Listen Up

Sunday, May 19, 2013

The Trials of Progress in the Affordable Care Act

 

Five months after primary care doctors who treat Medicaid patients were supposed get a big pay raise, most physicians have yet to see it.

While Medicaid fees vary by state, they are generally far below those paid by Medicare and private plans. The change means an average 73 percent average pay increase nationally, according to a 2012 study by the Kaiser Family Foundation (Kaiser Health News is an editorially independent program of the foundation.)

One of the main tenet of the ACA is the assimilation by Medi-caid of the eligible uninsured.  In order to attract more physicians who will accept medicaid CMS and the states have promised to increase reimbursements for physicians who accept Medicaid.

Stephen Zuckerman, senior fellow at the Urban Institute, said doctors were hesitant to sign on as a result of the pay raise given that it expires at the end of 2014, and the implementation problems won't help. "Because of the temporary nature of the pay raise, it was always questionable how many doctors would jump at treating Medicaid patients if they had not done in the past," he said. "If doctors were tentative before, they still have a reason to be."

The federal government’s offer to fund the increase for the first several years leave a very real open question as to how state’s will fund it when the federal subsidy ends.

It does not look promising as even before the ACA’s January 2104 timetable kicks in with this delay.  The ACA requires the reimbursement increase for medicaid in 2014.

Is this a portender to the financial squeezes of the ACA?  The Affordable Care Act only mandates the reimbursement rate if the physician attests to being a primary care provider. Earlier this year, CMS said doctors will be able to get the higher fees retroactively to Jan. 1, when states do implement the provision. But many states have set deadlines for April and May for doctors to self-attest that they are primary care physicians in order to get the retroactive pay. Those that miss the deadline will only receive the pay raise once they fill out a form showing they are licensed as a family doctor, pediatrician or internist.  (Many OB/GYN MD’s offer primary care as well.)

 

Saturday, May 18, 2013

Uncertainty Still Clouds Health Care Law

 

The New York Times summarizes quite accurately the current status of the Affordable Care Act.

Three years after President Obama signed the health care reform law, there are concerns that the process of implementing it will be rocky. Even some of the law’s supporters are worried.

Perhaps more troubling for the White House, the Affordable Care Act is still not well liked or well understood. The Obama administration had hoped that over time, the legislation would gain enough support to help smooth over the rough patches of putting it into practice. Instead, public opinion has remained mostly static: a plurality of Americans still disapprove of the law, and a substantial portion of the public remains uncertain about what it says, according to recent polls.

Now the National Physician’s Alliance has published and emailed a position paper endorsing the ACA as the greatest good for the public health, without addressing basic concerns expressed by those who oppose the ACA as it is now mandated.

Their own analysis reveals the dichotomy of approval and disapproval of specific portions of the ACA, and disregards the critical financial aspects of implementing the far reaching mandate that will reach into every sector  of our lives and the economy.

There is even confusion about whether the health care law is still, in fact, law. A Kaiser Family Foundation survey [PDF] conducted in April found that 41 percent of American adults did not know that the Affordable Care Act remains the law of the land. A separate tracking survey conducted by Kaiser, which has done far more surveys on health care than any other polling organization, found that roughly half of American adults said they did not have enough information about the law to understand how it will affect them.

 

The National Physicians Alliance disregards several key and critical elements:

1. The use of the IRS to monitor businesses who provide, and individuals who have health insurance.

2.The misguided intent to expand Medi-caid to accept the uninsured.  It is a means tested subsidy

3.The effects upon business growth and increasing business operating expenses.

4.The largely untested rate of implementation and the integrated use of health information technology and federal incentives and subsidies for HIT

5.The effects of meaningful use, forcing MDs to accept inadequate electronic medical records systems which reduce clinical efficiency.

6.The lack of accessibility to primary care physicians in many regions of the country. This will take at least five to eight years to address unless unqualified

Even the National Physician’s Alliance whose work is guided by the principles for health care reform advanced by the Institute of Medicine: proposes that:

  1. Health care coverage should be universal.
  2. Health care coverage should be continuous.
  3. Health care coverage should be affordable to individuals and families.
  4. The health insurance strategy should be affordable and sustainable for society.
  5. Health insurance should enhance health and well-being by promoting access to high-quality care that is effective, efficient, safe, timely, patient-centered, and equitable.

