The JDRF has plowed more than $1.3 billion into research geared towards finding a cure for type 1 diabetes, which is an autoimmune disease that attacks the pancrease, leaving patients reliant on insulin injections for the rest of their lives.

As with other diseases, however, it’s been difficult to find enough patients for all the ongoing trials.  JDRF alone is funding about 40 trials at this time.  The new site aims to encourage patients to participate in trials and make it easier for them to do so.

After registering at the site, patients can:

• Search for trials in a particular region or within a state
• Sort trials by city or state name to learn more about the different trial opportunities available nearby

Users can save their “favorite” trial descriptions and then compare them side by side and print them out or email them to share with family, friends, and their physicians. They can also get updates as new trials are added to the National Institute’s of Health’s database.

JDRF is a renowned organization and the charity that spends the most on type 1 diabetes research.  The site, which was launched at the end of last month, was created for the JDRF by IT company VisionTree.

Diabetics can also find clinical trials at DiabeticConnect, a private endeavor.

I’ve already said I think it’s good news.  Too few people realize that decisions at the end-of-life are often a trade off:  For a longer life, you can pay with a great deal of agony.  That’s a totally personal decision, but one you should discuss with your doctor and family to make sure your wishes are followed.

Apparently, all the accusations about death panels and euthanasia are at least bringing more attention to this question, as Kaiser Health News reports:  “Jon Radulovic, vice president for communications at the National Hospice and Palliative Care Organization, says the debate dispute “is providing the end-of-life care community with an opportunity to talk about what good care is and the services that are available.”

For anyone who is still wondering what this provision (section 1233) says, Kaiser also has a great piece describing the provision along with an excerpt.

Until now, they explain, there was no specific law stating that Medicare should reimburse doctors for end-of-life counseling. “Currently, physicians generally classify the conversations under a funding code covering counseling and discussion of issues such as marital problems and depression associated with a job loss…”

The new House bill  “requires Medicare reimburse doctors and other practitioners for consultations covering a range of information, including information about living wills and power of attorney.”

So, doctors have already been doing the counseling, and now it would just be eaiser to get paid for it and they’d probably make more money doing it.  Some people think that all life-saving procedures should always be done, but clearly others do not agree.  Once you sit down with a medical professional and go through a health care proxy or living will, you might be shocked at what would be in store for you if you don’t plan ahead.

The most important page is this one, which lists warning signs and the national suicide prevention hotline:  1-800-273-TALK (8255)

The VA has been accused of suppressing data about suicides among the returning troops, and the Army was accused of pressuring it’s medical personal to refrain from diagnosing Post Traumatic Stress Disorder (PTSD), which can be very costly to treat.

According to a recent press release from the Army: “In January, the Army implemented an Army-wide effort to combat the rise of suicide in its ranks. The Army mandated a suicide prevention stand-down that involved 1.1 million soldier; established a Suicide Prevention Task Force; has made dozens of improvements to Army Policies, procedures and resouces; and recruited additional psychological and behavioral health counselors.”

Francis Collins

According to a White House Press release, Obama said: “The National Institutes of Health stands as a model when it comes to science and research.  My administration is committed to promoting scientific integrity and pioneering scientific research and I am confident that Dr. Francis Collins will lead the NIH to achieve these goals. Dr. Collins is one of the top scientists in the world, and his groundbreaking work has changed the very ways we consider our health and examine disease.  I look forward to working with him in the months and years ahead.”

The nomination has drawn kudos from patient advocates, who see Collins as a strong ally.  “This is a critical time for the science associated with health,” said Sharon Terry, president and chief executive officer of Genetic Alliance, an advocacy group that represents thousands of genetic disease organizations. “We must focus the incredible resources, discovery and intelligence of the NIH on systemic solutions. We have a phenomenal palate from which to paint, and now we need to start creating masterpieces. Dr. Collins is the right ‘artist’ for this task.”

