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
Aegerion Pharmaceuticals Reaches Settlement Agreements in Principle with the Department of Justice
Aegerion Pharmaceuticals has reached agreements in principle with the Department of Justice ("DOJ") and the Securities and Exchange Commission ("SEC"), relating to the ongoing investigations by both agencies into the Company's sales activities and disclosures related to JUXTAPID® capsules.
The inquiries into the company started last year, following an investigation done by Brazilian authorities to determine whether or not Aegerion's commercial activities violated local anti-corruption laws.
The agreement in principal comes after former Aegerion Chief Executive Marc Beer resigned after saying on CNBC's Fast Money that ...
Source: Policy and Medicine - May 15, 2016 Category: American Health Authors: Thomas Sullivan - Policy & Medicine Writing Staff Source Type: blogs
Brain-eating Amoeba
Ruqaiyyah Siddiqui, Ibne Karim M. Ali, Jennifer R. Cope and Naveed Ahmed Khan present a new book on Brain-eating Amoeba: Biology and Pathogenesis of Naegleria fowleri Naegleria fowleri is a eukaryotic protist pathogen that causes primary amoebic meningoencephalitis. It is one of the world's deadliest known parasites with a mortality rate higher than 90%: infection almost always results in death. A greater scientific understanding of this parasite, how it lives in the environment and its pathogenic mechanism, is crucial for the development of preventative and therapeutic strategies against this fatal, albeit rare disease. T...
Source: Microbiology Blog: The weblog for microbiologists. - May 2, 2016 Category: Microbiology Source Type: blogs
Brain-eating Amoebae
Ruqaiyyah Siddiqui, Ibne Karim M. Ali, Jennifer R. Cope and Naveed Ahmed Khan present a new book on Brain-eating Amoebae: Biology and Pathogenesis of Naegleria fowleri Naegleria fowleri is a eukaryotic protist pathogen that causes primary amoebic meningoencephalitis. It is one of the world's deadliest known parasites with a mortality rate higher than 90%: infection almost always results in death. A greater scientific understanding of this parasite, how it lives in the environment and its pathogenic mechanism, is crucial for the development of preventative and therapeutic strategies against this fatal, albeit rare disease. ...
Source: Microbiology Blog: The weblog for microbiologists. - May 2, 2016 Category: Microbiology Source Type: blogs
IMS Releases 2016 Report on Prescription Drug Spending – Net Price Growth 2.8% in 2015
Discussion on Medicare Part B Drug Payment Model Demonstration (Source: Policy and Medicine)
Source: Policy and Medicine - May 1, 2016 Category: American Health Authors: Thomas Sullivan - Policy & Medicine Writing Staff Source Type: blogs
What it means to meet Mikey
You know those really good people, the ones who are determined to make the world a better place? I’m not one of those. I live in the Nation’s Capital – a beehive for the cause-oriented – so I know a really good person when I see one. I have colleagues who tithed their babysitting money. Who spent their college downtime standing up global nonprofits. Who mentor and tutor and build habitats for humanity.
I spent my babysitting money on ill-considered teenage clothing. I spent my college downtime playing quarters. And until recently, my adulthood has been, for all intents and purposes, volunteerism-free. ...
Source: Disruptive Women in Health Care - April 27, 2016 Category: Consumer Health News Authors: dw at disruptivewomen.net Tags: Advocacy Children Chronic Conditions Source Type: blogs
Identifying a rare disease: Why proper communication is key
Today’s restless society has taken its toll on modern medicine. Among all the strategies for protocol optimization and health insurance improvements, doctors get to spend less and less time actually talking to their patients. Each check-up needs to be performed in a certain amount of time, and every procedure needs to be completed as quickly as possible so that hospitals are efficient and profitable.
While this makes perfect financial sense, it is definitely not the right approach from a medical standpoint. It is crucial that doctors have enough time to analyze the patient’s general history, as well as the main reasons...
Source: Kevin, M.D. - Medical Weblog - April 18, 2016 Category: Journals (General) Authors: Richard Robinson, MD Tags: Conditions Primary care Source Type: blogs
Progress against cancer? Let's think about it.
It is difficult to pick up a newspaper these days without reading an article proclaiming progress in the field of cancer research. Here is an example, taken from an article posted on the MedicineNet site (1). The lead-off text is: " Statistics (released in 1997) show that cancer patients are living longer and even " beating " the disease. Information released at an AMA sponsored conference for science writers, showed that the death rate from the dreaded disease has decreased by three percent in the last few years. In the 1940s only one patient in four survived on the average. By the 1960s, that figure was up to one i...
