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A Way to Kickstart the Development of Effective Treatments for Rare Diseases without Taking Needed Resources from Research on Diseases that Affect Many
The only way I see to develop effective medical treatments and care models for many of the thousands of rare diseases is to pool the RESEARCH resources that individual countries are spending and the data countries are collecting about individual rare diseases and put those research resources under international control for prioritizing research agenda and ensuring public access to ALL results and research data.
Yes, I know the USA (probably the largest resource contributor) Congress will go in front of the television cameras and say that the failure of the United Nations and the disproportionate contributions to a pooled resource fund will ensure failure. They will point to the failure of the world to effectively coordinate collaborative research on HIV/AIDS and point to politics, homophobia, disrespect, and the hatred of American politics by certain national and fundamentalist groups and say we would be wasting our money by letting Africans and Arabs and the Russians and Chinese and Indians and Asians and South Americans collaborate with the USA on research and ensuring that research leads to effective treatments for at least some rare diseases.
Enough already. Let’s rise to the occasion of solving resource limitations in studying rare diseases and get an effective mechanism in place for expanding the impact of admittedly small research efforts by individual countries through international cooperation. I trust the governments of the world to collaborate, contribute as they can, and help us start to get some of these diseases treatable. Disease knows no boundaries.
In the last century we collectively developed very advanced medical research techniques. In this century we need to use these methods to solve all of the medical problems possible by putting aside the nonsense politics and nationalism and individual egos and predatory profits and focus on solving many medical issues and ensuring access to effective treatment world wide.
Here’s a way to start. Any yes, this is a test of our humanity and commitment to universal human rights of which medical treatment is but one. But let’s start somewhere that should be relatively easy to agree on (and let a few hundred angry politicians in the USA know that the world considers them bratty children and cannot tolerate their obstructionist and oppositional behavior).
Click on the image to expand. And let’s start the process of collaboration.
Related articles
- Rare Disease Treatments On The Rise: Will Big Pharma’s Focus On Orphan Drugs Benefit Us All? (medicaldaily.com)
- More Than 450 Innovative Medicines in Development for Rare Diseases (hispanicbusiness.com)
#Dementia and “Typical” #Aging: Examples of (Better???) Ways to Present Online Health Information with #MindMaps
In the past I have blogged about my suggestion that Public Health students learn to use methods like mind maps and other visualizations to make health brochures and posters more informative and compelling to the public. Here I am going to show some examples.
The information in this post derives from very credible web sites. [As a note, much of the information about Alzheimer’s disease and “normal” or typical aging appears to be accurately derived from the public domain information put online by various departments of the US government.]
For each image, click to expand.
The American Medical Association has this very informative page on its web site.
I believe that the following mind map is better for explaining the information.
[I acknowledge the fact that various mind map “artists” can make this map more visually appealing and I see this as a first draft.]
*********
The Alzheimer’s Association has posted this professionally valid information on its web site designed in a way as to be compelling through its high density of high quality warnings.
The “problem” with this brochure is that it is “too dense” for me (and probably anyone else without a professional background in medicine) to be able to understand and remember the information. How about including this graphic as a third page (ideally as the ENTIRE page 2) in the brochure. I would bet that the outcomes from the extra understandability and memory retention for this critical information would prove to far offset any additional printing costs.
[I acknowledge the fact that various mind map “artists” can make this map more visually appealing and I see this as a first draft.]
Related articles
- #Dementia and “Typical” #Aging: Examples of (Better???) Ways to Present Online Health Information with #MindMaps (hubaisms.com)
- #CareMaps: Uses of #MindMaps in #Caregiving for Patients with #Dementia, #MCI, and #Neurodegenerative Disorders (hubaisms.com)
- #Cognitive and #Behavioral Tools for Fighting #CognitiveDecline: A #MindMap (hubaisms.com)
Obama’s “Lies” About #Obamacare: A #MindMap
For the past three days I have seen the headlines on news stories and blog posts that state that Obama lied about Obamacare (According to GOP).
I don’t think that he lied (deliberately telling an untruth) but I do believe he repeatedly stated untruths deriving from the fact that neither Obama, the Dems, the GOP, Boehner, the Dem advisors, the GOP advisors, Sebelius, nor the Tea Party idiots really understood what they were debating on and off Fox News.