The ACA as written cannot meet the requirements of #4.

Conclusions:

One reason the Obama administration might still be optimistic is that while surveys have consistently found that a plurality of Americans have an overall negative view of the Affordable Care Act, they have just as consistently shown that large majorities of Americans favor individual elements of the law.

For example, Kaiser has found that about 70 percent of adults support providing financial assistance to low- and moderate-income Americans who do not have employer-provided health insurance, and also that about 70 percent support health insurance exchanges and the elimination of out-of-pocket costs for many preventive services — both elements of the health care law.

Physicians by a vast majority want a Health Law that will insure all Americans, they are a keystone for healthcare, they know what has worked and what does not, and we insist on a stable workable model financially for all components of the health system…..not a pipe dream.

 

Monday, May 13, 2013

How to Start A Movement

 

We are seeing the second phase of HIT adoption….the leaders have come and gone, and how the second and third tier of users are multiplying.

It is easy to explain and visualize from a TED talk by Derek Silver

The same mechanism will apply to the Accountable Care Act and perhaps Accountable Care Organizations.  The challenge with ACA is to make it a financially sustainable business model.

The same applies to Integrated Health Systems. 

However in the case of IHS the first indications are a decrease in individual practitioners with some collaboration and business solutions to reduce overhead and hopefully improve efficiency. This phase is largely driven by economic concerns and market dominance in a region. 

The current planned changes in reimbursement will be a driver for the next phase of integration.  This phase will require a sophisticated data analytical approach to determine changes in outcomes based upon  treatment models.  It is expected  that outcome improvements will lower costs.

The further growth of HIS will be at the expense of the present individual, and small medical groups.   Eventually the Integrated Health System will provide the most efficient administrative and clinical organization.

The team approach will become mandatory for clinical  excellence.

Integrated health systems such as Mayo Clinic, Kaiser Permanente, Cleveland Clinic, Henry Ford Hospital Systems and many others are at a distinct advantage to develop the accountable care organizations described by CMS. University Systems also provide an integrated system with their own faculty medical groups or those physicians already employed by the University.

The investment necessary to develop these organizations will be felt the most by the smaller entities that will require information technology infrastructure outlay, as well as C-suite reorganization. 

In many cases this will also require physical relocation and not be isolated to just IT and/or administrative functions.

The pushback against the ACA has become considerable, however organization and communicating with all of Congress is essential, both Democrats and Republicans.

 

Thursday, May 2, 2013

OBAMACARE 411

 

About three months ago I posted an edition title “Obamacare 911”   For some reason this excited the search engines and I continue to receive a majority of hits when people search. Not certain if it’s the Obamacare or the 911, or perhaps both.

Today I realized Obamacare 411 is a much better title. It hints that this is the place for Information, or today I guess it is called ‘Directory Assistance.”

Health Train is here ready to serve your 411 and even 911 requests.  I recommend you dial 911 if it’s a life threatening emergency or what you perceive to be life threatening. (for instance, I am out of vanilla ice cream)

411 or Directory assistance for the Accountable care Act is becoming overloaded. The numbers and information changes rapidly

Sen. Max Baucus    HHS Kathleen Sebelius

Senator Max Baucus (Democrat) who previously supported the Affordable Care Act strongly admonished the Head of HHS (Kathleen Sibelius) before a congressional  hearing stating the law was badly flawed and miscalculated in terms of start up expenses.

WASHINGTON – A senior Democratic senator who helped write President Barack Obama’s health care law stunned administration officials Wednesday, saying openly he thinks it’s headed for a “train wreck” because of bumbling implementation.

“I just see a huge train wreck coming down,” Senate Finance Committee Chairman Max Baucus, D-Mont., told Obama’s health care chief during a routine budget hearing that suddenly turned tense.

Baucus is the first top Democrat to publicly voice fears about the rollout of the new health care law, designed to bring coverage to some 30 million uninsured people through a mix of government programs and tax credits for private insurance.

A six-term veteran, Baucus expects a tough re-election in 2014. He’s still trying to recover from approval ratings that nosedived amid displeasure with the health care law in his home state.

Normally low-key and supportive, Baucus challenged Health and Human Services Secretary Kathleen Sebelius at Wednesday’s hearing.

