President Obama's EMR Fiasco

My morning cup of coffee included an email from SERMO where there was a post regarding EMR usage.

I thought it worthwhile to include this commentary from
Stan Feld, MD, FACP, MACE

 

"President Obama's goal for healthcare reform is to increase the quality of medical care, increase efficiency of medical care and decrease the cost of care. The goal is admirable. The route he is taking is wrong. In the process he might destroy the medical workforce.

The route the electronic medical record (EMR) stimulus package should take should be flexible and educational for patients and physicians. It should use modern software technology instead of subsidizing old inflexible technology that is set up to be punitive to physicians and patients to the advantage of the government and the healthcare insurance industry.

The term "quality medical care' is used loosely. It has not been appropriately defined. The practice of evidence based medicine has been used to define quality medical care. The problem is evidence based medicine is changing daily.

A better definition should be the best clinical outcome with the most efficient financial outcome. It is assumed that practicing evidence based medicine will lead to the best clinical outcome at the most efficient cost.

Clinical guidelines are defined by "experts" interpreting evidence based medicine. I am/was one of those experts and appreciate its short comings.

Some guidelines are essential and should be inflexible. Others are ever changing and must be flexible. In bureaurocratic systems it is difficult to create flexible rules. Also, all patients are different. Clinical judgment plays an important role in treatment.

Physicians should not be penalized for using clinical judgment. Nonetheless, physicians are penalized in a pay for performance evaluation for deviating from inflexible clinical guidelines. Since some clinical guidelines are always changing the weakness of the approach is obvious.

Physician performance should not be evaluated on static measurements. It must be evaluated on physicians' medical judgment. Clinical judgment is a function of a physician's ability to relate to his or her patients. (patient physician relationship)

Healthcare is a team sport. The patient physician relationship failed but was not measured. .

The poor performance was missed by the static digital healthcare evaluation imposed by an inflexible EMR. The importance of the patient physician relationship and not including patient responsibility in the clinical outcome should be part of any performance measurement. A performance measurement should be a measurement of both the patients' and physicians' performance.

Now that the federal government plans to spend $50 billion to spur the use of computerized patient records, the challenge of adopting the technology widely and wisely is becoming increasingly apparent.

There is no question we should have universal electronic medical records. It should be a teaching tool for patients and physicians. The EMR should be inexpensive and flexible. It should not a tool to judge and penalize clinical performance. President Obama is being ill advised. His EMR stimulus program is going to result in a waste of $50 billion dollars.

The software the government is going to spend $50 billion dollars on is going to be too expensive, inflexible and not widely distributed.

"Instead of stimulating use of such software, they say, the government should be a rule-setting referee to encourage the development of an open software platform on which innovators could write electronic health record applications".

EMR software platforms in the cloud should be developed. This link by Christopher Barnatt is an excellent utube explanation of cloud computing. I suggest all watch it.Amazon uses the cloud to sell books. www.Salesforce.com's business model tracks sales force activity at a minimal cost to the company. It is flexible and maintenance free.

"Such an approach, they say, would open the door to competition, flexibility and lower costs — and thus, better health care in the long run.

"If the government's money goes to cement the current technology in place," Dr. Mandl said in an interview, "we will have a very hard time innovating in health care reform."

The rules can be immediately changed. The cost to a medical practice could be minimal. Its effectiveness is maximal. The cost to the government using modern software technology could be between 1-10 % of what the stimulus is proposing to spend. If it is fashioned as an educational tool to patients and physicians the payback will be maximal, quality of care will improve and the cost of care will decrease.

The opinions expressed in the blog "Repairing The Healthcare System" are, mine and mine alone

Stanley Feld M.D.,FACP.MACE

http;//stan.feld.com

Thank you Dr. Feld for this great summary.

del.icio.us Tags: cloud computing,salesforce,clinical judgment,emr,clinical outcome

ObamaCare

No one has ever said that Barak Obama was or is a champion for entrepeneurship.  He fails to follow the path of legislative changes and the consequential secondary impact of sweeping reform.

Change itself is expensive. Nowhere in the legislation does he allow for the expensive overhead of change.

