Are Gene Patents a Good Thing??

Report finds gene patents prevent competition, don’t promote advancement

BY CONNIE KARAMBELAS

A report published Wednesday by Duke University researchers concluded that gene patents and exclusive licensing do more to deter competition in the gene testing market than they do to further the development of new technologies for measuring the risk of disease.

Dr. Robert Cook-Deegan, director of Duke University's Center for Genome Ethics, Law & Policy in Durham, N.C., said, “It's notable that a gene linked to cystic fibrosis is not subject to an exclusive license, yet there is now a vibrant market for tests to identify carriers of the cystic fibrosis gene. This suggests the problem is not patents, per se, but how they are being licensed, particularly by universities.”

Published in the journal Genetics in Medicine, the study’s results are the product of eight case studies on 10 clinical conditions, including cystic fibrosis, hearing loss, breast cancer, colon cancer, Tay-Sachs disease and Alzheimer’s disease. Researchers from the Duke Institute of Genome Sciences and Policy and Duke's Center for Public Genomics conducted the research.

The question of patening genes has been in the news. Last month, a federal judge in New York ruled that patents should never have been granted genes to test for break cancer.

More than 20 percent of the human genome has already been patented by various scientists, academics, and companies. This translates into about 4,000 genes, the Anmerican Civil Liberties Union noted in its case against Myriad Genetics and Laboratories in Salt Lake City, Utah.

Duke researchers found that most of the scientists and researchers they interviewed, specifically pertaining to Alzheimer’s disease, were ambivalent when it came to patenting, and none attributed the races to trace the genetic origins of the disease to patents.

“The races were driven by wanting priority of scientific discovery, prestige, and scientific credit, and the ability to secure funding for additional research based on scientific achievement,” the researchers reported.

While this was reported for Alzheimer’s, the study outlines that the same is primarily true for the other diseases researched. Gene patents did nothing to promote innovation in terms of new technologies or methods for determining disease risk, the Duke researchers reported.

“If patents added ‘the fuel of interest to the fire of genius,’ in Abraham Lincoln’s famous phrase, it was here at best a tiny pile of kindling at the outer margin of a large conflagration,” the researchers wrote.

There are additional problems with exclusivity according to Dr. James P. Evans, a clinical professor in the genetics department at the University of North Carolina – Chapel Hill (N.C.), who wrote “Putting patients before patents,” a commentary on the case studies.

A patent holder exclusively licensing a laboratory to conduct the tests for a certain disease risk results in an “inability to obtain second-opinion testing and concerns over quality, given that the most robust means of quality assurance are not available in the context of a single provider,” he said.

When it comes to retesting, an exclusive license could make a difference, said Kevin Noonan, a patent attorney at Chicago-based McDonnel Boehnen Hulbert & Berghoff. “If I’m the exclusive licensee I can’t quibble with the person who says that yes, there is a cost that is incurred by having a patent,” he said. “There is a cost however, in not having the test in the first place.”

Evans also has another concern with exclusive licensing: Clinicians who are concerned about a certain laboratory have no alternative to choose from. This, he said, allows the laboratory, rather than the patients, to define the terms of testing.

“That’s a hypothetical,” Noonan said. If the exclusive licensee is doing the test in a certain lab and not doing it very well there is a good chance that people will sue over the incorrect test results and the lab won’t stay in business for very long, he said.

“There are provisions in the law, for tests coming from university labs, where the government can step in and grant a non-exclusive license to another lab. If there is evidence that the lab is doing their job poorly then patients can report this and the exclusive licensee would have to accept a sublicense to another lab,” he said.

See original article at http://news.medill.northwestern.edu/chicago/news.aspx?id=162971

My First Ever (CF Related) Trip to Albany

If you're reading this, then that probably means that I'm already in the air and on my way to Albany. I'm very fortunate to have been invited to speak on Saturday at a CF Education day being put on by the CF clinic there in Albany. I was actually recommended by a fellow cyster and CysticLife member, Ms. Goodrich, and I'm very excited that they took her up on the recommendation.

I have been invited to speak at many events through out the years, but this will be the first time east of the Mississippi River :) I generally speak at events thrown by people trying to raise money for the CFF, respiratory colleges and other venues- but it has been mostly isolated to Arizona. So needless to say, I'm excited about this opportunity. I've even, and by I, I mean Mandi, put together a power point slide show to go along with my talk. I'm getting all official on them :) I usually just shoot from the hip and whatever comes out, comes out. But I figured since they're flying me out there, I should step it up a notch and make sure they get their money's worth!!

Mandi and I worked on a presentation called "The ABC's of Cystic Fibrosis". I'll have to translate the speech to blog form sometime here in the near future, but if you read the blog, you can probably guess what it's about: Attitude. Balance. Commitment.

I sure hope that all goes well and that the participants of this year's event can at least take a little bit away from this presentation. If you're in the Albany area, I would love to see you, otherwise, wish me luck!!!