He said he’s “very concerned” that new health insurance marketplaces for consumers and small businesses will not open on time in every state, and that if they do, they might just flop because residents don’t have the information they need to make choices.

Responding to Baucus, Sebelius pointedly noted that Republicans in Congress last year blocked funding for carrying out the health care law, and she had to resort to raiding other legally available departmental funds.

The administration is asking for $1.5 billion in next year’s budget, and Republicans don’t seem willing to grant that, either.

At one point, as Sebelius tried to answer Baucus’ demand for facts and figures, the senator admonished: “You haven’t given me any data; you just give me concepts, frankly.”

“I don’t know what he’s looking at,” Sebelius told reporters following her out of the room after Baucus adjourned the hearing. “But we are on track to fully implement marketplaces in Jan. 2014, and to be open for open enrollment.”

That open-enrollment launch is only months away, Oct. 1. It’s when millions of middle-class consumers who don’t get coverage through their jobs can start shopping for a private plan in the new marketplaces.

But half the states, most of them Republican-led, have refused to cooperate in setting up the infrastructure of Obama’s law. Others, like Montana, are politically divided. The overhaul law provided that the federal government would step in and run the new markets if a state failed to do so.

After the hearing, Baucus’ office clarified that he still thinks the Affordable Care Act is a good law, but he questions how it is being carried out.

And the Washington Times Reports;

“rom the outset, the senator’s terse and pointed questions made it clear that he did not think her agency had done enough to implement key pillars of the law by 2014.

He also said he is “very concerned” by the lack of information among small business and accountants who are “throwing their hands” up over the law.

“I just see a huge train wreck coming down,” Mr. Baucus said Wednesday. “You and I have discussed this many times, and I don’t see any results yet.”

His comments turned heads because Republicans are typically the ones who openly criticize Mr. Obama’s signature domestic achievement.

Mr. Baucus has served in the Senate since 1978 but faces a tenuous battle for re-election in 2014.

Last month, he was among four Democrats from traditionally red states who voted against the Senate Democrats’ budget plan for the coming year. And Wednesday, he was among a handful of Democrats who did not support a bill that would expand background checks before certain gun sales signs of just how fragile his political terrain has become.”

 

Monday, April 29, 2013

Health Reform, ACA, Medicaid, Congress and the Edsel

 

Time is marching on towards January 2014, the next date for implementation of the major stages of the Affordable Care Act.  There are those who live in denial hoping for the best and those who realize the tsunami is on it’s way.  Like Tsunami’s the water rushing out does more damage than coming on shore.’

The initial incoming wave will be the increase of previously uninsured entering the system.  Not only will there be more patients, they will be the sickest with more problems, more chronic illnesses, previously undiagnosed, untreated and at more advance stages of their illnesses.

 

As the wave rushes in it will inundate the health system, peak and then rush out, sucking with it the vestiges of the old system.  There will be many innocent bystanders, rich and poor, and only the ones standing on the highest ground will not be effected.

Avik Roy, who writes for The Apothecary opines

The Apothecary is  a blog about health-care and entitlement reform.

 

Congress, Fearing 'Brain Drain,' Seeks to Opt Out of Participating in Obamacare's Exchanges

Exchanges are crucial to the future of health reform

The idea was simple: that if Congress was going to impose Obamacare upon the country, it should have to experience what it is imposing firsthand. But now, word comes that Congress is quietly seeking to rescind that provision of the law, because members fear that staffers who face higher insurance costs will leave the Hill.

While I have many friends who work for Congress, and I wish them well, it is absolutely a good thing that members and staffers are enrolled on the exchange. It is vital for these individuals to experience, first-hand, how Obamacare’s costly mandates and regulations will drive up the price of health insurance. Staffers will, in particular, be affected by Obamacare’s “community rating” provision, which jacks up the cost of insurance for young people. (Most Hill staffers are in their twenties and early thirties.)

Sen. Grassley’s original idea was to require all federal employees to enroll in the exchanges, instead of in the Federal Employee Health Benefits Program, where most gain coverage today. Indeed, a previous Senate Finance Committee amendment proposed putting members and staffers on Medicaid. But “fierce opposition from federal employee unions” sank Grassley’s effort, and he had to water his amendment down to only apply to Congress and congressional staff.