Source: Specified Life - March 25, 2016 Category: Information Technology Tags: cancer cancer cure cancer statistics cancer treatments orphan diseases progress in cancer research rare diseases Source Type: blogs
Progress against cancer? Let's think about it.
It is difficult to pick up a newspaper these days without reading an article proclaiming progress in the field of cancer research. Here is an example, taken from an article posted on the MedicineNet site (1). The lead-off text is: "Statistics (released in 1997) show that cancer patients are living longer and even "beating" the disease. Information released at an AMA sponsored conference for science writers, showed that the death rate from the dreaded disease has decreased by three percent in the last few years. In the 1940s only one patient in four survived on the average. By the 1960s, that figure was up to one in th...
Source: Specified Life - March 25, 2016 Category: Information Technology Tags: cancer cancer cure cancer statistics cancer treatments orphan diseases progress in cancer research rare diseases Source Type: blogs
A New Method for Early Detection of Amyloid in Aging Tissues
Better methods of detecting the various forms of amyloid as it builds up in tissues with age should result in greater support for development and availability of the means to remove this unwanted form of metabolic waste. Amyloids are present in every individual to some degree, that presence increasing with age, and are known to cause or be associated with numerous age-related diseases. This is one of the fundamental forms of damage that causes aging, yet amyloid levels are rarely assessed in healthy individuals, or even for patients with diseases that are relevant but something other than full-blown amyloidosis. Ideally ev...
Source: Fight Aging! - March 23, 2016 Category: Research Authors: Reason Tags: Daily News Source Type: blogs
Collaboration With Chronic Disease Groups Optimizes Outcomes For Payers And Patients
Some new specialty treatments for patients with rare and chronic diseases are nothing short of transformational, allowing many to live longer and healthier lives. However, these new treatments are often expensive, creating challenges for health insurance companies to design and implement policies that offer patients access to the care they need at an affordable price.
Shifting regulatory environments, changing economic conditions, and new medical discoveries all play a role in shaping payer polices relative to these specialty treatments. Insurers now face greater challenges in developing drug policies that cover the needs ...
Source: Health Affairs Blog - March 23, 2016 Category: Health Management Authors: Marcia Boyle Tags: Costs and Spending Featured Health Professionals Insurance and Coverage Organization and Delivery Payment Policy chronic disease Health Care Service Corporation Immune Deficiency Foundation immunodeficiency diseases patient uses of evi Source Type: blogs
Genetic and Rare Diseases Information Center (GARD)
The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences (NCATS) and funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.
Each rare or genetic disease has its own web page that includes: questions answered by GARD Information Specialists; links to resources where you can find more information; information about genetic testing and ge...
Source: BHIC - March 4, 2016 Category: Databases & Libraries Authors: Lori Tagawa Tags: Multilingual Websites Source Type: blogs
Delivering for patients with rare diseases: implementing a strategy
Rare Disease UK -This progress report recognises that there has been significant progress across the UK but suggests that much remains to be done to meet the needs of the millions of people affected by rare diseases.
Report
Rare Disease UK - news (Source: Health Management Specialist Library)
Source: Health Management Specialist Library - March 2, 2016 Category: UK Health Authors: The King's Fund Information & Knowledge Service Tags: Patient involvement, experience and feedback Patient safety Quality of care and clinical outcomes Source Type: blogs
Launching a New Natural History Grants Program: Building a Solid Foundation for Rare Disease Treatments
By: Katherine Needleman, Ph.D. and Gumei Liu, M.D., Ph.D. Today, on Rare Disease Day 2016, FDA’s Office of Special Medical Programs/Office of Orphan Products Development (OOPD) is proud to announce the launch of a new grants program to fund natural … Continue reading → (Source: FDA Voice)
Source: FDA Voice - March 1, 2016 Category: American Health Source Type: blogs
A Post-Oscars “Spotlight” on Neonatal Lupus for Rare Disease Day
by Amanda Zink, J.D., M.A. and Jill P. Buyon, M.D.
As national funding decreased in recent decades, medical research suffered. Progress toward uncovering beneficial preventative and therapeutic treatments slowed for thousands of devastating conditions, affecting the health, happiness, and life expectancy of millions of Americans. Young scientists trying to enter the biomedical research arena last year faced the worst funding climate in half a century, with NIH spending down 22% since 2003. December of 2015 brought a glimmer of hope, however, when Congress passed a federal spending bill that included the biggest increase in...
Source: blog.bioethics.net - March 1, 2016 Category: Medical Ethics Authors: Amanda Zink Tags: Clinical Trials & Studies Featured Posts Institutions, Centers, Funding leap year neonatal lupus orphan diseases PATCH trial Rare Disease Day Source Type: blogs
