Home     Table Of Contents     Living with COPD     COPD News     Subscribe     About Us     Contact Us

EFFORTS — PO Box 20241
Kansas City, MO 64195–0241
Ph: 1–866–END–COPD
The information on (or referenced by) the EFFORTS’ website and discussion lists is not intended or implied to be a substitute for the professional medical advice of your own healthcare providers.

As a patient advocacy group, we rely on your contributions/donations to maintain the mail list group, this website, and help board members attend conferences and to increase our participation in research.

This is a report of the National Heart, Lung and Blood Institute’s Public Interest Organization Meeting held on June 11-12, 2012 in Washington, DC. Karen Deitemeyer attended, representing EFFORTS.

Monday Evening, Keynote Address – Dr.Lawrence Tabak, Principal Deputy Director, NIH

NIH Update:  The public and even some elected officials do not understand that the NIH funds most of the University and Research Group research.  ($25.7 Billion dollars) Only $5.2 Billion is spent by the NIH.  In 1978 30-40% of grant applications were funded – today only 15-20% are funded, due to lack of money. Many very important and good grant applications are not getting funded!!  The NIH cannot lobby, but we can – we need to be vocal.

Grants are on the average 4 years in length (new researcher may be allowed to have a grant for 5 years, if deemed necessary)

Small business grant funds are congressionally mandated – if no one applies and the funds are not awarded, the money goes back to the Treasury. NIH is working to encourage small businesses to apply.

Diversity – not enough Latinos, American Indians, Blacks, etc. are represented in either the research employees at the NIH or in grants funded by NIH. NIH is trying to reach out to minority students early in life to encourage them to go into the sciences

Why Research Matters:

Research matters – as an example, cardio death rates have fallen; HIV patients -with therapy patients can now live to 70+; there are increased survival rates for breast, cervical and colon cancer.

Each 1% of the population cured saves $500 Billion in health care dollars.

NIH research supports 488,000 jobs at 3,000 institutes. Wages and salaries are $84 Billion. Creates $68 Billion in new economic activity that employs 1 million US citizens. And because of research we export $90 billion in goods and services.

NCATS (National Center for Advancing Translational Sciences--http://ncats.nih.gov)

\ Since 1987 science has discovered 4,500 diseases or conditions where we know what’s going on. But – only 250 of those have any kind of therapy. Translational Sciences is filling in the gap.

From drug discovery to pre-clinical trials to clinical trials to FDA review takes 13+ years. And because of costs, we are spending more and getting less results. *****“Due to the multidimensional complexity, limited understanding of the underlying science, and resulting high failure and cost in this middle zone, it is sometimes called the Valley of Death,and most product ideas never emerge from it. Many of the processes in this zone have been performed in much the same way for a decade or more, with little innovation or systematic study of the reasons for success or failure.NIH recognizes that the process for translating scientific discoveries into new tools and treatments is thus ripe for innovation”************

In the past 40 years - 153 new drugs and vaccines found with new indications.

NIH and pharmaceuticals such as Astro-Zeneca, Eli Lilly, Pfizer, etc will be working together to find new ways to use some 200 old drugs that have already been approved.

Each Institute under the NIH will continue their own research, but NCATS will help speed things up through forging new relationships with PharMa, the FDA, Advocacy groups and non-profits.

Tuesday’s opening remarks were from Dr. Carl Roth, Acting Deputy Director, NLHBI and Dr. Gary Gibbons, Director-designate, NHLBI

We were shown a video clip from the Steven Colbert program http://www.colbertnation.com/the-colbert-report-videos/414123/may-10-2012/francis-collins

Dr. Francis Collins, Director of the NIH, was a guest, promoting the HBO 4-part series “The Weight of The Nation”.    (Bringing together the nation’s leading research institutions, THE WEIGHT OF THE NATION is a presentation of HBO and the Institute of Medicine (IOM), in association with the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH), and in partnership with the Michael & Susan Dell Foundation and Kaiser Permanente)

Even if you do not have HBO, you can view the series by going here: http://theweightofthenation.hbo.com/

The Colbert video had us all laughing, but obesity is a real problem and one of the afternoon’s sessions was about obesity research. (Unfortunately, due to the way that my flight home was scheduled, I was not able to stay for that session)

We were urged to participate in clinical trials and to refer our members to “NIH Clinical Research and You”, which has explanations of the importance of clinical trials, as well as a link to trials: http://www.nih.gov/health/clinicaltrials

There was discussion that all the NIH Institutes have shared interests – how to increase knowledge of the NIH? Many people do not realize that they all fall under the NIH. There is lots of cross-institution collaboration – i.e. with lung cancer & COPD.

Brief mention of PICORI (Patient Centered Outcomes Research Institute) and that it’s separate – not affiliated with NIH.  http://www.pcori.org/

Discussion of concern about asthma meds going over the counter.