The Patient Protection and  Affordable Care Act mostly presents edicts and commands about what the Secretary of Health and Human Services "shall do".  There is not much room for discussion or input from anyone else. (hard to believe our legislators would sign off on this. (Unless they had more important things to do and just did not want to be bothered.)

My friend Greg Scandlen in  Consumer Power Report # 225 elaborates:

"The impact of ObamaCare is already showing up in some pretty disturbing ways. A new insurance company founded by our friend Paul Kitchen in Virginia has announced it will close its doors. This is a pity because we need more competition, not less in the insurance market. The company, nHealth, was off to a great start. The original idea was to replicate the original Blue Cross model and provide coverage only for hospital inpatient care. It was able to offer substantially lower premiums than other carriers in Virginia.
But innovation is now officially dead in health insurance. And not just innovation, but new competition of any sort. It is impossible for a start-up company to comply with the loss ratio standards in ObamaCare. There are substantial costs in building and promoting a new company and it takes a while before claims start coming in. A start-up company will collect premiums today, but not have any claims to pay for a year or so. It will not be paying out 80% of its premiums for some time.
Indeed, the federal government will not hold itself to the same standard. Part of ObamaCare is creation of "The Class (Community Living Assistance Services and Supports) Act" which establishes a new federal insurance company to pay for long term care. This company will begin collecting premiums of about $150/month per worker, probably in 2012, but it won't start paying claims for five years after that. So, for five years its "medical loss ratio" will be zero.
One standard for the federal government, another standard for everyone else."

Much of Obamacare is based upon Evidence Based Medicine, and the Dartmouth Health Atlas Study, a study regarding difference in medicare expenses in different regions of the country. No attribution was given to the quality of care or the outcomes.  It is now widely regarded as seriously flawed.

A Good Guy or a Bad Guy?

President Obama has nominated Don Berwick MD to be head of CMS in his administration.

Thanks to Todd Rubin of Doctors 4 Patient Care, I have reviewed and posted comments from a recent presentation of his to the NHS.

Don Berwick is a controversial candidate  for being the head of the Medicare (CMS) system.  The name change several years ago from Medicare to CMS (Center for Medicare,Medicaid Services) was a subtle beginning for the projected changes in health care financing and administration.

Dr. Berwick originates from the most socialistic health system in the U.S.   The Commonwealth of  Massachussets. He was an invited speaker  at the  (U.K.)  National Health Service's Live program. It is impossible to miss his socialistic image for  toward medical care.  He  avoids negatives in their system while emphasizing a few strength in their system. During his presentation he addressed several challenges for the NHS :

He advised:

1"Placing the patient at the center of care

2.Stop Restructuring (this brought applause)the organization constantly.

3.Strengthen the Local Health Care Systems (should be core of design and management.) Hospital care maximized,

4. Reinvest in primary and general practice

5. Don't place faith in market forces.

6. Avoid supply driven care like the plague. It makes care unaffordable

7. Develop integrated approach to quality, and performance of the system.

8. Please heal the divide among the profession, management and the government. Rift has developed.

9. Train the healthcare workforce for the future, not the past.  safety, teamwork, measurement, patient centric

10. Aim for health. 

11. Never give up on what you have begun.  Universal,excellent, acessible,and free at it's core ."

My first reaction was "free for whom?"

If you have time it's well worth watching his presentation at NHS Live.

I have some comments regarding each point.

1. Patient centric care is now being touted in the U.S. Witness the proliferation of Health 2.0 applications

2. Stop...restructuring...massive restructuring is being foisted upon the healthcare system in the United States.

3. Local health care systems are being strengthened with govermental financial incentives for "medical homes" and community health centers (mostly funded by public health funding.)

4. Reinvest in primary care and general practice.  Our attempts to fuel more primary care have been ...nurse practitoners, commercial medical clincs at pharmacies, hope to increase interest in primary care.

5.  Don't place faith in market forces.....hmmm, no comments necessary

6.. Supply accessible technology . (but not too much)

7. Integrated care..some success with large clinics, failure with HMO and managed care

8. Heal the divides.  We seem to be headed in the opposite direction.

9. Train the Healthcare workforce.  We seem to be making some progress in that direction.

10.  Aim for health (WHAT have we been doing for the  past millenia?)

11. No comments

It seems to me NHS is headed away from where we are going.