Lessons for a Respiratory Therapist

Every semester I am lucky enough to be asked to speak to the next class of up and coming respiratory therapists. I really enjoy speaking with them because it gives me a chance to give them a little insight into the lives of those they will be caring for. We were able to record much of my talk, but until we have that video up, I just wanted to list my most important points that I always hope the students take away from me after blabbering to them for 90 minutes.

I love my life. This is probably the single most important thing that I want them to learn about me personally.

If they're choosing this field for a paycheck, get out now!! This job requires that you care about people. If you're number one goal is to make money and not take care of the patient, I'm afraid you should choose another field.

As much as they might not want to be at work some days, we want to be there even less. Let's face it, we CFers are more or less forced to be there, we don't feel good and we don't get paid.

We really want to get out of the Hole and we're counting on you helping us to do so. We'd like to spend as little time in the joint as possible, please be a positive contributor towards that goal.

For many of us, you're like another part of our family. You don't always need to treat me like a patient. By now, I probably know a lot about you and you know a lot about me. Let's act like it.

If the students I talked to today can really grasp those points, I have no doubt that they will love their job and excel at it!! It's so important that we have talented and committed RT's working their butts off and helping us get out of the Hole in as little time as possible.

There's no doubt that some of these students will play a vital role in my hospital routine in the future...I just hope they were listening :)

At Home Workouts

Mandi and I have started a "new" workout lately that has gone really well! I guess I shouldn't say that the workout is new as much as it is the place that is new. After Josh (her brother) got married it freed up a space in her parent's garage that Mandi's dad turned into a little gym. When I say little I mean it. We have a bench, a barbell and a set of dumbbells amongst all of the boxes, decor and tools. I'm certainly not complaining however as it is more than sufficient for just Mandi and I.

Today we worked out back and bicep, following tricep and chest the day before. We certainly have to become a little creative to keep the workouts fresh and target the proper groups of muscle, but so far, so good. In between sets today I did sets of "jumps" by picking a spot on the wall and repeatedly jumping as fast as I could while hitting the spot. Talk about a good lung workout! I suppose it's very similar to the trampoline workout that doctors prescribe for CFers in other countries. After every set I was coughing up a ton of mucus that I felt coming from way down deep.

Point of all this- I realize that not everyone can set up a mini gym in their house, however, there is always stuff that we can use to workout at home. You can first just start with you. Push ups, jumps, wall sits, sit-ups, these are just a handful of exercises that you can do at home that require nothing but yourself. If you're looking to add some weights to the mix, all it takes is some empty milk jugs of all different sizes filled with sand. Do that and you've got your very own set of dumbbells!

I've said this MANY times before on this blog, but I'll say it again, doing SOMETHING is always better than doing NOTHING. It doesn't matter if it's 10 random jumping jacks in the middle of the day. You could at least say that was more than you did the day before! Key is, push yourself to do at least 11 jumping jacks the next day. The name of the game is to be always improving. If you have that mentality everyday when you first get out of bed, then the sky is the limit.

We Called, You Answered.

We made the phone call and you guys answered in a BIG way!! If you don't know what I'm referring to, let me give you the inside scoop...

At CysticLife yesterday we conducted a survey for a big pharma in order to raise money for the CF community. They agreed to pay us 100 dollars per survey, but with a 100 survey limit. We were given two weeks to gather the surveys, but we made it our goal to have them completed in 24 hours. Never will I underestimate you guys again! Anyone want to guess how long it took the community to knock out the 100 survey cap? Anyone? Alright, I'll just tell you then...31 MINUTES! Read that again, 31 minutes, as in 1 minute past half of an hour. I couldn't believe it and the pharma company was, and I quote, "speechless". This was ALL ABOUT you guys! The way that this community responds to the call is simply amazing.

When starting CysticLife this was certainly something we had in mind. I used to dream about an "army of fundraisers". I really think this survey opportunity was just the beginning. We're going to continue to think of creative and fun ways that we can raise money for the CF community. You may be thinking right now, well where is the money going? To be honest, we don't exactly know yet, but I can tell you this: We will spend it on whatever we think will make a direct and immediate impact on members of the CF community. We've thrown a couple of things out that have gotten a good response, but I thought I'd run them by you guys too. We're thinking stuff like; gym memberships, personal trainers, better compressors, travel compressors, Wii Fit, etc. Have any ideas that you'd like to add to the mix??

Anyway, that's not really what this blog is about. It's mainly about me bragging about how great you guys are. We all got together and really showed these guys the power of social media and an engaged and active community!! I really think that this whole experience will give us more opportunities down the road and I can't wait to see what's next! Again, I can't thank you enough.

Stay active. Stay engaged. And let's all do this together :)

I Have a Confession...