Even those in CMS are worried;

CMS on Obamacare's Health Insurance Exchanges: 'Let's Just Make Sure It's Not a Third-World Experience'

Increasingly, officials in the Obama administration are worried that the rollout of the exchanges will be chaotic, given the law’s complexity and unrealistic deadlines. “We are under 200 days from open enrollment” on the exchanges, noted Henry Chao, deputy chief information officer at the Centers for Medicare and Medicaid Services, at a recent conference. “I’m pretty nervous—I don’t know about you.”

Rate shock is a bigger danger than implementation

It’s almost certain that the rollout of the exchanges will be choppy, in terms of the user experience, the Byzantine application process, and the degree to which insurance plans are capable of formulating their products on time, given how late HHS has been at giving regulatory guidance to carriers. But while exchanges are complicated to set up, it’s not an impossible task; after all, Massachusetts has had an Obamacare-like exchange for years.

“In some markets,” said Aetna’s CEO, Mark Bertolini, insurance premiums could increase “as high as 100 percent. And we’ve done all that math. We’ve shared it with all the regulators. We’ve shared it with all the people in Washington that need to see it. And I think it’s a big concern.” Privately and publicly, most of Bertolini’s peers at UnitedHealth, WellPoint, Humana, and Cigna have said the same thing.

It seems incredulous that  Congress would invoke a “WalMart’ feature to insure those who work for our federal government.  Imagine the most powerful nation in the world insuring their government workers through medi-caid. 

Medi-caid has such a bad name that no matter what was done to it it’s still the Edsel of health systems.

   File:EdsellogoE.png

What is in a name?  Sometimes everything.

 

Sunday, April 28, 2013

Well Healed ? Turf War

 

SACRAMENTO — Obamacare is supplying fresh ammunition for one of the oldest turf wars in Sacramento.

It pits doctors — represented by the politically powerful California Medical Assn. — defending their turf against other medical providers. They're nurse practitioners, optometrists and pharmacists.

In an article published in the Los Angeles Times by George Skelton he describes a ‘turf war’ breaking out over the monies the Affordable Care Act will govern.

The effects will certainly be inflationary, which is what every federal program creates, rather than diminishing expenses.

Contrary to what Mr. Skelton asserts that  the ‘well heeled doctors “ are holding their ground, the opposite is true.  Firstly the  docs are not well healed, after a ten year losing battle with insurance and medicare reimbursement cut backs and restrictions and the never ending increase in bureaucracy, chaos and confusion caused by the affordable care act. 

When the act kicks in next January, most Americans will be required to buy health insurance or pay a penalty.

In California, that is expected to swell the insurance rolls by 4 million to 5 million people. (About 7 million currently are uninsured, but that includes illegal immigrants, who won't be eligible for Obamacare.)

There simply won't be enough doctors to care for all the newly insured, contend the turf invaders.

But now the nurse practitioners, optometrists and pharmacists are attacking all-out, fighting for a larger chunk of the action to be funded by Obamacare, officially called the Affordable Care Act.

Solutions:

Bottom line……….More providers….more cost. Using telehealth and telemedicine as well as remote monitoring most of these tasks can be done remotely. Including

1. Electronic stethoscope

2  EKG

3  pO2

4. Vital signs

5  Blood glucose levels

6 Others in development using nanotechnology and microchips.

Location: Almost anywhere with a cell phone connection or internet

Advantages

1.Little upfront cost

2 No additional provider licensing requirements

3. Assure one standard of care

4. Could be integrated into academic teaching programs.

There are cost effective means to expand accessibilty to primary care. CMS needs to open the door for effective reimbursements either on a per case basis or a flat fee model using a monthly schedule. There will be secondary gains, including fewer admissions to hospitals.

 

Tuesday, April 23, 2013

Have Physicians lost their MoJo ?

 

 

Medical decision making is a complex process, poorly understood by non physicians, and often judged inaccurately by non peers. 

In today’s world changes are gradually occuring which erode physician confidence, and in some cases impinge upon moral and/or ethical decisions.

Twenty years ago we rarely heard of ‘disruptive physicians’ although I am sure there were many.  At that time it was   politically incorrect to  point out or collar the “offensive physician”, and the ‘whistle blower’ would face further embarassment or even official reprimands.

Medical trainees today are taught to be polite to handle conflict and ‘insubordination’. Certain behavior in an academic medical center may not be acceptable in the ‘real world.

Certain enlightened academic  department heads can deal effectively with their trainees… Community hospitals should have in place process on dealing with disruptive physicians to remediate disruption and also to be certain that prohibited substances, alcohol or misappropriation of prescription medications are not a factor.

 

Physicians often see problems at their workplaces relating to patient quality of care, financial practices, mistreatment of staff, and other issues. But as more doctors take jobs as employees of hospitals, medical groups, and other large organizations, they increasingly face the same dilemmas as millions of other working stiffs. 

Across the country, a growing number of physicians are indeed losing their jobs -- and often their hospital staff privileges -- after protesting employment conditions. Such complaints may involve patient quality-of-care problems, short staffing, misallocation of funds, improper financial incentives, fraud and abuse, discrimination, overuse or withholding of medical services, or other misconduct.

When they come across actions or policies that they don't think are right, they have to decide whether it's worth it to speak out and get labeled as a troublemaker -- or perhaps even get fired.

Physicians should communicate their concerns to their employers as professionally and objectively as possible through official channels, such as their medical staff organization or medical group, experts say. But physicians sometimes don't take the ideal approach and risk getting labeled as disruptive personalities or troublemakers.

2. Be careful how you express yourself

3.There is no guarrantee the outcome will be successful even in the most ideal situation

4. Does vindication make it worthwhile?

5. Still there are some limitations .

The employer (group) holds the upper hand and when the provider signs a contract the physician should realize that fact.

The AMA statement explicitly accepts that physician employment contracts may allow hospitals to strip doctors of their medical staff membership and clinical privileges at the same time they are terminated, known as a "clean sweep" clause. "If that's accepted by the AMA, the rest of the principles protecting physicians are meaningless," he argues. "If physicians can be fired without cause and then automatically lose their medical staff membership and its due process protection, how many will dare be a patient advocate?"

Some experts advise physicians not to sign employment agreements with such onerous provisions. But others say that physicians often have little leverage to remove them. "It's not an equal negotiating table," says Dr. Gatrell, who's now working for a small urgent care practice.

Attorneys who represent physicians in such cases say that doctors need to think hard before they do stand up. Massachusetts attorney Peter Noone represents Veterans Administration staff physician Anil Parikh, MD, who was fired in 2007 after he disclosed confidential patient information to members of Congress out of concern over what he viewed as poor-quality care at the Jesse Brown VA Medical Center in Chicago. Dr. Parikh won a 2011 decision by the federal Merit Systems Protection Board that reinstated him on the basis of the federal Whistleblower Protection Act.

And that reminds me what my father told me, a long time ago….”Life is not fair'”

NEXT:  I work so hard, and I am penalized so often…………

 

 

What Happens if Healthcare Reform Really Works

 

Most of us who are physicians often wonder how and if the ACA will reach it’s intended goal of more universal coverage.

It also runs the risk of not working, or working and having other non intended consequences.

By James Doulgeris

Even modest achievement of the triple aim of decreasing costs, improving outcomes, and improving patient experience creates an uncomfortable economic conundrum.

Let’s set some real and doable goals over the next several years for the sake of argument: Cut just a quarter of the obvious waste in the system by eliminating duplication of tests and services by coordinating care, move the dial a little on the cost of treating chronic disease, modestly impact negative patient behavior and eliminate just half of the unnecessary ER visits, hospital admissions, and hospital readmissions.

In summary, we’re cutting a quarter of the waste in healthcare, or $190 billion per year, and getting a handle on chronic disease, cutting its cost by just 10 percent, saving another $210 billion a year after accounting for the eliminated waste, for a total of $400 billion per year.

Here’s what happens:

The overall healthcare spend would shrink by 13.3 percent. The entire U.S. economy would take a direct hit of 2.2 percent, and an indirect hit of nearly two percent. With growth at about one percent, that is a net 3.2 percent drop in the Gross National Product, far worse than the Great Recession.

Unemployment would soar by nearly two percent, or almost 2 million of the over 20 million direct healthcare providers plus million or so indirect workers. All told, that is about 1.9 percent of the entire workforce.

