Rare Disease Day Has No Friend in ICER’s Steve Pearson
The person seeking to limit drug spending believes there are too many orphan drugs (Source: drugwonks.com Blog)
Source: drugwonks.com Blog - February 29, 2016 Category: Pharmaceuticals Source Type: blogs
Narrative Matters: On Our Reading List
Editor’s note: “Narrative Matters: On Our Reading List” is a monthly roundup where we share some of the most compelling health care narratives driving the news and conversation in recent weeks.
Cut Off From Ambulance Rides
In December 2014, Medicare began a pilot program in Pennsylvania, New Jersey, and South Carolina to require prior authorization for “repetitive, scheduled, nonemergency” ambulance rides — enforcing a long-standing Medicare policy under which beneficiaries needed to require a stretcher before Medicare would pay for the nonemergency rides. But the policy crack-down left Charles Prozzillo, ...
Source: Health Affairs Blog - February 29, 2016 Category: Health Management Authors: Jessica Bylander Tags: Equity and Disparities Featured Medicare Narrative Matters Quality big data On Our Reading List Source Type: blogs
Rare Disease Day is Here!
It's finally come; the rare day that comes every four years, Rare Disease Day. For the past several weeks, leading up to February 29, I've been blogging about rare diseases. The basic theme of all my blogs is that the rarity of rare diseases is not a numeric accident. The rare diseases form a distinct class of diseases having a distinct set of unifying biological properties that distinguish them from common diseases. In the past 30 years, most of the great advances of medicine have been in the realm of the rare diseases; not the common diseases. In many cases, progress in the common diseases has come as a secondary ga...
Source: Specified Life - February 29, 2016 Category: Information Technology Tags: common diseases complex diseases funding for rare disease research medical research orphan diseases orphan drugs rare disease day zebra diseases Source Type: blogs
Rare Disease Day 2016: Patient Voice
Rare Disease Day 2016 recognizes the crucial role that rare disease patients play in voicing their needs and instigating change.
Read the rest of the story... » (Source: Highlight HEALTH)
Source: Highlight HEALTH - February 29, 2016 Category: Consumer Health News Authors: Walter Jessen Source Type: blogs
FDA Guidance: Determining the Extent of Safety Data Collection Needed in Late-Stage Premarket and Postapproval Clinical Investigations
The FDA finalized a guidance it originally released in 2012 that is aimed to help industry collect safety data in late-stage premarket and postapproval clinical investigations. The FDA says in the guidance that selective safety data collection may be possible for some late-stage premarket and postapproval clinical investigations because "certain aspects of a drug's safety profile will be sufficiently well-established and comprehensive data collection is not needed."
Safety Databases
Safety databases collect information to accurately assess and characterize the risks of a new drug. A sponsor collects safety-related data...
Source: Policy and Medicine - February 29, 2016 Category: American Health Authors: Thomas Sullivan - Policy & Medicine Writing Staff Source Type: blogs
“For Rare Disease Day, learn about this 3-month-old born...
"For Rare Disease Day, learn about this 3-month-old born with Ebstein's anomaly, a rare heart defect which accounts for less than 1% of congenital heart diseases. To see rare cases like this, follow "Figure1Rare" on Figure 1." By figure1 on Instagram Posted on infosnack. (Source: Kidney Notes)
Source: Kidney Notes - February 29, 2016 Category: Urology & Nephrology Authors: Joshua Schwimmer Source Type: blogs
Sometimes, just standing there is what patients really need
My newly admitted patient was at the end of a very long struggle with a devastating genetic disorder. He had been treated by some of the finest experts in America for his rare disease, and had come to my rehab unit for aggressive physical and occupational therapy. He was exhausted, but mustered the energy to tell me (probably the 100th physician to treat him) his complicated story.
Listening to this man, and examining his frail body, I realized that he had already explored every treatment option and avenue available. He had extensive conversations about his genetic variant, and which drugs could possibly modify his course...
Source: Kevin, M.D. - Medical Weblog - February 18, 2016 Category: Journals (General) Authors: Val Jones, MD Tags: Physician Hospital Primary care Source Type: blogs
The Original Manifesto from Doctors 2.0 & You #doctors20
Acccording to Wikipedia, a manifesto is a public declaration of principles and intentions, often political in nature. TheDoctors 2.0& Youmanifesto is not political. It is a collaborative work in progress. Our goal is to identify the ways in which the inclusion of collaborative digital tools and social media platforms can improve care and translate this into the words of a manifesto. Our point of reference, is The Cluetrain Manifesto, a set of 95 theses put forward as a manifesto, or call to action, for all businesses operating within the newly-connected...