The Community Health Data Initiative

 

Let there be no doubt about it. Health care and the delivery of care has become a process far greater than that of the individual practitioner.

Transparency and open government comes at a time when informatics provides new avenues for health care, patient participation and hopefully increased efficiency and decreased costs.

Initiative Launch

The Community Health Data Initiative was launched in a Forum at the Institute of Medicine in Washington, D.C., on June 2, 2010. Opening speakers were IOM President Harvey Fineberg, HHS Secretary Kathleen Sebelius and HHS Deputy Secretary Bill Corr. About 15 new applications were demonstrated, making health data available in new formats. Press releases were issued by HHS and the IOM. The Forum can be viewed in the video below.

 

The HHS Community Data  set provides numerous data sets that HHS invites participants to use in creating user friendly applications to make this important information available to patients, health care providers, employers and planners.

Among those participants who demonstrated their applications were:

PALENTIR

MICROSOFT BING HEALTH MAPS

HEALTH COMMUNITIES INSTITUTE TRILOGY

NETWORK OF CARE FOR HEALTHY COMMUNITIES

ASTHMAPOLIS

INGENIX AND INSTITUTE FOR HEALTH IMPROVEMENT

HEALTHWAYS- GAMING PLATFORM-ME YOU HEALTH- COMMUNITY CLASH

GOOGLE (GOOGLE FUSION TABLES)

APPS FOR HEALTHY KIDS

MOBILE APPLICATIONS

MEDWATCHER

iTRIAGE

HEALTHTRACK

 

This short list can be expanded and clarified by watching the video above.

Aneesh Chopra, CTO for the administration announced a competition to develop new applications for extracting data in readabe formats from the current information found in multiple health data bases previously sequestered in public but inaccesible databases.

These awards will be presented in early October at the Health 2.0 Conference to  be held in San Francisco.

The Health Care Challenge (Health 2.0 in San Francisco, October 2010)

What is most interesting is that these applications were developed over a very short time period (about six months).  Collectively they offer a glimpse into what is coming at the frontier of the merger between information technology and healthcare.

This was one of the most exciting sessions I have been priveleged to witness. And I did not have to travel to Washington, DC to be at the meeting.  It was all presented (for free, no travel, no lost time from work) over the world wide web. 

This presentation and many more like it presented by Open Government will be at you disposable, PRN .

del.icio.us Tags: open gov,aneesh chopra,CTO,institute of medicine,sebelius,fineberg,hhs,community health data initiative

Health 2.0

This week Health 2.0 is ongoing in Washington, D.C.  Another kudo to Matt Holt and Indu who had this visionary idea to promote many web based consumer directed systems for health education.

The Health 2.0 Show with Indu & Matthew, June 1 from Health 2.0 on Vimeo.

Much of this meeting will be broadcast via webinars. Much of the functionality of these systems meets the ONC's requirement to meet their definition of meaningful use.

So its seems the market power for meaningful use overpowers governmental edicts for funding.  The feds are already behind in implementation for ONCHIT.

One of the innovative sites is a cooperative agreement between the FDA. CDC, NIH and the National Library of Medicine. This new solution is called "PILLBOX".   It offers readibly accessible information about pill identification in a user friendly format. The information is extracted from NLM, NIH, FDA, and CDC databases.

Pillbox (beta) can be accessed via the web. It is still in a prototype release with limited functionality.

Another exciting application in development is a telephone accessible voice recognition tree to identify a pill. It is demonstrated in the webinar from Health 2.0.

Much of this information is available on either PDAs or Smartphones using downloadable applications.

All in all the rest of this week in D.C. should be exciting with many new Health 2.0 applications.  Enjoy the show!!

Now, along a slightly different track on the Health Train Express is information about Governmental transparency... If health information is going to be more transparent, then perhaps so should governmental policy.

del.icio.us Tags: health 2.0,the Health Care Blog,matt holt,voice recognition,pillbox,fda,cdc,nih,nlm,publicequalsonline

EMR and HIT Usability

The Feds well meaning attempt to stimulate HIT development addresses only one aspect of the reticence of physicians reluctance to move toward using EMR.