Former director of National Human Genome Research Institute (NHGRI), Collins led the Institute and an international team to sequence the human genome in a high profile race with Celera, a private company. Collins is best known for that race and its dramatic finish, where “a tie” was declared between the two group.  However, for the rest of his stint at NHGRI, Collins focused on helping patients get value from all that genomic data, which cost $2.7 billion to generate.  In its press release, the  Genetic Alliance notes that “As NHGRI director, [Collins] made great strides in putting that [genomic] information to work by creating many teams and projects that not only elucidated the meaning of the raw data, but also transformed systems and paradigms associated with biomedical research. Throughout all of this, Collins kept individuals, families and communities central to the work, focusing on their needs as the driver for scientific discovery”

Collins also has a longstanding interest in the interface between science and faith.  His book “The Language of God: A Scientist Presents Evidence for Belief,” was a New York Times bestseller.  He also has a new book coming out in 2010: “The Language of Life: DNA and the Revolution in Personalized Medicine”. Collins received a B.S. in Chemistry from the University of Virginia, a Ph.D. in Physical Chemistry from Yale University, and an M.D. with Honors from the University of North Carolina. He has been elected to the Institute of Medicine and the National Academy of Sciences, and was awarded the Presidential Medal of Freedom in November 2007.

A recent article in Mass High Tech describes how the Cystic Fibrosis Foundation (CFF) ended up having to find a new partner and put an additional $3 million into a project after Altus Pharmaceuticals stopped working on a drug candidate CFF was helping to fund.  The drug was being tested in a phase III clinical trial, which is usually the last step before a company can ask the Food and Drug Administration to approve the medication for sale.  But Altus was facing a financial crisis and could not afford to keep developing all the drugs in its pipeline. Altus abandoned the potential cystic fibrosis treatment because that disease is relatively rare — affecting just 30,000 people nationwide. The company’s attention is now focused on a drug that treats growth deficiency, which has a much larger potential market.Eventually, the CFF did find a new partner — Alnara Pharmaceuticals, and the phase III trial back on track. Liprotamase, as the drug is now being called, is a new type of pancreatic enzyme that could make life much easier and more comfortable for the 90% of cystic fibrosis patients who suffer from low levels of such enzymes.

Other foundations that have major collaborations with biotech companies include the Michael J. Fox Foundation for Parkinson’s Disease Resarch and the Juvenile Diabetes Research Foundation.  The MHT article quotes Peter Lomedico, the jead of the JDRF, as saying that his groups is looking much more closely at companies’ financial health before doing deals with them:  “There have been times we’ve had to walk away from some really good science, because the company is just too vulnerable financially.”

I became aware of this great tool a couple of weeks ago, when I emailed Julie (not her real name) a fellow volunteer at a local animal rescue group I belong too.  Two seconds after I sent the email to Julie I received an email back telling me that she would not be able to use email in the near future, and I could find out what happened to her by visiting her CaringBridge site.

There, I learned by reading her story that she had suffered a bleed in her brain and was in the ICU of a local hospital.  Since then, Julie has been moved to a rehabilitation hospital, and I’ve received daily updates written by a family member who is overseeing her care.  Julie’s family has used her personalized CaringBridge page not only to tell her many friends what has happened, but also to help take care of the many details that have arisen because of her condition, to organize visits by friends and family, and to advise people on how their visit to her bedside can do the most good.  Her page has received over 1000 hits in just under a month.  It’s likely that many of the people who are following her progress would have completely lost track of her without the website.

It’s not just convenient, I think it’s fundamental.  When my father had cancer 20 years ago, I remember how every set back he experienced left all of us feeling completely drained.  Having to call everyone to update them was an added stress.  I would have paid a premium for a service like CaringBridge, but the service is completely free.  Founded and led by Sona Mehring, CaringBridge a nonprofit that raises money through events like its Act of Kindness campaign.  The group estimates that they are helping one in 85 “hurting families” at this time, and has the goal of helping 500,000.

Despite the fact that it’s free, the site is remarkably simple to use and elegantly designed.  It really only takes minutes to set up a site.  Each webpage you create includes:

• Patient care journal to update family and friends
• Guestbook for messages of love
• Photo gallery
• Free online support for using the service

Users can also create a CaringBook, filled with the comments left on the patient’s webpage, at cost.

I urge you to spread the word about this wonderful tool, and donate to CaringBridge if you can. When tragedy strikes, a patient’s network of friends and family are a vital resource.  Helping all those people stay informed and involved is one of the best things you can do for anyone in such a situation.