But, that’s only half of the story. As we saw with the federal budget sequester, the predicted apocalypse was more akin to a non-event. Two factors ameliorate the impact of shrinking the country’s total healthcare spend and one is a wild card:

Here are some possible positive outcomes:

The ACA puts somewhere north of ten million newly insured people into the system who, as happened with Medicare, will consume far more services than projected; and,

The savings, thanks to the ACA’s 85 percent rule forcing a return of unspent premiums to the private sector, are put back into the economy, offsetting much of the impact.

The wild card is the Federal and State governments, which must do two things:

Not tax the unspent premiums to allow the money to go directly into the economy and,

Apply its savings to reduce the deficit, taxes or both.

It will still negatively affect the economy in the short term, but it is likely to save it in the long term.

If the government commits to real reform and to what it will do with its windfall, the light at the end of the healthcare tunnel will be sunshine.”

Interesting thoughts, is this a win-win  or a lose-win or maybe even a lose-lose…My bet is it will be another ‘non-event’ like the sequester. 

Monday, April 22, 2013

Should You do More than One Thing at a Time?

 

Certain physician specialties lead to decreased physical activity, boredom, and may even create dumbness.  This is true of many occupations and doctors are not immune.

Radiologists, pathologists, anesthesiologists, psychiatrists, medical directors, and a few others are less mobile and tend to be less physically active during their work days.

Scientists discovered that when we sit all day, "electrical activity in the muscles drops… leading to a cascade of harmful metabolic effects," and sadly even getting regular doses of exercise doesn't offset the damage. But now there's new evidence of the harm of sitting. Not only is it making you fatter, it might also be making you dumber.

Sabine Schaefer, a researcher at the Max Planck Institute for Human Development in Germany, recently looked at the effect of walking on working memory. Your mother may have warned you not to walk and chew gum at the same time, but when Schaefer compared the performance of both children and young adults on a standard test of working memory when they were sitting with when they were walking, her results contradicted mom's advice. The British Psychological Society's Research Digest sums up the research results:

 

The headline finding was that the working memory performance of both age groups improved when walking at their chosen speed compared with when sitting or walking at a fixed speed set by the researchers. This was especially the case for more difficult versions of the working memory task, and was more pronounced among the children than the adults. So, this would appear to be clear case of mental performance actually being superior in a dual-task situation.

What type of activities do you perform that allow ‘duality of thought and exercise during your work day?

    

Of course, not every mental activity can or should be performed while walking, but this new research reinforces anecdotal evidence and other research findings that suggest being too tightly chained to our desks is bad for our minds as well as our physical health. Science shows we often have creative breakthrough when our minds are disengaged from the problem we're wrestling with, hence the common experience of getting great ideas while relaxing in the shower.

My next blog will be outlining these steps which should make you wiser, less dumb and perhaps even less fat.

This topic has some opposite opinions which I will discuss next time.  What activities do you use?

 

Friday, April 19, 2013

THE FUTURE OF HEALTH INSURANCE

 

Perhaps  the term “Health Insurance”  has become an oxymoron. Health Insurance now has become a waste-basket term that encompasses many different categories for medical bill reimbursement.

McCallister retiring Jan. 1Bruce Broussard, CEO of Humana Inc..

Here's what Humana's CEO has to say about the future of health insurance.

“The health care system of the future will likely come with fewer guarantees,In other words, rather than offering a health plan, employers will probably begin offering specified payments and telling their employees to buy their own insurance.

“Our role becomes a role around health more than just the financing of health care,” he said.

“What happened to retirement is probably going to happen to health care, The shift, from defined-benefit to defined-contribution plans, is exactly what happened when 401k retirement accounts replaced pensions.”

Broussard’s forecast reveals that the insurance companies no longer think of themselves as insurers based upon risk.  Risk is being removed from the underwriting of health events.

Broussard and the others in the C-suites of health insurance companies have a crystal ball far more accurate than the Washingtonians and academicians who don’t have a clue as to what the ACA is doing and will do in the next decade.

In one full swoop Congress has entangled the entire federal government and state governments in delivering health care, along with commerce, defense, and international relations. 

I have ‘such a headache' !”

Did President Obama miscalculate ?

 

Thursday, April 18, 2013

Celebrate the Success in Improving the Lives of Patients with Cystic Fibrosis

 

Each year the Cystic Fibrosis Foundation reaches out and has been successful in raising funds for research in cystic fibrosis to develop treatments for this terrible disease. And the progress has been enormous since 1990 in diagnosis, locating the exact gene that regulates the chloride transfer gate in the cell walls of the lungs and intestinal mucosa.