The other large stumbling block is 'usability'. How user friendly is the system?  Can the user enter data with the least number of key strokes and/or mouse movements and clicks?  Who analyzes and gathers this data?  I call for each vendor to produce this data.

I know this to be a fact since I have used several EMR systems, AHLTA and VISTA/CPRS.  These perhaps are not the best indicators of usability.  Neither can usability be generalized for primary care, vs specialty care.  Each requires different indicators for successful implementation.

Successful implementation in the ambulatory physician setting is not the same as in a hospital setting.  The range of users in hospital is far greater than in the physician office.

How can collaboration improve the user rate of compliance.

Some of the aspects of compliance regarding post hospitalization protocols may be adapted for EMR usage as well.

Sensitivity to operations,

Deference to expertise,

 Reluctance to simplify, 

Resilience,  

Preoccupation with failure:

 

Jonathon Bush of Athena Health has this to say about HITECH,  Meaningful Use, and other topical interests: (Caution you are entering the 'no spin zone' and some material may not be suitable for some watchers.)

Jonathan Bush, CEO, AthenaHealth from Health 2.0 on Vimeo.

Miscellaneous Thoughts

 

MMR  Vaccination and Autism, The Andrew  Wakefield Story.

 

Health Train Pauses:........

Some Hospitals, Clinics at Risk of Not Qualifying for Federal EHR Funds

 

Just How far along are we on the tracks of the Health Train ??

Most clinics and some hospitals are behind in their efforts to switch to electronic health record systems to qualify for payments under the 2009 federal economic stimulus package, according to a new report from HIMSS Analytics, the Healthcare Information and Management Systems Society's research unit,

Report Findings

According to the HIMSS Analytics report, 30% to 40% of U.S. hospitals could be at risk financially and operationally for not meeting the meaningful use criteria.

Meanwhile, more than 50% of independent clinics in the U.S. are at risk for not meeting meaningful use criteria.

The survey also offered insight into where hospitals are on HIMMS' seven-stage EHR adoption model. Stage 0 is the lowest level of IT adoption and Stage 7 is the highest.

The report found that in 2009:

• 7% of hospitals were at Stage 1 -- which means that they have lab, radiology and pharmacy systems set up -- down from 12% in 2008;
• 17% of hospitals were at Stage 2 -- which means they have a controlled medical vocabulary, limited clinical-decision support and the ability for health data through a continuity-of-care document format, plus all Stage 1 systems and functions -- down from 31% in 2008;
• 51% of hospitals were at Stage 3 -- which means that they have computerized systems for nursing documentation, picture archiving and communication outside of the radiology department, and advanced error-checking and clinical decision-support functions, plus all Stage 2 systems and functions -- up from 36% in 2008; and
• 14% of hospitals were at Stage 4 or higher, more than twice the rate -- 6% -- in 2008.

John Hoyt, vice president of health care organizational services at HIMSS, said the survey shows that a digital divide remains between larger and urban hospitals and smaller and rural facilities, adding that the national financial crisis played a factor in the problem.

Hoyt said that hospitals are expected to spend more on health IT applications through 2015, in part because of federal stimulus funding.

According to HIMSS Analytics, hospital capital spending for health IT is projected to increase by 2% between 2009 and 2010, and hospital capital spending for software applications is expected to account for 46.5% to 48.3% of the total IT capital budgets in 2010

 

The federal time table for adoption of EMR is unrealistic, and many users will chose the incorrect and/or inadequate HIT solution to qualilfy for the federal incentive payment.

The time period for announcement, closure and choice of grantees is too short, and many potential recipients do not become aware of them until too late.

I can save....what ??!!!

I serve as a non-paid consultant for a collaborative group attempting to initiate a regional health data exchange.

I've been on the scene beginning in 2005 when ONCHIT was initiated by then President George Bush.  Despite my enthusiasm and positive attitude I have seen relatively little progress, with few isolated successes on a limited basis.  Lots of talk but little data exchange taking place. 

There are many reasons for this, however I digress. Today's post is about the illusion of savings and the disparity between gains among specialists vs. primary care practices. 

