On the Worst Healthcare Experience of My Life
By JESS JACOBS This has been a very sad weekend for me personally, the wider health care community and for anyone who knew Jess Jacobs, who died on Saturday. She was only 29 years old, and was smart, funny, enthusiastic, and brave well beyond her years. She suffered from two very rare diseases, but was also working to push health policy forward at ONC, FDA and Aetna, and she really knew her stuff. Jess was a marvel and a rarity in more ways than one. She was #UnicornJess. (That link will take you to the twitter memorial on Sunday night, but also check out remembrances from Ted Eytan & Carly Medosch). I’m as...
Source: The Health Care Blog - August 15, 2016 Category: Consumer Health News Authors: Matthew Holt Tags: THCB #UnicornJess Hospital Care Jess Jacobs Source Type: blogs

Down the Rabbit Hole
John Ioannidis is what I would call a science critic. I don ' t mean that he ' s anti-science. On the contrary. He ' s a science critic in the same sense that a movie critic or a literary critic likes movies or books, but has something to say about which ones are better than others, and how they are composed and achieve or fail to achieve their artistic objectives.He joins colleagues incritiquing the Big Science initiatives of NIH, which has been directing more than half of its funding to genomic and stem cell research. Contrary to early expectations, it turns out that the relationship between the genome and specific disea...
Source: Stayin' Alive - August 9, 2016 Category: American Health Source Type: blogs

The death of a child is an abomination
When, aged thirteen, my best friend died of complications from sickle cell disease, her parents could not attend her funeral, or find out where she was buried. My mom explained to me that in the Yoruba culture, because parents are not expected to survive their children, it is considered an abomination for a parent to know where their child is buried. So, the young adults in the extended family attended the burial, and the older people stayed at home with the parents to console them. My grieving eleven-year-old mind interpreted the custom to mean “the death of a child is an abomination.” That thought resounded i...
Source: Kevin, M.D. - Medical Weblog - June 23, 2016 Category: Journals (General) Authors: Tags: Physician Hospital Intensive care Pediatrics Source Type: blogs

Are Priority Review Vouchers The Answer To Incentivize Drug Development? Not So Fast.
In the May issue of Health Affairs, two papers examine the potential for voucher systems to incentivize drug development in areas of unmet medical need. Co-authors Kevin Outterson and Anthony McDonnell take a look at potential exclusivity voucher programs designed to encourage development of new antibiotics, while David Ridley and Stephane Régnier analyze the effects that expansion of existing priority review voucher (PRV) programs may have on the value of PRVs as a development incentive. Ridley and Régnier’s work is of particular importance as both houses of Congress pursue a spate of legislative proposals that do mak...
Source: Health Affairs Blog - June 15, 2016 Category: Health Management Authors: Pranav Aurora, Morgan Romine and Gregory Daniel Tags: Costs and Spending Drugs and Medical Technology Featured Global Health Health Professionals Quality FDA FDAAA priority review rare diseases Source Type: blogs

Be A Champion for Clinical Trial Diversity
By: Jonca Bull, M.D. The FDA is launching a campaign to encourage minorities to participate in clinical trials for all medical conditions. The first part of the campaign will be launched on June 19, 2016, World Sickle Cell Day, observed … Continue reading → (Source: FDA Voice)
Source: FDA Voice - June 14, 2016 Category: American Health Source Type: blogs

The Economics of Medical Miracles
The Academy Health* blog presents an interesting quandary in health economics. We aren't quite there yet, but the day may come soon when it is possible to essentially cure genetic diseases like cystic fibrosis and sickle cell. That sounds great!The problem is that these are fairly rare diseases, and that the treatment would be administered only once. So, in order to recoup their research and development costs, the purveyors would have to charge enormous prices -- on the order of a million bucks a pop. That's going to make you think, "Oh, this is like those other moral dilemmas about the allocation of scarce resources. We c...
Source: Stayin' Alive - May 27, 2016 Category: American Health Source Type: blogs

Sickle Cell Anemia: An underprioritized disease?
The Sunday Boston Globe today had a front page piece by STAT's Sharon Begley that asks some challenging questions about prioritization of disease research.  Poking around the STAT site, I found that the original article was even longer and better, but between the important issues it raises, some interesting peripheral stuff and at least one gaping hole, there's plenty to discuss.Read more » (Source: Omics! Omics!)
Source: Omics! Omics! - May 21, 2016 Category: Bioinformatics Authors: Keith Robison Source Type: blogs

A Man with Sickle Cell Disease and Headache via Now@NEJM
Posted on infosnack. (Source: Kidney Notes)
Source: Kidney Notes - March 31, 2016 Category: Urology & Nephrology Authors: Joshua Schwimmer Source Type: blogs

