditionally-bound books. I want to walk into a bookstore and see my book on a shelf for sale.

But it's more than this narcissistic side of me that was reticent to try an eReader. I'm a book lover. I like to have them around. I like to see them on my shelves – old friends that I loved spending time with and may visit again and new ones that I can't wait to get to know. I like their weight in my hands, turning pages in anticipation of what will happen next. That part of me won't go away and won't stop buying books. (In fact, I bought two over Christmas break – Joe's Hill's 20th CENTURY GHOSTS, and Christopher Moore's FOOL: A NOVEL.)

In addition to those two trade paperbacks, though, I also bought three eBooks: MOONLIGHT MILE by Dennis Lehane, AWOL ON THE APPALACHIAN TRAIL by David Miller, and OLIVE KITTERIDGE by Elizabeth Strout. MOONLIGHT MILE was the first one I tried on my Kindle, and I read it in a few days over break (review forthcoming). At first, the device felt like an alien in my hands. My memories, however, locked on quickly to the continuation of the Amanda McCready story – I had missed Patrick and Angie tremendously – so that part of the experience felt familiar and good. But what was this piece of hardware in my hands? What was up with turning pages by clicking a button? It was truly a strange experience, reading with my Kindle. And then, without even my own realization, it wasn't anymore.

Somewhere between learning that Patrick and Angie now have a daughter and that Amanda McCready went missing again, (remember – review forthcoming) I forgot that I was reading with a Kindle and simply READ. The device became insignificant in terms of enjoying the book. I was reading a good book, and, as usual with a good book, I got lost in the story, the characters came alive, and I sighed when it was over, just as I would have if I had been holding a book in my hands. I wanted more, but even the Kindle couldn't do that kind of magic for me.

When it's all said and done, really, isn't that what we as authors and readers hope for – a story that leaves the audience wanting just a little bit more? So, I'm going to keep writing and just count myself blessed if I ever have to wonder which format of my book will sell best - the electronic one, or the hardback. I doubt that I'll care.

Celebrating Tori's 17th Birthday

In a few days – three, to be exact – I get to celebrate my daughter’s seventeenth birthday. I don’t know where the time has gone. I can’t believe that seventeen years ago I could still feel her kick inside me. Seventeen years – it sounds like such a long time and yet it feels like yesterday.

I remember her as that tiny baby who didn’t even fill my arms when we brought her home. I remember her as a toddler running through my parents’ house , walking underneath their kitchen table without needing to stoop to do so, sitting in my dad’s recliner with him as he ever-so-patiently taught her her colors and how to write her name, and I remember her playing in the yard with my mom as Mom tended her flowers.

Then she went to school. I can still see her standing outside the school door, the first day of kindergarten, her face pressed up to the glass, hands beside her head, as she peered in, trying to see what lay before her on that monumental day.

Tori’s life has filled mine with more laughter and love than I have the capacity to convey. I love being her mom, sharing her life, more than I can tell you. I lament, sometimes, how fast the years seem to go. It won’t be long, now, before she’ll be out on her own, at college, really, truly making her own way. It will be here before I can blink.

I know that anyone reading this who is a parent can relate to what I’m saying. The love we have for our children is like no other love in the world. I try to remind myself to hug Tori as often I can, to tell her that I love her whenever I’m thinking it, because we all know that we never know what lies ahead through the next door, or down the next mile of the highway.

Two days ago, two young women from our town were in a horrible car accident. One of them, a freshman in college, died. The other, a junior in Tori’s class, is still in the hospital, but she will recover – physically – from her injuries. We pray that God will help her recover completely. No one could have predicted this tragedy. I’m sure that neither set of parents, when they said goodbye to their daughter that day before the wreck, knew what the day would hold for them.

Ali’s parents will never plan another birthday party for their daughter, as Tori and I have been doing these last couple days. The pictures and memories they have of Ali are all they will ever have, and my heart breaks for them and all they have lost.

God truly blessed me when he gave Tori to me. I pray every day that He will guide me and help me do the best job I can with her, and that He will always be with her, no matter what. Because I can’t be. Because really sad things happen when you least expect them. Because if God is with us, we are never truly lost.

I am grateful for every single hour I get to spend with my daughter, and I’m excited about the rest of her life, about seeing what she does with it, who she is going to become. She’s going to do great things because that’s who she is, and she makes me so proud.

When Tori told me today, all excited about her upcoming party, “I love my birthday!” all I could do was hug her and say, “Me too.”