Technology can be a wonderful thing, if it truly serves you. How about a 70" flat screen in a small bedroom....get the idea, a bit of an overkill.  Specialists seem to enjoy high tech...after all that is why they became specialists with scopes, micro surgery, electronics, imaging, and even telemedicine. It even seems closer to basic science, which is where most of us started.

How many of us have bought some special item for our practice, with much enthusiasm and soon it was gathering dust because we were too busy to use it.  Two or three years down the line you may still be making payments and your read about version xxx which obsoletes your 'anchor' sitting in the corner. (or under a desk.) 

In the process of consulting I have observed the theme of

consultants coming, going and moving on to the next project.

Having been away from my 'group' the past years I saw that there had been some movement toward the 'goal'.  There were 25 intersted potential stakeholders. Their next goal was to raise 100,000 dollars to pay a chosen consultant to plan and implement a health data exchange for our region.

I thought to myself, some progress.  Then I had a sinking feeling, here we go again!  They were going to pay 100,000 dollars for their 'skin in the game'. Not one piece of hardware, software or data exchange.   We can postulate how much that will cost.

Two of the three consultants had conflicts of interest, and one was an unbiased well known national authority on these matters.

There are serious doubts about improving efficiency and a negative return on investment.

Paul Roemer has an interesting analysis of incentives, ROI in a careful breakdown of your individual practices. 

The EMR Equation: Break-even Point for Meaningful Use

 

Especially useful is the "Productivity Calculator". Perhaps  biased and/or self serving  by it's sponsor SRS. it gives one the ability to run your own analysis of what EMR will do to your bottom line.

If you are beginning to feel like we are on a merry- go- round,

then watch this video:

 

Writing this blog is so much fun....even if no one reads it.

 

del.icio.us Tags: ONCHIT,merry go round,emr cost analysis,specialty medicine,primary care

What can one little car do on The Health Train Express?

It seems a bit overwhelming, doesn't it? All the pontificating, posturing, analysis and input from people who really know little about caring for people.  Many are producing chaos, and dysfunctional behavior, much like the rest of our government. In an attempt to overcontrol our governments now compete with one another rather than caring for basic needs in the population.

Imagine how ludicrous, the state of Arizona has to protect it's southern border by itself, when the federal government can't or won't....Imagine the state of Virginia telling the federal government that what they propose with health care is unconstitutional.  The federal government suing a state government.  Impossible, you say....no it is REAL. 

It sounds like an impending civil war.  We worry more about what arab countries think about us, and how our European allies rate us in the world.  We allow slave labor in China to produce electronics cheaply for large computer companies.

Here is the story of ONE extra-ordinary American, as reported in the Star Tribune:

Twila Brase, founder of the St. Paul-based Citizens' Council on Health Care, blocks more public policy than she builds, but she has become a force to be reckoned with.

 

Twila Brase has no idea why a magazine named her one of America's 100 most powerful people in health care, and, frankly, neither do her critics.

"I find that hard to believe," said Peter Wyckoff, a longtime lobbyist for senior citizens who worked for a decade around Brase at the State Capitol. "She may be one of the 100 people most setting back health care reform."

 

The 51-year-old nurse turned activist is hardly a household name. Yet in Minnesota political circles, Brase, founder of the St. Paul-based Citizens' Council on Health Care, enjoys the reputation of a self-made libertarian lightning rod, an increasingly powerful free-market contrarian who blocks more public policy than she creates.

Among insiders, she is an acknowledged master of political theater, turning out raucous crowds for hearings and staging publicity stunts such as a recent "Obamacare" shredding party in the Capitol rotunda. She said she solicited no votes for Modern Healthcare magazine's 2009 list of "100 Most Powerful People in Healthcare."

 

"I don't know how I got in," she said. "And I may never get in again."

Tax records show that Brase works in a small office for $48,000 a year. Still, her name appears at No. 75 among the nation's health care movers and shakers. She shares billing with President Obama (No. 1), Secretary of Health and Human Services Kathleen Sebelius (2) and pharmaceutical industry chief Billy Tauzin (39), and her rank of 75th places her ahead of the president of the American Medical Association, the president of the American Academy of Family Physicians and the president of the Blue Cross and Blue Shield Association.