The screw up is that THEY RUSHED to pass the bill, to try to stop the law in the courts, to put up an untested web site, and to get in front of the cameras first. Nobody took 23 minutes to realize that the entire program was being set up for failure.
Realistically it should take 5-10 years to implement Obamacare in a way that is responsive to patients and healthcare providers, a responsible use of taxpayer money, responsible to all Americans who would like to have their lives be as free of disease and to live as long as possible.
I doubt that there is any experienced healthcare expert in the US who would have thought that the Congress, the States, and POTUS could spend several years in federal courts fighting, thousands of hours on cable tv news debating, no time thinking before opening their mouths, and then at the end implement a well-thought out, effective, responsible healthcare plan for 350 million people.
So really everybody is lying and nobody is lying because nobody understands the plan and its implementation well enough to be able to intelligently comment on it.
Maybe all parties, even the Tea idiots, should agree to take two weeks off, and then start expending energy on implementing a plan that will best benefit ALL Americans. Is this too much to expect from our employees?
Imagine.
PS. Get rid of Sebelius. As of this minute she still does not know what her department is supposed to do in its role as the administrator-manager of all US federal healthcare programs. There are at least 10,000 healthcare professionals in the US who can do a better job at DHHS than Sebelius has done.
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Obamacare Halloween Special 2013
[Guess you didn’t learn to spell before forming an opinion on Obamacare. See picture at bottom.]
[What about Darth Sebelius?]
[Weirdest thing Miley Cyrus has done this year to date. Or is the Speaker trying to be Miley?]
[Yup. Giving the masks away for free, too.]
[I get to keep the Butterfingers.]
[Make sure to only give the candy to people with teeth.]
[Nice Abe, even shorter than the original.]
[Boehner as Miley Cyrus is worse.]
[I see they have a culturally appropriate version for the guy with the trucker’s hat at the beginning of this post.]
To summarize …
[Hard to believe you are sicker than our healthcare system has become during your time running DHHS and Boehner’s tenure as Speaker of the House. The two of you are dancing a very weird tango.]
Scientific Consensus Panel on Healthcare at the Zoo: #MindMap
I drew this mind map in 2011 when I was disgusted with the lack of a organized process to develop a national consensus on what was needed for meaningful healthcare reform. I think this as true in 2013 as it was in 2011. Stylistically, I could redraw this map better now than in 2011. But everybody has to start somewhere, so I resisted that impulse.
I would note that some (all) of these scientist “types” are found in the US Congress (whether scientists or not).
Everybody in Congress wants the peanuts and bananas and too many act like King Kong.
Also note that I have been on consensus panels with all of these types.
Deja Vu Obamacare: 1960s Medicare Arguments All Over Again
US Congress 2013. Never an original thought.
Obamacare vs Tea for Two
the “new” Republican strategy about Obamacare (Independence Day edition)
Delays (no surprise here) in implementing Obamacare have led to the “new” Republican mantra that the law is unworkable.
Grow-up. The Congress passed Obamacare by a majority. The President signed the bill into law. The Supreme Court (led by a Republican-appointed Chief Justice) said the law was constitutional.
Is there any part of this the Congressional Republicans do not understand?
It is very hard to build a system (factory assembly line) so that all of the parts work together, are reliable, produce the intended result, have quality, and are appropriately timed.
Any idiot can throw wooden shoes in the machinery.
Help build the assembly line as did our ancestors of more than 200 years ago. We all benefit from cooperation and well-conceived majority rule.
Self Centered: An American #MindMap 2013
Silent Auction to Significantly Payoff USA National Debt: A #Mindmap
We have sequestration and a US Congress that refuses to develop a realistic compromise US federal budget and long-term economic plan. Never one at loss for ideas, I propose that the US Congress initiate the following silent auction. As absurd as my proposal is, it seems no more absurd than the ideas expressed on cable news each night by our “striking” employees (the US Congress). Before starting this auction, I prefer that the Members of Congress and POTUS sit down once and for all and do their jobs in managing the economic future of the USA. Otherwise, they are going to have to conduct something like this auction (currently going on in a limited and inefficient manner through lobbyists and Cabinet Level administrators).
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Position Opening: Physician (multiple specialties; multiple positions)
Position Opening: Physician. Thousands of opening available throughout USA. All specialties. Highest priority for primary care.