Senate HELP Committee Continues Work on 21st Century Cures Corollary
Earlier this week, the Senate Health, Education, Labor, and Pensions (HELP) Committee held a hearing on a package of legislative measures that are targeted at facilitating medical innovation. This hearing, the second in a set of three, is the Senate's response to the House-passed 21st Century Cures Act (H.R. 6). We wrote about the first hearing, and a recap can be found here. While the second meeting featured much partisan debate and fanfare, the Committee advanced all seven medical innovation measures before them, with six passing by voice and one measure passing by roll call vote of 20-2. In opening statements, Senat...
Source: Policy and Medicine - March 22, 2016 Category: American Health Authors: Thomas Sullivan - Policy & Medicine Writing Staff Source Type: blogs

Tips to rank your match list. Here’s how this medical student did it.
As an early third year medical student, I had a few attending physicians tell me that MD stands for “make decisions.” I find myself subject to these sorts of pep talks when I answer their clinical questions with a response influenced by a high pitched vocal inflection that suggests that I’m uncertain. For example, while being pimped on the next step in managing a patient, I might have responded with a statement that morphed into a question because my fear of making a mistake betrayed the confidence I had in my training. “We should check her glucose?” or, “I think we should send her for a chest x-ray?” I’...
Source: Kevin, M.D. - Medical Weblog - February 23, 2016 Category: Journals (General) Authors: Tags: Education Medical school Source Type: blogs

The Mother of the Beast
Editor’s Note: This post is one of two pieces on the Introduction to Social Medicine and Global Health course at Harvard Medical School. Read the other piece here. By: Benjamin Oldfield, MD, a fourth-year resident in the urban health-focused combined internal medicine-pediatrics residency program at Johns Hopkins Hospital When asked about my medical school experience, I like to map my memories onto the arc of an epic poem. Both are lengthy, traversing vast ground, formative—the allegory seems to fit. First-year began in medias res, in the middle of things, as epics tend to do. Like the horrific storm at the beginni...
Source: Academic Medicine Blog - January 26, 2016 Category: Universities & Medical Training Authors: Guest Author Tags: Featured Trainee Perspective global health health disparities patient centered care patient's story social determinants of health social history social medicine Source Type: blogs

LITFL Review – Best of 2015
Welcome to the Best of 2015 LITFL Review! Your regular and reliable source for the highest highlights, sneakiest sneak peeks and loudest shout-outs from the webbed world of emergency medicine and critical care. Each week the LITFL team casts the spotlight on the blogosphere’s best and brightest and deliver a bite-sized chuck of FOAM. The Most Fair Dinkum Ripper Beauts of the Year SMACC Podcast: Crack the Chest Get Crucified (John Hinds) John’s talk from the opening plenary at SMACC Chicago had a furious battle with David Newman’s talk for the number one spot. Both were clear front runners given the shear numb...
Source: Life in the Fast Lane - January 8, 2016 Category: Emergency Medicine Authors: Anand Swaminathan Tags: Education LITFL review Source Type: blogs

My first two weeks
So, in my first two weeks as a Clinical Librarian, I have:Sent an email to introduce myself to some of the members of my departments.   I did this on the first Friday, and had two instant replies, one asking for articles, and one saying hello.   By the next Wednesday (the next work day) I had had four more, including one request for a literature search, and two mentioning the possibility of going to a meeting in that department.  I have also:Visited the excellent Cancer Information Centre, getting two contacts to follow up;Done a literature search related to sickle cell anaemia;And another rel...
Source: Browsing - December 18, 2015 Category: Databases & Libraries Tags: clinical librarianship NHS Source Type: blogs

Undiscussed issues in the debate over human germline genetic modification
Jon Holmlund’s 12/10 post on the use of somatic cell gene modification to treat sickle cell disease and two recent articles in The Telegraph have me thinking about human germline genetic modification again. One of the points in Jon’s post was that somatic cell genetic modification does not have the ethical problems of germ line genetic modification. The Telegraph articles discuss a group that has... // Read More » (Source: blog.bioethics.net)
Source: blog.bioethics.net - December 16, 2015 Category: Medical Ethics Authors: Steve Phillips Tags: Genetics Health Care bioethics biotechnology Consent / Research reproduction syndicated Source Type: blogs

Ethical Human Gene Editing for Sickle Cell Anemia
The biggest ethical worry about human gene editing is that it will be used to make long-lasting, heritable changes at the embryo stage or on germ (sperm or egg) cells.  Posts earlier this year have asked whether we should envision a scenario in which human germline gene editing is accepted in a limited number of cases, with the treatment of sickle cell anemia being proposed... // Read More » (Source: blog.bioethics.net)
Source: blog.bioethics.net - December 11, 2015 Category: Medical Ethics Authors: Jon Holmlund Tags: Genetics Health Care Stem Cells bioethics biotechnology syndicated Source Type: blogs