Source: Denise Silber's eHealth - February 18, 2016 Category: Information Technology Authors: Denise Silber Tags: Doctors 2.0 Source Type: blogs
The Original Manifesto from Doctors 2.0 & You #doctors20
Acccording to Wikipedia, a manifesto is a public declaration of principles and intentions, often political in nature. The Doctors 2.0 & You manifesto is not political. It is a collaborative work in progress. Our goal is to identify the ways in which the inclusion of collaborative digital tools and social media platforms can improve care and translate this into the words of a manifesto.
Our point of reference, is The Cluetrain Manifesto, a set of 95 theses put forward as a manifesto, or call to action, for all businesses operating within the newly-con...
Source: Denise Silber's eHealth - February 18, 2016 Category: Information Technology Authors: Denise Silber Tags: Doctors 2.0 Source Type: blogs
The Original Manifesto from Doctors 2.0 & You #doctors20
Acccording to Wikipedia, a manifesto is a public declaration of principles and intentions, often political in nature. TheDoctors 2.0& Youmanifesto is not political. It is a collaborative work in progress. Our goal is to identify the ways in which the inclusion of collaborative digital tools and social media platforms can improve care and translate this into the words of a manifesto. Our point of reference, is The Cluetrain Manifesto, a set of 95 theses put forward as a manifesto, or call to action, for all businesses operating within the newly-connected...
Source: Denise Silber's eHealth - February 17, 2016 Category: Information Technology Authors: Denise Silber Tags: Doctors 2.0 Source Type: blogs
Senate HELP Committee Moves Closer to Creating Corollary to 21st Century Cures
Last week, the Senate Health, Education, Labor, and Pensions (HELP) Committee approved a series of seven bills to work up medical innovation legislation that will eventually likely become the Committee's response to the 21st Century Cures Act passed by the House of Representatives.
Last month, HELP Committee Chairman Lamar Alexander of Tennessee estimated that the Senate's version will not mirror the House bill, and that the Senate's effort will focus on priorities that are identified by the Committee's members, such as improving federal electronic health record programs.
Last week's productive meeting was not the last...
Source: Policy and Medicine - February 16, 2016 Category: American Health Authors: Thomas Sullivan - Policy & Medicine Writing Staff Source Type: blogs
Bloomberg Health Law Reporter Outlook 2016 – Issues Driving the Healthcare System
This report will likely be emphasized by providers who are looking to increase the quality of care that they offer.
Health Plan Regulation
With continued changes brought about by the Affordable Care Act (ACA), healthcare attorneys advice to health plan clients in the coming year may change, depending on the viability of the ACA. Health plans continue to face enormous challenges, ranging from data issues, cybersecurity risks, and antitrust concerns.
Issues with narrow networks and other plans that limit the number of in-network providers will remain an issue as health insurance plans struggle to balance access with th...
Source: Policy and Medicine - February 11, 2016 Category: American Health Authors: Thomas Sullivan - Policy & Medicine Writing Staff Source Type: blogs
Specialised services clinical commissioning policies and service specification - second wave: consultation
NHS England - NHS England are currently seeking feedback on clinical commissioning policies and service specifications for a variety of interventions for rare diseases. The deadline for comments is 6th March 2016.
Consultation
Press release (Source: Health Management Specialist Library)
Source: Health Management Specialist Library - February 8, 2016 Category: UK Health Authors: The King's Fund Information & Knowledge Service Tags: Commissioning Consultations Source Type: blogs
Do you know about behcet’s syndrome?
I was reading some medical records the other day and came upon a condition known as Behcet’s syndrome. It is actually a rare disease, but more frequent and severe in patients from the Eastern Mediterranean and Asia. Inherited (genetic) and environmental factors, such as microbe infections, are suspected to be factors that contribute to the development of Behcet’s. The syndrome is not proven to be contagious. The symptoms of Behcet’s syndrome depend on the area of the body affected. Behcet’s syndrome can involve inflammation of many areas of the body. These areas include the arteries that supply blood to the body’...
Source: Nursing Comments - January 24, 2016 Category: Nursing Authors: Stephanie Jewett, RN Tags: Advice/Education Caregiving General Public Nursing/Nursing Students Patients/Specific Diseases Behcet's disease Behcet's syndrome cortisone genital ulcers inflammation mouth ucerations skin test Source Type: blogs