The extent of this fatal genetic flaw reaches far beyond what I can say in this blog. Cystic fibrosis kills slowly…first by starvation and wasting, and then by pulmonary insufficiency.  It is not a pleasant sight to watch a child to fail to thrive, struggle to breathe, and eventually look like a victim of famine.

There is no cure, but these successful treatments have increased the average life expectancy from 12-16 years old in 1990 to 37 in 2013. This generation has benefitted beginning in 1993 with the development of a genetically engineered enzyme that liquefies thick mucus in the lungs, and also enzymes that allow fat and proteins  to be digested and absorbed in the intestinal tract.

Cystic fibrosis is a family disease, not just by inheritance but also how it affects the finances, daily living, and resources for brothers, sisters and parents.  Untreated, it leads to a quick death, yet prevention is a daily task which can be very successful in significantly improving the quality of life for those with CF and their loved ones.

Robert J. Beall, PhD, President of the CF Foundation tell us,

“Last year was an incredible year at the CF Foundation. People like you have shown their support and dedication to finding a cure for CF. Your generous support paved the way for the groundbreaking treatment, Kalydeco™ , the first drug to treat the underlying cause of CF.


While Kalydeco is effective for about 4 percent of patients who have a specific gene mutation, this advance brings hope to all people with CF. Kalydeco has provided us with a “road map” that is already leading to the development of more promising treatments for all with the disease.


We have made real progress toward a cure, but our work is far from over.
We will not rest until a cure is found for all people with CF.
Right now, we are expanding our research partnerships with biopharmaceutical companies and laying the groundwork to develop new therapies.


As we continue to pursue every opportunity to help develop new lifesaving therapies for people with CF, it is more important than ever that patients can access these treatments. The need for our advocacy and patient assistance programs has never been greater.
To make sure that critical research and care initiatives continue we have set an ambitious goal for the 2013 Annual Fund: $2.5 million.”

Each year in localities near you there is a ‘Great Strides’ for Cystic Fibrosis Event. It is a wonderful opportunity to sponsor or be sponsored and keep fit while creating donations for the Cystic Fibrosis Foundation.  For specifics you can go to the registration page and log in.


Help make progress possible. Please join Partners in Progress.

 

Fitness and the Internet

 

 

Do you sit in an office chair for more than six hours a day? If so, your risk of heart disease has increased by up to 64 percent. Some users who are required to be on the internet most of the day use a stand-up desk and can walk or exercise in place. These handy add-ons will help remind you to get up and move around!

Mobile health applications have been around for some time already. Nike has their own remote monitoring devices, such as FitBit as well as several other provide incentives for exercise and fitness.

Mozilla has entered the arena now as well, with the announcement of several new browser add ons for their Firefox Web Browser that remind the user that it is time to take a break from computing.

Consider this, from the software developers at Firefox

“We are now a world of people who are plugged-in 24/7. We’re always looking at our computer screens and our mobile devices. It helps us stay informed, educated and entertained, so it’s a good thing!

But more and more stories are coming out in the media about how bad it is to sit at our computers/devices all the time. We need to stay active!

Guess what? Firefox gives me (and you) solutions, built right into my browser. That makes it easy to do something about it!

The easiest option is an add-on called Simple Timer. It is super customizable and allows you to select when you want to receive a notification. You can set as many as you want. I set it up to alert me every hour as my reminder to get up!

Then there’s the Take a Break add-on which flashes a little icon every 15 minutes to remind you to take a mini break – close your eyes, look away from the screen, etc. Then a pop-up box will remind you to take a bigger break each hour to stretch, get a drink of water, etc. You can adjust the timers to suit your schedule.

 

If you’re like me, you know you need to take a break but you don’t know what to do with yourself. That’s why StretchClock holds a special place in my routine. Not only do you get an hourly (that’s customizable) alert, but it gives you a suggested stretch or exercise to get that blood flowing!

 

Courage in Sports: Jerry Cahill - YouTube : CysticFibrosis

Courage in Sports: Jerry Cahill - YouTube : CysticFibrosis


"You cannot fail ! "