Requirements:
Four-year medical degree, several years of supervised post-doctoral clinical experience. Additional research experience a plus. In possession of a medical license within the state of practice.
Proven effectiveness in communicating with ill, confused, poor, disenfranchised patients, many with co-occuring mental illness and/or chemical dependency and cognitive impairment. Fluency in written and oral Spanish, Chinese, Russian, Farsi, Tagalog, and Arabic a plus.
Ability to work closely with a multi-disciplinary team and communicate well with nurses, social workers, allied health professionals, patients, families, insurers, and malpractice lawyers all of whom may complain at any time that the physician asserts too much influence on patient care.
Willingness to work in conditions were salaries are decreasing annually, patient-doctor ratios are expected to be dramatically higher, and one will be subject to working long work weeks, religious and family holidays, and on an irregular schedule.
Ability to work in a larger healthcare system subject to rules of practice detrimental to patient care with unnecessary and inappropriate regulations, attacks from the public as well as politicians and the press, frivolous malpractice lawsuits that require expensive and lengthy litigation, and very high accompanying stress.
Ability to accurately make life-death decisions while stressed, tired, and in non-optimal settings. Willingness to do so for a low compensation rate.
Willingness to maintain licensure and take regular continuing education courses without compensation.
Ability to spend a large percentage of time completing unnecessary forms in order to obtain insurance reimbursement and to avoid frivolous malpractice lawsuits.
Compensation Range: very low to low.
Immediate openings throughout United States.
What if you built a healthcare clinic (system) and everybody came?
In the current healthcare system, the people who most need help are the least likely to get it.
Think they need an annual physical, some vaccinations, antibiotics when they get an infection, a scolding when they get too fat, and a lecture when they smoke? Think again.
How do you deal with an individual who comes into an emergency room (or in the era of Obamacare, the office of a primary health provider) and is “sick.” Is it because they are homeless or abusing drugs or never had regular healthcare before or struggle with a psychiatric diagnosis perhaps developed as a survivor of rape, incest, or alcoholic parents?
Who do you think is in the current publicly-supported healthcare system of last resort? If that panhandler at the stop sign comes to see a doctor, the patient will typically be hungry, a chain smoker, unable to tell a coherent story or provide a medical history, and prepared to blame a doctor for not being able to fix all of the problems the person has encountered through life. Can you separate a life of living on the street while using drugs and eating fast food with lots of fat and cholesterol from what is found in a simple annual blood panel? Can you tell the medical patient to start eating in a healthy way (when the patient is homeless, has no job, has no money for Whole Foods Market)? Can you expect these patients to adhere to a doctor recommended treatment-intervention which might include lots of pills for an unhealthy lifestyle or because of HIV/AIDS?
High need patient-clients in the healthcare system have many needs and difficulties. Fix one and you see three more problems.
We need a system that can deal with patients-clients that have many of the problems shown in the mind map below. Concurrently. Simultaneously.
or alternately (same model, different way of viewing it) …
PS. I know that effective and cost-effective healthcare/socialcare agencies can be built because the US government has created dozens, if not hundreds, of these programs as “demonstrations” that the concept works. The program is then funded for about five years at a “fair” level and after five years receives no further federal funding (the program is then supposed to have a rich aunt or a “corporate” fund raising department). We KNOW that comprehensive service systems can be built, be effective, use resources appropriately and frugally.
It just takes a village.
Oprah, where are you?
Root of All Evil Revealed on Late Night TV
I am trying to find one thing wrong in the world that ObamaCare is not being blamed for. Can’t find anything on late night tv.
Dr Beller, Obamacare, Describing the Absurd
Even though I tend to vote Democratic [the Dems are really too conservative for me, not to mention pretty arrogant and not so smart but the best I can vote for], I think that this is a very smart statement by a very smart Republican physician about the absurdity of the current healthcare reforms. Unfortunately, Romneycare or doing nothing will be worse and Obamacare is all we have right now that could make it through a Congress of bozos from both parties.
The link above is to the viral version of the video (almost 2M downloads as of this morning). There is also a full 12 minute version. The viral version is taken from the first 2 minutes.
A link to the full version is given below.
In spite of our differences on healthcare reform, I would certainly like to see Dr. Beller at the table in further discussions about the national healthcare system. She has a lot to contribute.