Paperwork of Living With Multiple Sclerosis-The Proverbial Weakest Link

In our US healthcare system, medical insurance makes or breaks way too much. As the health care reform at least rolls out the affordable care act is an enigma to most and to anyone impaired or ill there are potential catastrophic choices looming in options.

When we the people in the mid 1980’s through everything from federal legislation to divestment of stocks by colleges, towns, organizations and more of businesses supporting South Africa we the people were credited as pressuring the South African Government to embark on negotiations ultimately leading to the dismantling of the apartheid system .. no drones, no troops intervening. We the people simply did the right thing.

Now days it is not any particular  insurance company, nor any worker, nor any death squads – misery and death by insurance cancellation is all about your neighbors, friends, family and even the face in the mirror. 

IRA portfolios that include health insurance stocks are all about ‘your demand’ for profit. Profit from health insurance does not require me to explain the math.

Living with a chronic disease like MS is a hugemongous expensive. Too often like trying to dance through a mind field. Hope drives, neuros encourage, Big Pharm promises but with the dawn of MS cognitive impairment and you start to miss dotting some i’s and crossing some t’s you open the door to the profiteers.

Bean counters are not the bad guys, nor is the representative on the phone they are just doing their job. It’s you who demand the profit. Take a look in your IRA, your neighbors’s IRA, or your family and friends. Find health care companies or medical insurance company stock and you will find the enemy.

Of course this is 2013 and it’s all about money not what’s right. Yet divestment in portfolios including health insurance, health care, Big Phama, etc could have the same powerful impact on change to what is right! Profit exploits, profit has no conscience, profit, not people, cancels insurance. Look in the mirror.

As always I am thankful to MultipleSclerosis.net for inviting me to share the longer versions of our story and while our story is specific to MS, sooo many families face similar nightmares caring for special needs children, aging adults and more. 

“Paperwork of Living With Multiple Sclerosis-The Proverbial Weakest Link” Posted by Patrick Leer—May 15th, 2013

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Long-Term Care Insurance Reform

“I wanna be on the cover of Forbes magazine

Smiling next to Oprah and the Queen”

‘Billionaire’ by Travie McCoy

When Forbes Magazine turns its capitalist focused eye on Long Term Care reform it is worth noting.

Make Long-Term Care Insurance Part Of Health Care

“Why not make insurance for long-term care services and supports part of health care coverage?
It is a radical idea that turns the current model—which often treats long-term care insurance as an element of retirement planning—entirely on its head…”

“We have to try something new” concludes the article.

It’s been thousands of years of mythology plus thousands of years of knowledge since ol’ Oedipus solved the Riddle of the Sphinx, ‘What walks on four legs in the morning, two legs at noon, and three legs at night?’ Yet how many of us deny daily our own aging and eventual need for care.

Only a third of all adults say they have even talked with family or a friend about providing care to them in the future or had purchased disability income insurance or looked into independent or assisted living arrangements or purchased long-term care insurance.

Only 4 in 10 adults have set aside funds to cover additional expenses or signed a living will or healthcare power of attorney.

How many can even afford such options?

As a result … family caregivers provide about 80 percent of all long-term care services in the U.S; an estimated 120 million adult Americans (57 percent) are either providing unpaid care to an adult family member or friend or have provided this care in the past.

When the baby boomer generation starts walking on three legs, how long before this house of cards comes crashing down?

Yes! We need to try something new!

91% of caregivers use Facebook

“91% of caregivers are using Facebook another 29% are using blogging sites …”

OMG I’m a tribal elder! While Facebook celebrates its 8^th birthday next month, I’ve been a spouse caregiver longer than there has been Facebook or even Google, longer than smart phones, matter of fact - longer than either cell phones or home PCs. Telephones had cords and neighbors would leave hand written notes in the door, “going to grocery store this afternoon, call if you need something.”

“… This provides a unique opportunity for marketers trying to sell healthcare products and services generally targeted to caregivers or for those trying to build goodwill from a Pharma corporate standpoint.” 

A century and a half ago Edgar Alan Poe asked, “Is all that we see or seem but a dream within a dream?” – Is today all that we see or seem but an opportunity to sell?

That’s a helluva a lot of people reaching out into cyberspace to try and find others like themselves, or trying to juggle the shrinking time for research or simply staying in touch as caregiving isolates.

Shouldn’t such phenomenal usage statistics be a unique opportunity for sharing and caring rather than marketing? Or am I simply naïve?

Through 22 years of spouse caregiving and juggling basically single parenting I’ve marveled in awe of the technological and scientific advancements of those two decades.

Yet also wondered why there are still so many caregivers? Why does Patti still have MS? Whatever happened to dreaming of things that never were, and asking why not? What if … we focused instead on ‘reducing’ the need for and cost of Big Pharma, health care products and services?

Am I the only one who finds it more than strange that the last time a disease (Polio) was defeated was before the computer age?

In a society where each day more people walk around staring into smart phones and walk right into Patti’s wheelchair, I am left wondering about the odds of hope for all that we see or seem to ever be all it could be. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Affordable??? Care Act

As of January 1, 2011 our family health insurance premiums for myself and college age daughter increased 35%, the largest jump ever.

