MS Maze

The necessity of advocating for ourselves when it comes to health care is detailed in a report by CNN Medical Correspondent Elizabeth Cohen. It is a piece of advice I shall take to heart.

“I learned that I must always remain in control, double-check everyone’s work, and trust no one completely. I must have been sheer hell to be around. But I know that my cantankerousness saved my life on several occasions.” - Actor and Author Evan Handler

The economic and political news we are witness to lately is disheartening on so many levels.

The political mudslinging is ugly and serves only to distract attention from the real issues facing our country. The economic downturn has us deeply concerned about the huge losses to retirement accounts, plummeting home values, and inflation eating away at our stagnant wages. And we are still at war.

All this talk of a deepening recession and economic crisis has me wondering. Can I still carry on about what I consider to be a health care crisis? In the great scheme of things, is multiple sclerosis and its associated financial burden important anymore? Does the enormity of our country’s financial freefall cancel out concerns about MS and other chro…

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We just received an update on a previous post, MS: Misunderstood Around the Globe. Tae Kwon Do silver medallist Kirsten McLaughlin sent this message:

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Kirsten McLaughlin Says:
September 7th, 2008 at 7:24 pm e

Hi there, I’m Kirsten McLaughlin and I just want to let you know that the decision has been overturned, im have now been awarded higher rate care and mobility components. Also thank you for your support by putting my story on your site.

Best Regards
Kirsten McLaughlin

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It’s a pleasure to share good news once in awhile! Thank you, Kirsten. Our thoughts are with you.

It gets an eye-popping response. An incredulous look. A momentary stare. That’s what happens when you get specific about the numbers. The numbers being the dollars and cents of health care.

Read the rest of my story here.

Scotland has one of the highest rates of multiple sclerosis in the world. Despite this, their understanding of MS appears to be lacking — and their system of disability benefits leaves a lot to be desired.

We’ve got to continue our quest to educate — here and around the globe.

This story is a real heartbreaker.

Exclusive from DailyRecord.co.uk: Martial arts champion hit by multiple sclerosis denied benefits

Aug 28 2008 By Lachlan Mackinnon

A MARTIAL arts champion whose life was “destroyed” by multiple sclerosis has been refused benefits - because she can still talk.

Tae Kwon Do silver medallist Kirsten McLaughlin, 33, requires round-the-clock care from husband Alan, 34.

But she has been denied disability living allowance as the authorities claim she only needs “comfort and assistance” and can still “communicate”.

Click here to read the full story at DailyRecord.co.uk

Patients with chronic illnesses, who could need the drug for years, are getting hit hardest by the change, says Dan Mendelson, president of Avalere Health, a national health-policy analysis firm.

“It gets to the fundamental question of ‘What is insurance?’ ” he said.

As advances in medicine become ever more costly, insurance that requires heavy cost-sharing from patients for pricey drugs is likely a “microcosm of medicine’s future,” predicts a commentary in a recent New England Journal of Medicine.

The authors warn: “At some point in our lives, we may all join that small pool of users of high-cost care.”

Read article in its entirety:

There are many tools at our disposal, and if we wish to maintain our independence, we need to make use of them. I would feel pretty foolish if I had to stay home and miss an outing because my pride would not allow me to use a cane in public, or to pull out my handicapped parking placard.

Life is too short and too uncertain to allow any of it to pass us by. If it exists and will help you to stay in the game, I say take advantage!

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In previous posts, What Health Care Problem? It’s a Great System!, Multiple Sclerosis and Stress Go Hand in Hand, and How About a Dose of Stress with your Injection, I chronicled the monthly runaround involved in filling my prescription for Copaxone (R).

Well, I’m happy to report that as of this month — seven months into the saga — the powers that be (that would be my beloved insurance company) have finally corrected the problem. According to a customer service rep, my troubles are over. Next month, when it is time to reorder, it will require only one phone call.

Oh, happy days! Just the same, I think I’ll hold the celebration until next month.

Hmmm… Now if we could just do something about that Tier 4 co-pay… but that’s another issue altogether.

Yours truly is featured in the summer 2008 issue of MSFocus Magazine. The article, “The Financial Reality of Multiple Sclerosis” is on pages 10-11.

MSFocus - Multiple Sclerosis Foundation

Every single day, Multiple Sclerosis Central, and The Health Central Network’s other health-related sites, are visited by people from every walk of life, as they search for answers.

From the Washington Post, July 21, 2008

Seeking a Cure, Patients Find a Dose of Conversation Online

and

from The Health Central Network’s Multiple Sclerosis Central, May 7, 2008

MS Patients Reaching Out Online - Jump On Board!

by Mandy Crest

There’s a lot of confusion when it comes to COBRA. What are the benefits, and who is eligible? COBRA stands for Consolidated Omnibus Budget Reconciliation Act, but that doesn’t make it any easier to comprehend. Continue…

The state of the economy is front and center in virtually every newspaper and newscast. The mortgage meltdown, stock market troubles, job losses, and increasing costs of everything from food to fuel are impossible to ignore. These are trying times for the family finances. Health care is a major budgetary item and can take quite a bite, but if someone in your household lives with a chronic condition, such as multiple sclerosis, that bite could be a whopper. Continue…

An editorial in today’s New York Times reveals the not-too-surprising results of a new national survey on health care.

The overall economy and the rapidly escalating cost of basic health care are forcing people to ignore health problems.

How has the economy impacted your personal health care decision-making process?

While politicians have been debating endlessly over the best ways to reform the American health care system, the plight of American patients has rapidly worsened. Maybe I’ll Get Better on My Own June 30, 2008 Editorial, The New York Times