Question asked about indirect cost vs direct cost of research – on average 2/3 of total award goes to research and 1/3 goes to the institution. (NIH does not set that rate)

Entering the Era of Genomic Medicine: Opportunities and Challenges – Dr. Eric Green, Director, National Human Genome Research Institute, NIH

In 2003 results were better than expected from the Genome Project. He talked about the 5 domains of genetic research, and when most of the discoveries were made:

1)       The structure of Genomes – the Human Genomic Project 1990-2003

2)       The biology of Genomes – 2004 – 2010

3)       Biology of Disease – 2004-2010

4)       Advancing the Science of Medicine – ongoing now

5)       Researching and Demonstrating how to Improve the Effectiveness of Health Care – ongoing now

With structure plus biology they can understand the sequence of the genomic code.  They know that the protein encoding sequences are approx. 1.7% and 3.5% are the on-off switching codes. They know that epigenetics (non-genetic factors) can cause the organism’s genes to behave differently.

There are 6 billion genomes in each person. 99.9% of them are identical, so that leaves 3 to 5 million differences.  He referred us to the Nature 2010 article“1000 Genomes Project”: http://www.nature.com/news/2010/101027/full/news.2010.567.html

Almost every disease has a genetic influence and there are two types:

1)  Rare, Simple, Monogenetic, Mendelian diseases have a single mutation (3,500 identified, but there are another 3700 for which the gene has not yet been identified) http://mendelian.org/

2) Common, Complex, Multi-genetic, Non-Mendelian

Genome-wide association studies (GWAS) are used to identify common genetic factors that influence health and disease. In January 2008, the NIH implemented a policy for the sharing of data obtained in NIH-supported or conducted GWAS. – The COPD Gene study is one.

The first genomic sequencing took years and $1Billion dollars – they would like to see the cost get down to about $1,000. Right now it takes about 2 days and a cost of $4,000. New technology on the way to smear blood on a small device that is inserted in a computer and will immediately sequence genes.

NIH needs better ways to analyze data – right now there is simply too much data, and not good enough ways to analyze it. Millions of people will be sequenced worldwide.

Ethical questions about sequencing infants – what if something is found that was NOT what the parents consented to have the infant sequenced for?

Also – what do they do if patient (for example) signs up for a cancer gene study and they find something else that the patient didn’t know to ask about – does the patient want to know?

Nature 2012 article “Sequencing Set to Alter Clinical Landscape” http://www.nature.com/news/sequencing-set-to-alter-clinical-landscape-1.10032

He ended with a quote:  “A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty”.  Winston Churchill

Scientific Presentation: The Microbiome – Dr. Stanley Hazen, Cleveland Clinic Foundation

(This definitely was the most complicated presentation – his slides were predominately filled with scientific equations and I couldn’t write fast enough to get it all, but I tried.  I tried to take pictures, but they did not turn out well at all L)  Aha!! I just found a link to his slides – they are not in order, but they all seem to be here: 


His opening statement was that the DNA within human bodies contains 10% human DNA and 90% DNA from bugs!!  Yep – that statement gave me the creeps!!

Dr. Hazen’s talk was about Gut Flora – the “Obese Microbiome”

Why do obese mice extract more calories than lean mice when fed the same exact meal?  Turns out it’s due to the amount of gut flora in their intestines.  The microbiome (gut flora) turns choline into alcohol and then it turns into something called TMAO (trimethylamine oxide).

They found that a high-choline diet when gut flora is present = more cholesterol.  If the amount of gut flora is reduced, then there is less cholesterol formation and less obesity. So, the next step is for researchers to determine if gut flora can be reduced (safely), to cause less obesity and less atherosclerosis and less heart disease.

Agriculture puts TMAO in animal feed to make them grow faster. We have no idea of what the long-run health effects will be.  Eventually they may be able to manipulate Gut Flora to treat heart disease.

He also talked about Carnitine. It’s a compound required for the transport of fatty acids during the breakdown of lipids (fats) for metabolic energy. It is also related to obesity and atherosclerosis – too much increases the risk of both.   Carnitine is found in red meat, but not in white meat.  It is also added to other food products – i.e.  there is as much carnitine in 3 Monster Energy drinks as is in 13 ½ Porterhouse steaks!! Starbucks energy drinks contain as much as is in 3 ½ Porterhouse steaks. Carnitine is added because it tastes good and gives a boost of energy.We need to be aware of it and try to avoid any products that have added carnitine or L-carnitine. Dr. Hazen said he hasn’t stopped eating red meat, but that he eats it less often, and in smaller servings so that most of the carnitine is absorbed in the small bowel before it reaches the large bowel and forms TMAO.

I had to leave at the end of his presentation to catch the shuttle van to the airport, so unfortunately I had to miss the panel discussion on Obesity Research and PIO Perspectives.