So I have a confession...we've been keeping you (a little) in the dark. As you all know, we've been house hunting for the last 4 months. Well after several houses, several offers, and several let downs, we FINALLY found the PERFECT house for us, put an offer in, and....let me back up a bit.

So two weeks ago, Ronnie, my mom (who was still in town from Josh and Chrissy's wedding), our trusty real estate agent (a good friend of ours, Mike) and I all went to look at a house that had come onto the market that morning. We were the first ones through. We walked in and instantly fell in love with it. It was exactly what we wanted: good-sized, big enough to grow a family into, a great yard, pretty, comfy, inviting, and in our favorite neighborhood. We spent about an hour in it and KNEW the house was for us. We left and made an offer on it that day. After waiting 24 LONG hours, we heard back with a counter offer. We went back and forth a few times, and finally, last Friday, they accepted our offer. Now, I wanted to shout it from the roof tops (and obviously wanted to write my Mandi Monday about it last week) BUT Ronnie told me I had to wait at least until it passed inspection. So last Monday we went down and stroked the check to open escrow and then headed over to the house for the inspection. We were able to spend the whole time with the inspector (which was good because he taught us A LOT) and when it was all said and done he said it was a "peach".

So it's looking like this is ACTUALLY going to be our first place. We are so excited. We just have to get officially approved for our mortgage (should be ok because we were already pre-approved) and we plan to close on April 30th (YUP, ONLY 18 MORE DAYS). I can't wait. Ronnie will conveniently be in the Hole getting a tune up when we close, so it will be my mom (who will be back in town at that point) and I painting and getting the first of our belongings moved in. As you can imagine, I've spent hours online looking at decorating tips, ideas, and inspiration. Once we are all settled in, we will take a few photos to share...but we'll wait for now, just to keep you coming back for more :)

Anywhooo, my apologies for keeping you all in the dark on this one, but Ronnie told me I should "manage my expectations" until it passed inspection. He didn't want me letting the cat out of the bag, getting MORE excited, only to not end up with the house. I will do my best not to lie to you like that in the future ;-)

Dreams Come True

Kameren Kuhn's dream to swim with ocean animals becomes a reality

Eight-year-old Kameren Kuhn loves swimming and aquatic animals.

His wish to combine the two turned into a once-in-a-lifetime adventure for his family thanks to the Make-A-Wish Foundation of Illinois.

"It was just so awesome," said Kameren, who was diagnosed with cystic fibrosis at the age of 1.

The foundation provided an all-expenses-paid vacation last month for Kameren and his family -- his parents Wendy and Rob, brother Kyle and sister Kaylee -- to the Atlantis Resort on Paradise Island in the Bahamas.

"To have all of Kameren's wishes, all the things he loves to do all wrapped up within one trip was really a gift," Wendy Kuhn said. "It was really a wonderful experience, something I know he's going to remember for his entire life."

While at Atlantis, the Kuhns swam with the dolphins and sea lions.

"The dolphins you got to kiss and hug," Kameren said. "We had like a 500-pound sea lion that came up and kicked you, knocked you over. I liked the sea lions."

The resort's indoor water park featured "humongous" slides including one through a shark tank that Kameren couldn't wait to try.

"It's not the sharks you're afraid of. It's going straight down. You go so fast," Kameren said. "I'm not even scared of sharks."

Not much seems to scare Kameren who loves to play sports, ride his bike and says math is his favorite subject in his third grade classroom at Greenfield Elementary School.

He's even matter-of-fact about his disease.

"Cystic fibrosis is when your lungs don't work as well as other people's," he said, but "I usually forget about it."

So does the rest of the family -- to a point.

"We don't let his disease rule our life," Wendy Kuhn said. "We know it's there. We take care of it. It's certainly at the forefront of every day, but it doesn't determine who our family is."

Anyone who looks at Kameren now would never know anything is wrong with him, but from his birth, he was sick a lot, she said, and the family couldn't find out what was wrong. When he was diagnosed with cystic fibrosis, "it felt like I was kicked in the stomach ... but it was a blessing we found out. The sooner you know, the sooner you can treat them," she said.

A compression therapy vest that Kameren wears every day helps clear his lungs and prevent the lung infections common in CF patients.

Staying active also helps Kameren's health.

"My husband and I made a decision early on that if we were going to do something, he was going to too. We didn't say you can't (do something) because of this," Wendy Kuhn said. "A lot of parents with CF worry about them being too active, but the more active they are, the healthier they are. Running, jumping are therapy."

And Kameren plays an important role in monitoring his disease.

"He knows his limitations. He knows when he's starting to get sick. For 8 years old, he's very in tune with his body. It's sad that at 8 he should be, but it's a good thing for us," Kuhn said.

"When he was little, he told us one day that he knew God chose him out of our kids because he was the one who could handle it. It was really profound for a little boy to say that ... but it doesn't bother him. He has a different attitude. He makes it so easy for us."

Full article at http://www.whig.com/story/news/make-a-wish-041110