Patti’s Medicare supplemental insurance premium has increased 18% (another record jump), gratefully her Medicare insurance premium remains unchanged since January 2008.

While more provisions of the Affordable Care Act also kicked-in January 1^st, this financial kick in my stomach has left me more than conflicted about health care reform.

Our health insurance premiums were more ‘affordable’ before the Affordable Care Act. 

+35% +18% + unchanged = “affordable care” is a formula I am having problems embracing. 

Now I ‘get’ that this is not a “me” issue and I have to try and see the bigger picture. Yet with so many people unemployed, and income not rising for those fortunate to be employed - who can afford any premium much less welcome higher premiums for the better good?

“The clock is ticking for health care reform …” Health care reform 101: What will kick in Jan. 1? 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

Financial Help for Caregivers

From November/December 2010 Newsletter Centers for Medicare and Medicaid Services ...

 Financial Help for Caregivers

"There are several programs that can help you save money on Medicare premiums, drugs, or basic living expenses. Make sure you explore these options:

Medicare Savings Program (MSPs)

   There are programs that help millions of people with Medicare save money each year. States have programs for people with limited income and resources that pay some or all of Medicare’s premiums and may pay Medicare deductibles and coinsurance.

Extra Help With Medicare Prescription Drug Plan Costs 

   You may be able to get extra help to pay for the monthly premiums, annual deductibles, and co-payments related to the Medicare Prescription Drug program.

State Pharmaceutical Assistance Programs

  Many states and the U.S. Virgin Islands offer help paying drug plan premiums and/or other drug costs. Select a state or territory below then click “Search” to see if any programs are available in your area.

Explore national and local charitable programs with Benefits Check Up, created by the National Council on the Aging (NCOA)

   "As of Thursday, November 18, 2010 we have helped 2,645,136 people find over $9.1 billion worth of the annual benefits they deserve."

Visit GovBenefits.gov to learn about government assistance programs

   What is Benefits.gov? The official benefits website of the U.S. government - Informs citizens of benefits they may be eligible for - Provides information on how to apply for assistance

Apply for Medicaid

   If you can't afford to pay for medical care right now, Medicaid can make it possible for you to get the care that you need so that you can get healthy and stay healthy.

  

... of course, this newsletter was likely prepared before recent elections, and well politics can leave programs like leaves twisting in the wind  …

Republicans grill Obama's Medicare-Medicaid chief

"Previewing the partisan healthcare battle to come next year, the Obama administration's new head of Medicare and Medicaid squared off against irritated Republicans on Capitol Hill for the first time Wednesday in a renewed debate over the healthcare overhaul …"

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders

caregivers of veterans

Caregivingly Yours salutes ‘caregivers of veterans’.

I thought I had seen everything until I read a report released today from the National Caregiver Alliance that caregiving grows more complicated and demanding when the people cared for are combat-era veterans with service-connected disabilities and illnesses. 

CAREGIVERS OF VETERANS - SERVING ON THE HOMEFRONT

Everything about this is wrong. The report should have a ‘shock and shame’ affect on we the people. Politicians get too much mileage out of legislation that is swallowed by bureaucracy.  We NEED to make this right!

“They lost legs and I walk.

They lost minds and I think.

Sometimes, they lost lives and I live.

I am grateful to them. Grateful!”

Maya Angelou

How paradoxical that on this same day, ground was broken in Washington DC for a disabled veterans memorial?  The American Veterans Disabled for Life Memorial 

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders

new healthcare: don’t ask don’t tell

   With my first annual check up since healthcare reform approaching, I received a letter from my doctor’s office.

   Reaching for my letter opener I mused, “Ooooh! Let’s see what healthcare reform has brought?”

“If we choose to address any health problem or concern at the time of the preventive physical, we will bill you an additional visit … and some insurance companies add a second co-payment … “ 

“…many patients feel this is a time to also ask us to evaluate problems or concerns … these issues take away from the time we have scheduled to spend with you …”

WTF! What happened to the much ballyhooed preventive services?  Health questions or concerns take away from ‘our’ time spent together? Who wrote this? … Is arguing with a piece of paper considered a health concern? OMG, I just cost myself four co-pays.  

Jumping on line to healthcare.gov I learned the error of my thinking. It seems the trumpeted preventative services (at no additional cost) of the Affordable Care Act apply to people enrolled in health insurance policies "created after" March 23, 2010.

So since I had existing health insurance, let me get this straight. If I do not ASK about any health problems or concerns, and my physician chooses not to TELL me about any health problems or concerns then … well, ‘yes we can’ be healthy. You just gotta love Obamacare.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders

Dollars for Docs

Is your doctor taking payments from drug companies for speaking and consulting?

“we are inviting every medical patient in the country to join this investigation. The database on our website includes every payment by seven drug companies that have publicly reported since 2009. We invite readers to type their doctor’s name into our search engine and find out whether he or she has received money from pharma.”  Stephen Engelberg, ProPublica

DOLLARS FOR DOCS

“The raw numbers on payments, which represent only a small fraction of the industry’s total outlay, are staggering enough: More than $257 million to some 17,700 doctors and other practitioners.”