Brase opposes anything she thinks constricts individual freedom or invades privacy. That puts her at odds with many of the most popular concepts in modern health care: evidence-based medicine, electronic medical records, DNA databanks, doctor quality ratings.

"If government gets to control when and if you get health care," Brase said in an interview, "you no longer have liberty, and your right to life is controlled."

Brase knows this philosophy makes it difficult to build public policy. But anyone who thinks she doesn't affect the construction process is in for an attitude adjustment. A decade ago, she threw roadblocks in the way of a state medical database and a public health immunization policy. She opposed President Bill Clinton on health care in 1993 and opposes President Obama today.

She followed up the recent shredding party with a call for Gov. Tim Pawlenty to veto the Legislature's health care plan because it included too much government control.

Critics might say that Brase merely piggybacked on predictable politics. But as the DFL-controlled Legislature slogged through its session, trying to resolve the health care impasse with the governor, Brase counted a win.

"We don't get everything," she said. "But we stop something."

"She's managed to stop or water down some pretty important stuff," former state Health Commissioner Jan Malcolm acknowledged. "She put real brakes on data collection and immunization policy." Malcolm does not think that it is a good thing. As the chief architect of Minnesota's health policy, she found Brase frustrating. In her current job advocating for health care for the disabled through the Courage Center, Malcolm says Brase's contention that the government has no role in health care defies reality.

Her concept

Brase's alternative to government-run health plans would be "medical sharing organizations," groups of individuals who band together by choice and pay collectively for the medical care of those who need it when they get sick.

Nor is she a big fan of private health insurance companies. Although she pays for an individual catastrophic care policy with a high deductible, she considers traditional health insurance wasteful. "I always pay cash," she said. "I negotiate prices."

On a recent visit to the dermatologist, Brase said, she got the doctor to do a $150 mole removal for 90 bucks.

Constructive alternative?

Her ability to negotiate with politicians and health care advocates has not been as successful.

"It's more what she's opposed to than what she's for," Malcolm said. "I never found Twila to be abrasive or disrespectful. But you could talk to her for hours and not make a dent."

Added Wyckoff: "She does not work very collaboratively with most advocates. The price of criticism is a constructive alternative. I don't think she has a constructive alternative."

Brase obviously disagrees.

"We're protecting the rights of citizens," she said. "We're protecting choices. People who describe me as a wing nut don't believe in the heritage of this country."

"She's tenacious," said Rep. Tom Emmer, the Republican gubernatorial candidate. "When people mock her for her views, she backs them up with facts. She's not going to take the spin. She's an asset to both sides."

"She represents what I believe," said shredding party-goer Karen Minar. "She speaks for regular people who go to work every day and pay their bills."

In November, she appeared at a business health care forum in Kentucky, sharing the dais with former U.S. Surgeon General Joycelyn Elders and health care experts from Canada and the Harvard Business School.

This is heady stuff for a farm girl from southern Minnesota with a nursing degree from Gustavus Adolphus College in St. Peter, Minn. Brase left nursing in 1994 after stints at St. Paul's Children's Hospital and in schools in St. Paul and Robbinsdale. She left to crusade against what she considered President Clinton's attempt to let government take over health care. She wasn't a political person, she said, just "true blue for freedom."

Brase's first volley came in an op-ed piece in the Star Tribune in 1994. She signed it as the head of a group that existed only in her head. After the op-ed ran, a sympathizer contacted her and said he wanted to join. "Good," Brase told him, "here's when we'll have the first meeting."

The first meeting blossomed into a six-member board chaired by businessman Martin Kellogg, president of a plastics company in Stillwater, who felt health care reform was too "institutionalized."

"She's very quick," Kellogg said. "She doesn't talk about what she doesn't know. She's a tool for no one."

Brase doesn't sell or rent the Citizens' Council's 12,000-member e-mail list. Meanwhile, her influence has grown a lot faster than her income.

"She became a larger force over the years," Wyckoff said.

del.icio.us Tags: Twila Brase,Citizen's Council for Health Care,Minnesota Health Care,tea party

Cystic Fibrosis Car on the Health Train

Edwin Leap's post today focused on the March of Dimes.  It brought to mind my interest in Cystic Fibrosis. the CF Foundation sponsors an annual walk/run each year, GREAT STRIDES. Although less well known it is a significant event in the lives of those families who have a CF relative in their lives.  The event(s) took place this year on May 13 2010.  Although it is too late to participate this year.....plan on it for 2011. 

At any one time there are about 20,000 CF patients alive. CF is a recessive gene requiring a gene from each parent....one in 2,000 people (caucasians) carry the gene.

Survival rates have improved to the mid 30s, largely due to the research support given by the CF Foundation in their sponsored trials.  Were it not for the CF Foundation CF would be an Orphan Disease.

The CF gene was one of the first genes identified in the human genome. It is responsible for encoding a protein in the cell wall that controls chloride transport across the cell membrane. You can learn more about it.....here. 

My son was born in 1988 and I was told the average survival was to age 17 yrs, and that he would probably not get past age 10. When he was 2 years old the CF gene was identified, when he was three Pulmozyme (DNAse) was released after clinical trials were completed. (the first genetically produced drug by Genentech) He is now twenty-one years old

Along with these breakthroughs significant advances have been made in antibiotics, airway clearing medications, enzyme replacement medications and early aggressive interventions.

Further genetic studies have identified several subtypes of CF and the multiple alleles causing CF.  Treatment courses can now be modified by the genetic mapping of individal CF patients.

When you think about the March of Dimes, think also about "GREAT STRIDES"  for CF.

Here are some other ways we can make a difference.

May is Cystic Fibrosis Awareness Month. Cystic fibrosis is a life-threatening disease that affects 30,000 people in the U.S., and approximately 10 million people are symptomless carriers of the CF gene. There is no cure. Learn more about CF at www.cff.org.

Please consider joining me, Frank Deford, Rosie O'Donnell and friends, Boomer Esiason, Lewis Black, and Francis Collins in our effort to change CF (Cystic Fibrosis) to CF (Cure Found)

del.icio.us Tags: cystic fibrosis,CF foundation,gene therapy,frank deford,boomer eiason,lewis black,francis collins,rosie o'donnell,gary levin,healthtrain express,march of dimes

The 'Breast' Health Care

 

Here is the problem when government begins mandating health care. 

The USPSTF said women in their 40s should balance the benefit of a mammogram with the potential harms. Those harms: false positives, radiation exposure and subsequent follow-up tests, but also the possibility of diagnosing and treating a cancer in a woman that never would have threatened her life. A special communication published last year in JAMA noted that increased screening for both breast and prostate cancer “may be increasing the burden of low-risk cancers without significantly reducing the burden of more aggressively growing cancers and therefore not resulting in the anticipated reduction in cancer mortality.

 

Opposing opinions:

 

These USPSTF recommendations run counter to the expert guidance of the American Cancer Society, American College of Radiology (ACR) and Society of Breast Imaging

The American College of Radiology (ACR) applauds Sen. David Vitter (R-LA) for his recent letter to U.S. Department of Health and Human Services (HHS) Secretary Kathleen Sebelius demanding that, in compliance with recently passed health care reform legislation, HHS immediately remove from all HHS sponsored web sites and materials any references to the discredited and potentially deadly November 2009 U.S. Preventative Services Task Force mammography recommendations.

These USPSTF recommendations run counter to the expert guidance of the American Cancer Society, American College of Radiology (ACR) and Society of Breast Imaging and have undoubtedly confused many women to the point that they have refused needed care.

The federally funded and staffed USPSTF includes representatives from major health insurers, but not a single radiologist, oncologist, breast surgeon, or any other clinician with demonstrated expertise in breast cancer diagnosis or treat

Since the onset of regular mammography screening in 1990, the mortality rate from breast cancer, which had been unchanged for the preceding 50 years, has decreased by 30 percent. Ignoring direct scientific evidence from large clinical trials, the USPSTF based recommendations to greatly reduce breast cancer screening on conflicting computer models and the unsupported and discredited idea that the parameters of mammography screening change abruptly at age 50. There are no scientific data to support this premise.