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders

hubris is a disease

"The fact is that we would have had comprehensive health care NOW, had it not been for Ted Kennedy's deliberately blocking the legislation that I proposed” former US President Jimmy Carter said. “It was his fault. Ted Kennedy killed the bill."

Slack jawed I’ve surfed the net over this squabble absolutely stunned that ‘pundits’ and news seem more concerned with political legacies than ‘getting’ the toll this bickering cost.

30+ years of people’s health, life and death have been impacted. Big Pharma and Big Medicine have infected the US economy perhaps irreparably. Rising medical bills have cost many families everything. U.S. residents without health insurance soared to a record high last year as employment-based coverage plummeted.

Championing health care reform in the 1970’s, Sen. Ted Kennedy trumpeted, “We are the only industrialized nation in the world outside South Africa that does not have universal, comprehensive healthcare insurance.”

Kennedy pulled out of a comprise bill with then President Gerald Ford. OK I can get why accept compromise when waiting a year or so and the Democrats might put together their own. 

Of course no one, not even his mother, envisioned Jimmy Carter winning the Democratic Party nomination.

However he did and went on to win the 1976 US presidential election. Now with control of both the White House and Congress health care reform became a squabble between Carter and Kennedy centered around implementation.

“He (Kennedy) did not want to see me have a major success in that realm of life,” Carter said.

Neither would blink and history swept the moment in time aside. Sen. Kennedy chose to challenge President Carter in the Democratic primaries of 1980. Beat Carter, beat Reagan, and then he could push through the legislation he wanted. … Sigh! Hubris is a disease.

Decades have passed, real people’s lives and health have been affected every day.

Time magazine in 1979 reported that health care reform could cost an estimated $130 billion. What are we talking these days in the trillions?

Whenever a man has cast a longing eye on offices, a rottenness begins in his conduct.  

~Thomas Jefferson

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders

disruptive behavior in health care

I know the values and bedside manners of classic TV doctors like Hawkeye Pierce, Cliff Huxtable, and Marcus Welby were fiction but I did not realize they were fantasy.

            

What do you do when real reality is weirder than reality TV? 

"… surgeon storming out of the operating room, leaving others to finish the job… 

… doctor refusing to wait for an anesthetic to be applied to a baby, and performing a circumcision that left the baby in terrible pain… 

… dropping instruments on the floor, ignoring an offer of replacements, and using the contaminated items on a patient…”

Pennsylvania agency reports 'disruptive behavior' in state health care 

Hey! Can’t we all just get along or at least play nice while I’m bleeding here?   

“…the doctor ignored a concern raised by a nurse … nurses often react to intimating doctors by avoiding communication with them”

Or my personal favorite and why you should always include duct tape in preparing for any doctor’s appointment …

“… when doctors and patients talk, the doctor interrupts after an average of 18 seconds"

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

help needed: dragon slayers

Where have you gone, Dr. Jonas Salk

A nation turns its lonely eyes to you 

(Woo, woo, woo)

Some may remember, most cannot even imagine April 12, 1955 …

“Americans turned on their radios to hear the details (polio vaccine field trials), department stores set up loudspeakers, and judges suspended trials so that everyone in the courtroom could hear. Europeans listened on the Voice of America.”  

The vaccine is "safe, effective and potent."

“ … church bells were ringing across the country, …  parents and teachers were weeping“ "people honked horns, blew factory whistles, fired salutes, … took the rest of the day off, closed their schools or convoked fervid assemblies therein, drank toasts, hugged children, attended church, smiled at strangers, and forgave enemies."

The dragon named polio was slayed. The dragon slayer’s name was Jonas Salk (1914 – 1995).

Why has over half a century of medical science come and gone without another dragon slayer?

Maybe it has more to do with heart than science?

Heart is persevering …

   In those days discrimination from Jewish quotas restricted Salk’s education and employment opportunities.

Heart is courageous …

   When confronted with who would take the risk of human testing after his successful tests on laboratory animals, Salk his wife and children allowed themselves to be human guinea pigs. “I will be personally responsible for the vaccine."

Heart is altruistic …

  Edward Murrow: “Who owns this patent?”

  Jonas Salk: "No one. Could you patent the sun?”

Half a century later man has walked on the Moon, machines have rolled around Mars, yet why have we not cheered the defeat of another disease? Are Prozac and Viagra to be legacies of our times? ... We need less focus on patents and more heart and passion in medical science. We need dragon slayers.

Caregivingly Yours, Patrick Leer 
web site: http://caregivinglyyours.com/ 
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders 

U.S. scores! ... dead last in healthcare

"... when a country fails to meet the needs of the most vulnerable, it also fails to meet the needs of the average citizen ..."


Mirror, Mirror on the Wall: How the Performance of the U.S. Health Care System Compares Internationally, 2010 Update


Overall rankings:

1. Netherlands
2. United Kingdom
3. Australia
4. Germany
5. New Zealand
6. Canada
7. United States

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders