Wednesday, December 31, 2008

Brass and Ivory 2008 - The Blog In Review

Lots of things have happened this year

  1. PhRMA discusses Pharmaceutical Samples and wants to be 'Sharing Miracles' but misses the boat (imo)
  2. When the topic of drug costs comes up I ponder - The Value of Money or the Value of Health - What do you see?
  1. My 19-year old feline companion, Joshua, dies and leaves a hole in my heart.
  2. Next we discuss Fear and Anxiety - What are your dreams?
  3. Take notice of stealth marketing in PR for MS - Ogilvy and Betaseron
  1. Following a most stressful few months, I Join the MS Party (ie. Relapse)
  2. Random Thoughts - How a few simple words and break down walls
  3. When will we have the option of generic MS self-injectable drugs?
  1. The lucky ones with 'good' insurance just may become unlucky
  2. Time to go Surfing the Magnetic Tube
  3. MRI results comes in - Sometimes "Going with the Flow" is not so easy
  1. The Carnival of MS Bloggers #10 presents a Top Ten List for every MSer
  2. I begin to tell MY MS STORY with Eyes in the Back of My Head
  3. Continue story with A Pain in My Neck and Tears on My Pillow
  1. We should often ask ourselves - Who do you Trust?
  2. What do you know about 4-AP, Fampridine-SR, and Multiple Sclerosis
  3. Introducing The Bioentrepreneur and Fampridine
  1. Pharma wants you to walk faster and easier for $10,000
  2. Small patient populations - Big drug prices
  3. Price Gouging in extremely vulnerable and captive market
  1. It's Gonna Be a Great Day as I got hired by The Health Central Network
  2. Repeat After Me - "This too shall pass"
  3. We learn about the National MS Disease Registry Act
  1. More of MY MS STORY - How am I going to pay for this?
  2. Paging Dr. Google, or, Consulting With the Homies
  1. I plan to be Talking to the Big Guys
  2. Psychiatric Help 5 cents - The Doctor Is In and the Mental Health Parity Act
  1. Interviewed for MS Momentum - Ensure your Insurance? Crazy MS!!
  2. The Epstein-Barr Virus and and the MS Immune System
  1. Can't decide where to inject? read Needle Nostalgia - Copaxone and Me
  2. Losing heat in the house - Don't know if I should laugh or cry
  3. Peace To You All and a Happy New Year!!
Thank you for continuing to read Brass and Ivory. I'm appreciative of your patronage, friendship, and support. Here's to 2009!!

Monday, December 29, 2008

Carnival of MS Bloggers - Submissions, Please

New Year, New Resolutions, New Hopes and Dreams

The next Carnival of MS Bloggers is planned for New Year's Day, 2009.

Please submit your posts via email. or you will force me
to 'swipe' and feature unsuspecting MS bloggers.

Look forward to seeing what you share.

Thank you.

Wednesday, December 24, 2008

Silent Night by the original Straight No Chaser

Hope you enjoy this taste of Straight No Chaser, a men's acapella group formed at Indiana University in 1996. After a few old videos went viral last Christmas season, these guys have reunited, recorded a new album, and are on the touring circuit.

The video quality may be homemade, but the sound is golden. Enjoy.

Merry Christmas and Happy New Year!!

As a special bonus-----click here-----for the most awesomest recording of

The 12 Days of Christmas!!!

(turn your speaker on first)

Monday, December 22, 2008

Post Winter Solstice and Free Falling

Has anybody noticed that today was longer than yesterday?

I'm looking forward to more sunlight and longer days. The winter blues suck.

On a different note, anybody remember the Tom Petty song which went....

'Cuz I'm free!!! Free falling.... Yeah I'm freeeeeee.... freeeee falling!

Well, if that makes you curious, then you ought to read my latest post over at The Health Central Network.

I may not announce each time a new post is up, but I do appreciate your comments and support none the less.

In fact, after some unsavory bullying received by some "probable MS" folks on another site (yes, Linda, I know I shouldn't have gone back there. I should just stay here where my bloggy friends like me and appreciate the research I find), I really need your humor and kind words.

And, if you detected a bit of sadness, you're absolutely correct.

Saturday, December 20, 2008

2008 Medical Weblog Awards - Best Patient Blog

The 2008 Medical Weblog Awards Sponsored by Epocrates are open for NOMINATIONS!!

The 2008 Medical Blog Awards

Brass and Ivory has been nominated. However, it takes more than one nomination to make it to the "finals" for voting. So far the following folks have kindly put Brass and Ivory's name in the hat.

Doc - Mind, Soul, and Body
Nina - Planning for the Unpredictable
Karla -
Ivy - Life with MS & EDS
Jen - MS Strength
Connie -

I appreciate your kind support and encouragement. Makes me smile. :)

In any case, head on over here to nominate your favorites. The more voices the better.

Friday, December 19, 2008

WSJ reports - Elan CEO Defends Tysabri Sales, Citing 'Good Progress'

Elan CEO Defends Tysabri Sales, Citing ‘Good Progress’

By Jeanne Whalen
December 19, 2008 @ 3:06 pm

Elan is looking forward to the end of 2008. A slew of disappointments have grounded the biotech company’s once high-flying shares; they’ve fallen more than 70% this year.

Shareholders are grumbling, including one big one who is so fed up that he’s called for the ouster of CEO Kelly Martin.

As a snowstorm hit Health Blog HQ today, Martin braved the weather to come by, defend his record and talk about how he’s trying to turn things around.

First, Tysabri, the multiple sclerosis treatment Elan sells with Biogen Idec. The drug will have sales of nearly $1 billion this year. Sounds great, right? Blockbusters are hard to come by these days. But some shareholders think sales should be a lot brisker, given Tysabri’s efficacy advantage over other drugs.

Female MS Patient in the US dies from PML after 14 months on Tysabri.

I return from Christmas shopping and find this news bit (from Bloomberg Health New). My heart goes out to this patient's family.

If I remember correctly, this woman began experiencing symptoms of PML in September (information based on a comment left on Kim Fabrizio's blog).

Biogen, Elan Shares Fall After U.S. Tysabri Patient’s Death

By Elizabeth Lopatto

Dec. 19 (Bloomberg) -- Shares of Biogen Idec Inc. and Elan Corp. fell after Biogen said a multiple sclerosis patient who developed a severe brain infection after taking the drug Tysabri has died.

Biogen declined $1.26, or 2.6 percent, to $46.75 at 4 p.m. in Nasdaq Stock Market composite trading. Elan fell 35 cents, or 7.9 percent, to close at 4.10 euros in Dublin trading.

Cambridge, Massachusetts-based Biogen was informed of the American woman’s death two days ago, company spokeswoman Naomi Aoki said in an interview. The company reported on Oct. 29 that the patient had been diagnosed with the brain illness, progressive multifocal leukoencephalopathy. The death is the first among four cases of the brain illness reported since Tysabri was reintroduced in the U.S. in 2006.

“Given the expected negative attention that this death will attract in the medical literature and media, we believe there is increased risk to owning shares of both Biogen and Elan,” wrote Christopher James, an analyst for Rodman and Renshaw, in a note to investors.

Tysabri generated $597 million in sales in the first nine months of the year. It is Biogen’s second-best-selling medicine after the MS drug Avonex. Biogen and its marketing partner, Irish drugmaker Elan, pulled Tysabri from the market in February 2005 after three patients, two of whom died, contracted PML.

The patient had received 14 Tysabri infusions before becoming ill, Biogen reported in a regulatory filing in October. Aoki declined to comment on the type of treatment for PML the patient received.

Since Tysabri’s reintroduction, three European patients have contracted PML. Biogen and Elan reported one case on Dec. 15 and two others on July 31.

48,000 Patients

More than 48,000 patients have taken Tysabri, Biogen told investors on Oct. 21, when the company released its earnings. Chief Executive Officer James Mullen said 100,000 patients will be taking the drug by 2010.

PML is included in Tysabri’s prescribing information as a possible side effect in 1 of every 1,000 patients taking the drug. The condition occurs when the JC virus, named with initials for the first patient diagnosed with it, evades the body’s immune defenses and penetrates the brain, causing irreversible damage.

The U.S. Food and Drug Administration approved Tysabri’s return to the market in June 2006 because research showed the treatment is twice as effective as other MS drugs. At the same time, the agency mandated strict measures to monitor side effects.

Neurological Disorder

MS is a neurological disorder that robs people of muscle control and balance, sometimes leading to damaged vision and paralysis. The disease, which affects about 2.5 million people worldwide, is caused when the body’s immune system attacks the protective coating of nerve fibers.

Tysabri, given intravenously once a month, is designed to suppress the immune assault and is one of five immune-suppressing therapies that are known to cause PML. The others are Roche Holding AG’s CellCept, Biogen and Genentech Inc.’s Rituxan, Genzyme Corp.’s Campath and Genentech’s Raptiva.

To contact the reporter on this story: Elizabeth Lopatto in New York at

Last Updated: December 19, 2008 16:21 EST

Another version of the same story:

Biogen says Tysabri PML patient dies in U.S.

Fri Dec 19, 2008 4:52pm EST
By Toni Clarke

BOSTON (Reuters) - Biogen Idec Inc said on Friday that a multiple sclerosis patient who had been diagnosed with a rare brain infection while taking its drug Tysabri has died, sending the company's shares down nearly 3 percent.

Biogen and its partner Elan Corp Plc disclosed the case in October. Naomi Aoki, a spokeswoman for Biogen, said the company learned of the patient's death earlier this week.

Tysabri is seen as crucial to the growth of both companies. The drug was temporarily withdrawn from the market in 2005 after it was linked with a rare brain infection known as progressive multifocal leukoencephalopathy, or PML.

The drug was reintroduced in July 2006 with stricter safety warnings.

So far, there have been four new cases of PML, an infection rate that is still less than the one in 1,000 warned of in the drug's label. Nearly 18,000 patients have received at least a year of Tysabri. But investors are watching to see if the rate increases, and they are also looking at how successfully patients can recover.

"While we continue to believe the benefit/risk profile of Tysabri as favorable, we believe this death could lead the FDA and physicians to alter how future PML cases are managed," said Christopher James, an analyst at Rodman & Renshaw.

The patient who died was a United States patient who had received 14 monthly infusions of Tysabri as a stand-alone treatment. Previously she had received other therapies.

After developing the brain infection, the patient was treated with a procedure known as plasmapheresis, in which blood is removed, cleared of the drug, and replaced.

While the U.S. patient died, two patients who developed PML in Europe, and whose cases were announced in July, appear to be recovering following treatment, even though one had not been expected to survive. Earlier this month, Biogen announced that a fourth patient had developed PML. This patient, in Europe, is still alive.

The European patient that had not been expected to survive had developed a condition known as immune reconstitution inflammatory syndrome, or IRIS. This occurs when the immune system, in eliminating an infection, produces an excessive inflammatory response that can worsen symptoms.

The patient was treated with corticosteroids.

Geoff Meacham, an analyst at J.P. Morgan, said it seems likely the U.S. patient, having gone through plasmapheresis, died of IRIS, and that since the European patient recovered, it might be possible to manage IRIS using steroids and close monitoring. Biogen declined to confirm this theory, citing patient privacy.

"In our view, the rate of PML is now critical to assessing the launch trajectory, and the regulatory outlook, should it stay in the 1/1000 range," Meacham said in a research note.

© Thomson Reuters 2008. All rights reserved.

Wednesday, December 17, 2008

MS and Sleep Disturbances - Interviews Sought

Hi bloggers friends!!

I received the following email last week from Heather Boerner, the writer who interviewed and quoted me in the Winter '08-'09 Momentum Magazine. Her friend is writing a piece on MS and sleep disturbances (not MS fatigue-related).

My experience with Heather was positive. If you are interviewed and quoted, I'd love to hear about it. Thanks, Lisa

Hi all,

I'm sending this to you because you've been great sources for me before for stories I've written for Momentum magazine on MS. Now I'm coming to you on behalf of a writer friend who is doing a story on MS and sleep problems. I think she means something other than the fatigue that's so abundant in MS.

Here's what she's looking for: Someone with MS under the age of 60 who has sleep disturbances. She has lots of experts, but obviously wants to get in touch with people who can speak about the issue from personal experience.

If you are this person, or know someone who might be, please contact her directly at Feel free to tell her I sent you.

I hope you are pain-free today and doing well. Please know I'm thinking of you.


Tuesday, December 16, 2008

The MS Community Keeps Growing and Growing - Welcome our New Friends

Meet Katherine, newly diagnosed in July 2008, whose blog is Indicating an Intrathecal Production.

I’m a professional graphic designer with a partner of seven years who is beyond supportive, and the most incredible family and friends anyone could hope for — my best friend since we were just five is now a clinical study coordinator for autoimmune research. I have been humbled by the amount of love I realize is — and has been — a part of my life.

Another great new blog is In It For the Parking written by Rae...

I named it “In It For The Parking” because that’s my attitude towards chronic illness. It’s a part of my life… not my entire life, and I choose to take notice of the silver lining around the cloud as often as possible.

Proud mommy to two new Beagle puppies, meet Kerri who blogs at LATTE' BUDDIES! She's an Air Force wife (retired), elementary school teacher, and a first-year empty nester. Kerri doesn't blog about her MS much, yet, but assures me that she does plan to in the future.

Robert has started a new blog called Conquer Multiple Sclerosis.

I have no idea what Multiple Sclerosis has in store for me next, but I now look into the future with unbridled optimism and a knowledge that I will be alright. I take each day for what it is and make the most of it. Like me, you can make a difference in your own life and in the lives of others. We did not ask to have multiple sclerosis, none of us did, but we can definitely use it to help others in the end.

Life in the Slow Lane who shares.....

I unwillingly had to accept that my body is now eating my brain. I have lived in oblivion for most of the year knowing that this disease had affected my cervical spine. I would always brag that my brain scans were clear. Then bam. "You have some small spots." That is not what I wanted to hear. No, no, no.

And finally, please welcome Linda whose blog ms4tune is only days old. Linda says....

Welcome to my blog! I am an African American mother who was diagnosed with Multiple Sclerosis in 2005. Married with two children, I often am asked about my diagnosis by many other people of all races. Because I am also a member of the Soka Gakkai International (SGI -, I am often asked how my buddhist pratice equips me to deal successfully with this auto-immune disease. One thing that my practice has helped me learn is that there is always both a positive and negative way to react to every experience. That is why my blog is titled “misfortune” because along with the physical challenges I experience every day, MS has brought me a boatload of wonderful experiences and realizations. I hope to share some of those with you in future posts - not to brag about myself, but to help you (and me!) remember that all is not lost, and that even with this type of health challenge there is always a great deal for which to be thankful.

Welcome to the MS Blogging Community!!

Monday, December 15, 2008

Tysabri in the News AGAIN!! Is the fear machine working overtime?

Thomson Financial News

UPDATE 2-Biogen says new brain infection linked to Tysabri
12.15.08, 12:51 PM EST
By Ransdell Pierson

NEW YORK, Dec 15 (Reuters) - Biogen Idec Inc (nasdaq: BIIB) said on Monday it notified regulators of a new case of a potentially deadly brain disease in a patient being treated with its Tysabri multiple sclerosis drug, the fourth such case reported globally this year.

The latest case of the brain infection, known as progressive multifocal leukoencephalopathy (PML), was seen in a European patient who had been taking Tysabri as a stand-alone treatment for 26 months, Biogen said in a regulatory filing.

'The patient is under physician's care,' company spokeswoman Shannon Altimari said, noting it was too soon to speculate on the prognosis for the patient.

Biogen shares were off 1.3 percent in midday trading, while the stock of its marketing partner, Elan Corp (nyse: ELN) of Ireland, fell 4.2 percent on the New York Stock Exchange.

Shares of Biogen and Elan fell sharply after the drugmakers disclosed on Oct. 29 that a case of PML had been seen in a U.S. patient. In July, the companies reported two cases had emerged in Europe.

This year's four cases of affected patients, all still alive, are the first to be announced since Tysabri was withdrawn from the market in 2005 after three earlier patients developed the brain infection. Two of the earlier three patients died.

Asked why no cases were seen in 2006 or 2007, Biogen spokeswoman Naomi Aoki on Monday said, 'The drug had been taken off the market for a little over a year, and returned in July 2006.'

She said Biogen and Elan believe the superior effectiveness of Tysabri in preventing relapses of multiple sclerosis symptoms justifies its use, despite the relatively low risk of PML.


Aoki said more than 35,500 patients worldwide are taking Tysabri, and that the drug in clinical trials was able to produce a 68 percent reduction in relapses.

Rival drugs, by contrast, are able to reduce relapses by only about a third, she said.

Tysabri's package insert label cautions that patients taking the drug have a 1-in-1,000 risk of developing PML, but the overall incidence of the brain infections seen so far is 'still well within' that magnitude, JP Morgan analyst Geoffrey Meacham said in a research note.

'Overall, we would characterize this new case as completely in line with expectations at this point,' Meacham said, noting that the infrequent occurrence of PML suggests there is little risk Tysabri will again be pulled from the market.

Third-quarter sales of Tysabri rose 18 percent to $171 million, a slowdown from the 25 percent growth seen in the second quarter. Biogen said growth was tempered as doctors continue to assess the drug's risks versus its benefits.

Even so, Biogen in October reaffirmed it expects 100,000 patients to be taking Tysabri by 2010, a near tripling of the current patient roster. The company on Monday said its ambitious goal remains in place.

Multiple sclerosis, a so-called autoimmune condition that can cause progressive paralysis of limbs, occurs when an overactive immune system attacks the protective myelin sheath around nerves.

Autoimmune drugs work by taming the immune system, but in doing so some of them can leave the body prey to infections that rarely affect the general population.

Aoki said a handful of other drugs, including Biogen's own Rituxan treatment for cancer, carry warnings of increased risk for PML.

Copyright Thomson Reuters 2008. All rights reserved.

Marshmallow Fight!!!!!

Sunday, December 14, 2008

Biosimilar Drugs and NOT the same as Biogeneric Drugs

For a little history on the topic of biogeneric drugs, read the following Brass and Ivory articles:

When Will We Have the Option of Generic MS Self-Injectable Drugs? (March 25, 2008)

Generic Biotech Drugs -- The House Energy and Commerce Committee meeting to consider establishing a Regulatory Pathway for Follow-On Biologic Drugs (October 24, 2007)

Today, Gooz News published the following article which addresses a significant difference which proposed legislation will have on patients using expensive biological drugs, such as the MS disease-modifying drugs.

Biogenerics, Not Just Biosimilars

The debate over a regulatory pathway for biotechnology generic drugs is shaping up and it doesn’t look good for cost-conscious patients or anyone pulling their hair out over rising health care costs.

Last week, both Merck and Eli Lilly announced plans to expand their biotechnology divisions. While they are taking aim at proteins already on the market, both companies told the press that their new biotech drugs would not be generics in the traditional sense. They will be slightly modified versions of existing drugs that will be run through the full panoply of clinical effectiveness testing and sold at prices much closer to the original drug.

In essence, both companies are banking that the “biosimilar” legislation that now seems destined to pass Congress next year will bring into existence a biotechnology me-too industry. That’s very different than a true generic industry, which was created by the Hatch-Waxman Act of 1984 for traditional drugs.

Unlike true generics, which are exactly like the original drug, me-too drugs contain slight modifications that qualify for their own patent protection. Their clinical usefulness may be no different or only slightly improved from the original. But, because they have been put through their own clinical trials and have patent protection, they can be marketed to physicians as unique products and priced accordingly.

The results are often of marginal benefit to patients, consumers and health care plans. Me-toos are usually priced within 10 to 20 percent of the original drug’s price, and sometimes cost more if they have marketable benefits like less frequent dosing. True generics, on the other hand, usually cost less than half of the original molecule because multiple firms jump into the fray and there is no direct-to-consumer or direct-to-physician marketing to inflate costs.

Read the remainder of the article at Gooz News which ends with this:

Clearly, it’s going to take a lot of consumer and payer pressure to get legislation that offers fast and meaningful economic relief from the high cost of biotech drugs when their patents expire. Changes in patent law to enable a me-too biosimilar industry isn't even half a loaf. What the public needs is a pathway to biogenerics that doesn't require costly, duplicative clinical trials.

I've not been keeping up with recent developments, but it's time to get back into following pharma and congress.

Saturday, December 13, 2008

Update on the Homestead

Just want to leave a quick note.

As of 6pm last night, we have HEAT in the house which doesn't have to come from several blocks of wood. What a blessing this truly is!!!!

Friday, December 12, 2008

Carnival of MS Bloggers #25

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Things May Be More Than They Appear

Shauna shares
"My Zebra"

At the age of 34 I had a relatively unremarkable medical history. Typical childhood diseases, mono as a teenager in university, normal checkups at my yearly physicals. So when I went to my doctor in January of '98 with gradual weakening on my right side, I figured I had a pinched nerve in my neck and told my doc that. She conducted a neuro exam and said she wanted me to see a neurologist. She'd get back to me, but if it got worse, I was to come see her again. In the meantime she sent me for an x-ray of my neck, as a pinched nerved or something out of sorts in my neck was still a possibility.

I had the x-ray the next day but the day after that I was worse. Back to the doc I went and she sent me straight to the hospital where I was diagnosed with probable MS at the end of the day. Time from onset of symptoms to diagnosis was 6 days.

My mother is politically active, behind the scenes. So over the years people have commented to her that I probably got my quick diagnosis because of her connections. She denied it, as she had nothing to do with it, and explains that I was very lucky.

I didn't have a thick medical file to begin with, no other major or chronic illnesses, no exposure to dangerous chemicals or the like at my job, and I had an excellent rapport with my doctor. I went to see her once a year for my physical and that was pretty much it.

A couple of years ago, I was facilitating a talk given by one of the neurologists about treatments of MS. One of the questions from the audience was "Why does it take so long for some people to get a diagnosis?"

In a nutshell, a few things are at work. First, presentation. We all know (or we should know) that each individual symptom in and of itself could indicate any number of things wrong. Vertigo? Inner ear infection. Tingling in your arm? You slept on it funny or it's a pinched nerve.

Second, our medical history may have nothing in it to indicate a predisposition to neurological events. No one in my family had MS.

Third, our medical history may be jam-packed with other chronic illnesses such as allergies, cancer, chronic infections, diabetes. Other illnesses are likely to be investigated first, before MS, as you have a history of them. Doctors are taught that "when you hear hoof beats, look for the horse, not the zebra." MS is a zebra. I had only horses in my medical history.

Fourth, cost and eliminating the obvious. Working up a lab for an inner ear infection is going to cost a lot less than an MRI for a tumour or MS. If the lab comes up negative, ear infection can be eliminated from the list of differentials.

Fifth, our own ignorance. How many times, pre-MS, have we attributed our symptoms to other benign illnesses? If we have a couple of days of vertigo we think we must have a flu or inner ear infection and it goes away. Tingling in our arm? We slept on it funny and after a couple of days it goes away. And those symptoms may have been days, weeks, or even months or years apart. So do we associate one with the other? Nope. It's not until reflection after diagnosis that we can recall symptoms that may have been indicators of MS. I recalled being at the movies a few months before my diagnosis and experiencing tingling in the fingertips of my right hand. That symptom lasted a couple of days, then went away, forgotten until two years after my diagnosis when I was thinking about any possible symptoms I had long before my diagnosis.

A study was released this week that indicated that people who were obese, smoked, or had other physical or mental health conditions took one to 10 years longer to be diagnosed with MS than those without those conditions. The more medical problems someone with MS had, the more severe the disease became by the time they were diagnosed.

The results of the study are not surprising. What is interesting, though, is the level of disability reached for those whose diagnosis was delayed. One could hypothesize that early diagnosis and early treatment might delay disability, which is the point of the disease modifying drugs.

The lessons to be learned from all this info? Take responsibility for your own health care. That means eat right, sleep right, and exercise; take care of your body, know your body. Learn what you can about any other conditions you may have. Develop a good relationship with your doctor.

Once you are diagnosed with MS, you still have continued responsibility for your own health care. Not all symptoms are MS related. We still get the flu, cancer, arthritis, or Parkinson's. Just because you are the proud owner of a zebra, there's still the potential for a herd of horses to be hanging around.

Lots of blogs out there include comments about how isolating life can/does become when so much attention has to be given over to the body basics so much of the time and how it is often difficult for others to grasp the full impact of what is going on. In light of these challenges a couple of links about Living Libraries might be of interest to others.

For those that have not heard of a Living Library, a Living Library has Living Books. A Living Book is a person, that has chosen to be a public representative of a certain group. An example of how people can be, if only minds are open long enough to find out, who and what they really are. But before anything else, they are courageous people that stand by their convictions and are willing to discuss their values with others.

Maybe people have one in their area or like the idea of starting one in their area?

Singer Melinda Schneider has written a song called 'Be Yourself' which was inspired after seeing a program about one of the Living Libraries on a talk program by a well known Australian interviewer Andrew Denton.

Here's a snip from the interview (full transcript) where she talks about the trigger for the song:

ANDREW DENTON: Melinda I want to show you a clip from ENOUGH ROPE of a transvestite called Sarah who inspired you to write the song you're going to perform at the end of the show called Be Yourself.

MELINDA SCHNEIDER: I just loved the story of the living library.


MELINDA SCHNEIDER: And his or her story was a fascinating one. Yeah I just I loved the acceptance of his wife when she you know when he told her that he was a transvestite and he'd been hiding it from her and she said I don't care what you do, just don't lie to me and they stayed married and you know he was able to do what he wanted to do and you asked him you know if there was anyone out there going through what you went through what would you say to them and he said be yourself. Everybody else is taken.


MELINDA SCHNEIDER: And it hit me like a tonne of bricks because it was exactly what I was going through at that very time coming out of my divorce and getting back to my old self again and I just loved it.
The quote to 'Be yourself. Everybody else is taken' and the Living Libraries' active way of reducing prejudices and providing positive meaningful experiences struck a chord. Seemed like not a bad thing to share.

This concludes the 25th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on January 1, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, December 29, 2008.

Thank you.
Comments for this post.

Thursday, December 11, 2008

And the Fire Blazes On.....

Time for an update in Smokey's Cafe... wait, I mean living room.

A very nice man from the special Boiler fixin' services came to the abode Tuesday afternoon to repair the more effective source of heating for the home.

Why was he so nice you ask? Well, it's because he used to play french horn of course. Even got to learn about the other members of his family who are musically inclined.

But actually, it's because after working on the system (draining water from system, removing broken part, installing broken part, refilling the system with water, and trying to make it work) for almost FOUR HOURS (no, he wasn't paid for the time, but for the job), he ever so humbly had to inform us that the circulation pump was not working.

Hey, I remember pondering that circulation issue...... So, yet another part needs to be ordered, but it shouldn't take a full week like this part had.

In the meantime, it's continuing to look a lot like Christmas.... as it's supposed to snow tomorrow.

Anybody got some Chestnuts? We could have Chestnuts roasting on an open fire...

Ha!! I'm too much, I know. LOL. By the way, if you are looking for the Carnival of MS Bloggers, come back tomorrow. It's late.

Also, I went to PT yesterday for our first real session. Who know that just standing and balancing was SO VERY, UNBELIEVABLY EXHAUSTING? I didn't, and I get to do it again tomorrow.

Tuesday, December 9, 2008

Reports of Suspected PML in Tysabri Use - Not Alarming

Ever wonder how investors view news articles and MS patients in general? Or how often do you consider that online conversations are being monitored?

Read - Suspected PML Cases for Biogen/Elan MS drug (Tysabri) Not Alarming

Sunday, December 7, 2008

Keepin' Cozy in the Casa

Through the old fashioned manner of heating by fire, we are able to get the living room a toasty 67 degrees when the fire is ablaze. Upstairs, it was a mild 50 degrees when I woke up this morning, and every morning for that matter so far.

Here's the lovely culprit:

Yesterday, the kittens were snuggled on the couch and I thought they might need some extra coverings. Surprisingly, they both stayed under this blanket for quite some time before ceasing to look like "a bug in a rug" times two.

Friday, December 5, 2008

Don't know if I should laugh or cry....

Remember Baby It's Cold Outside... Inside Too!!! ?

Here's a Recap and Update:

For awhile - The Boiler which heats the water that then circulates throughout the house's radiator system has been making thumping noises. We thought it was air in the radiators which had to be released. Wrong!!!

Tuesday night - The Boiler gave up the ghost. Oops, we thought it was a pump which pushed the hot water through the pipes because certain radiators were not getting any hot water/heat. Wrong again!!!

Wednesday morning - Called for delivery of a Cord of firewood to be delivered same morning. Very cool. For those who aren't familiar with what a Cord of word is, it is 128 cubic feet of wood, 8ft x 4ft x 4ft. That's A LOT of wood to burn in the wood stove (fireplace) in the livingroom of this old house.

Wednesday evening - Finally, a plumber who deals with Boiler/Radiant Heat came to assess the necessary repairs. Turns out that a part which controls filling the water tank and maintaining the required water levels had gone out. Very bad!!!

It is a part which must be ordered (rush please) and installed. Then we hope that while it was malfunctioning further damage was not done to more of the system. Yikes!

Thursday - A cold front is moving in and the firewood must be stacked in racks and off the driveway. Here's the before pictures with my Mom as size comparison:

It took us almost five hours to stack the wood. It was dark by the time we finished so no immediately after photos. Sorry.

Friday morning - I look out the window from upstairs and could almost cry (if I weren't so damn exhausted, and sore, and really walking funny, etc.). The ground was a little too soft for our liking and we had placed the feet of the rack on some bricks so that it would not sink and lean.

Ha! I guess the joke's on us. This rack which measured 8ft x 4ft fell over during the night and spilled half of our supply of wood. I'm really unhappy about this turn of events.

So here's some photos of our various stacks of wood. What didn't fit in one of these is located in the garage. Did I mention that I'm more than tired?

But the very small rack on the front porch still looks cute:

Thursday, December 4, 2008

Welcome Ivy and Chekoala to the MS Party

"Hey! I’m Ivy. I’m in my mid-30s and live in the Philly area with my two wonderful girls and my fantastic husband. Just about 5 months ago I was diagnosed with Ehlers-Danlos Syndrome (EDS) and just last week found out I have Multiple Sclerosis (MS). My mind has been overwhelmed with the news and hope that blogging will bring some clarity, allow some place to complain every now and again, and to have a place to track how things are going. Perhaps it will even help me connect with others dealing with similar challenges."

Shake & Spear by Chekoala

"I didn’t realise it but turns out an evil fairy godfather turned up uninvited to my baptism. Annoyed at being uninvited he muttered and cursed that I would grow up to be an MS princess. Luckily, my inner fairy gothmother has been around the block once or twice to come to the rescue."

Wednesday, December 3, 2008

Baby, It's Cold Outside... Inside Too!!

So last night, the boiler/radiator system in my house gave it up. It's been grumbling for awhile and I had thought, with some judicious bleeding of the pipes, that the monster could be appeased.

Well, I was incorrect and the pump which pushes the hot water through the miles of pipe in the house went KAAPUTTT!! So it's brrrrrrr in here, even after getting a fire going.

Baby, It's Cold Inside!!!

Tuesday, December 2, 2008

Clinical Trials for Multiple Sclerosis

Have you ever considered participating in a clinical trial? I have, yet... I haven’t. provides "patients, family members, health care professionals, and members of the public easy access to information on clinical trials for a wide range of diseases and conditions." The U.S. National Institutes of Health (NIH), through its National Library of Medicine (NLM), developed the site in collaboration with all NIH Institutes and the Food and Drug Administration (FDA).

Click here to search for Multiple Sclerosis clinical trials.

For the abridged description of the various types of clinical trials...

Read this post in its entirety:

Clinical Trials - Would you be an MS Guinea Pig?

And just yesterday, I received the following email regarding two ongoing Phase 3 trials comparing Campath (alemtuzumab) and Rebif (interferon beta-1a).

I do not qualify to participate due to having another autoimmune disease besides MS, previous (and current) use of Copaxone and Methotrexate. But you just might.

Hi Lisa,

My name is Brenna Fitzgerald and I’m writing to you from Fleishman-Hillard, a communications company, contracted to create awareness regarding two clinical research studies in multiple sclerosis. As your blog chronicles your journey with multiple sclerosis, I wanted to let you and your readers know about two global clinical research studies that are seeking adults with relapsing-remitting MS.

The Comparison of Alemtuzumab and Rebif® Efficacy in Multiple Sclerosis (CARE­MSSM) I and II studies are designed to determine the safety and effectiveness of the investigational drug alemtuzumab as compared to the FDA-approved therapy Rebif (interferon beta-1a), in adults with relapsing-remitting multiple sclerosis. The studies will look for differences between these drugs on the progression of disability and in the number of relapses (flare-ups) and brain lesions caused by MS. The studies also will compare the side effects of the drugs and monitor for risks during and after treatment.

Current therapies require frequent, long-term administration. When compared with no treatment, they have been shown to reduce the number of relapses, slow the formation of MS associated lesions in the brain, and impact progression of disability. A need still exists for more effective therapies to further slow the progression of disability.

Studies measuring investigational treatments against standards of care are advancing knowledge of these drugs on the disabling effects of MS, which may impact the patient's quality of life. Every patient in the CARE-MS studies will receive active treatment; there is no placebo. Participation in the CARE-MS trials may offer participants the opportunity to help advance research in the treatment of MS while taking a role in their healthcare.

Alemtuzumab, Rebif, the annual dose of steroids, and study-required procedures are provided at no cost.

To be eligible to participate in the studies, volunteers must be between the ages of 18 and 50 (CARE-MS I) or 18 and 55 (CARE-MS II) and meet specific criteria, including having a diagnosis of RRMS and first experiencing MS symptoms within the last 5 years (CARE-MS I) or 10 years (CARE-MS II).

For more information about the studies, please call 1-503-432-4725 or toll-free
1-888-404–MS-CARE (United States only) or visit There, you will find additional information about the studies and an online prescreener, which will allow people with RRMS to determine if they meet initial eligibility requirements.

If you find this information useful, I hope you will consider sharing it with your readers and posting 1-888-404–MS-CARE and a link to on your blog.

Lisa, thanks for your time and consideration. Please feel free to contact me at if you have any questions or would like to discuss the studies.

Best regards,

Brenna Fitzgerald

Genzyme Corporation is the sponsor of these studies. Bayer Schering Pharma contributed to the funding of the studies.

Genzyme® is a registered trademark of Genzyme Corporation. All rights reserved. CARE-MSSM is a servicemark of Genzyme Corporation, Ó2008. Rebif® is a registered trademark of EMD Serono, Inc.

Brenna Fitzgerald

Account Executive

Fleishman-Hillard, Inc

855 Boylston St | Boston, MA 02116


Monday, December 1, 2008

Needle Nostalgia - Copaxone and Me

Three years ago on this date, December 1, I began a new life.

I 'shot up' for the very first time...and not with a camera, but a needle.

A needle and a needle-gun, aka the Autoject2 for glass syringe.

My own special MS nurse, Nurse Carol, asked me, "so where do you wanna do it?"

"Ummmm, I guess the thigh first."

"Ok, drop trou." --- Ok, so she really didn't say that exactly, but you get the idea.

It was a Thursday so I chose my Thigh on the Right.

Get it? Thursday = TR = Thigh Right. I'm so clever (haha).

So this is how I decided where to inject and how to rotate.

Remember, kiddos, rotation of injection sites is VERY important for skin health.

Thursday = Thigh on the Right
Friday = Fanny on the Right
Saturday = Saddlebag on the Right
Sunday, Love = Saddlebag on the Left
Monday = Moon (fanny) on the Left
Tuesday = Thigh on the Left
Wednesday = Hump day = Middle Hump which is the Abdomen

Notice that I chose to never inject in my arms. That has been my personal choice and I've stuck to it. Arms are for creating music, not for pain and needles. LOL.

The MetaCarnival meets the Carnival of MS Bloggers

Kim of Emergiblog fame hosts the second edition of the "MetaCarnival" and invited the Carnival of MS Bloggers to join the fun. We are included among discussions of science, surgery, neuroscience, medicine, anthropology, and nursing.

Saturday, November 29, 2008

Seafood on Turkey Day, Waves on the Beach

Thankgiving Day has passed. You are invited to read about a few things for which I am thankful.

My little brother turned 36, so he's practically almost 40 now. lol.

I spent the week at Bethany Beach in Delaware, relaxing in a house owned by one of my piano families. Thank you Shannon.

What a luxury to be in a home large enough to sleep a dozen individuals comfortably and out-fitted with an elevator. Spacious, organized, quiet, and calm. Very good for the soul.

On Wednesday, my Sweetie and I walked down to the beach and looked for unusual shells, sanddollars, sea glass, smooth rocks, etc. We didn't find anything quite as unique as the horseshoe crab shell which was sitting on the beach house porch or the beautiful array of seaglass sitting in the family's bookcase.

We did find some interesting specimens and the most beautiful (when wet) black rocks. It was great fun watching the tide come in, with the increasingly large waves crashing before reaching the shoreline.

The day before, when we drove to Rehobeth Beach, we saw several surfers and boogieboarders catching some waves. Oooooh...cold!!!

Walking in the sand really put my legs to the test. I tried to stay on the harder, flatter sand but of course that was difficult to do. I got so very tired and the walk back to the beach house was excruciating. Each step was like hauling 100 lbs through quicksand.

When we reached the street, I found a bench to sit upon and wait for some feeling to return to my thighs, then my knees, and finally my calves (sorta). My Sweetie offered to go get the car, but I thought that walking on a flat surface for a few blocks might help relax the muscles. It did somewhat.

Waking up on Thursday, my calves were so incredibly spastic. If I hadn't experienced similar intense cramps before, I would have been crying from extreme pain and frustration. But being an experienced and knowledgeable MSer, I took it all in stride (while taking some extra Baclofen and trying gentle stretches).

The legs decided to cooperate enough to carry me, with my Sweetie, to enjoy a seafood Thanksgiving dinner in Ocean City. Even today those calves are still very sore and stiff, but it was well worth it to walk along the beach so close to the waves, enjoying the solitude and calm.

I think I'd choose to spend the week of Thanksgiving at the beach again in the future. That was very relaxing and I feel rejuvenated.

Thursday, November 27, 2008

Carnival of MS Bloggers #24 - Thanksgiving Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Hope, Thanksgiving, and Community

Once upon a time there was a little girl who had MS. She lived in Indiana with her Auntie Vi, Uncle Arthur, and Mother Rosie. She loved her life with her family, but dreamed of a place faraway, a place full of adventure and a cure for MS…some place over the rainbow.

One especially dark night, there was a tornado that blew the little girl up, up, and away. When she awoke, she was in a very strange land and she was afraid. She saw a sign: “Welcome to the Emerald City, Seattle!” Before she could think about that, a blue seagull flew over her and sat down in front of her.

“Hello, little girl,” spoke the blue seagull. A talking bird! How wonderful, the little girl thought. The blue seagull twisted his head all around until he was looking at her upside down, “What’s your name?” The shy little girl cleared her throat and said softly, “Diane?” The blue seagull’s head spun all around like a top before screeching to a halt, “Are you telling me or ASKING ME?”

Then muttering something through his beak, he flew away, leaving Diane all alone again. She grew frightened and wondered aloud, “What should I do? Where should I go? I have MS and I’m scared.”

“Follow the yellow sick road!” Diane jerked her head to the right, looking for who had said that. “Yes! Follow the yellow sick road!” shouted another voice, but where were the voices coming from? So many voices began screaming the same command: “Follow it! Follow it.”

Diane saw before her a path of yellow. With each step she encountered an odd sensation: vertigo, stars in her eyes, numb feet, weak hands, piercing migraines, depression, and a heaviness in her legs. As she walked further, she saw a corn field ahead and hoped there might be a cob to snack on. If only she could make it one…more…step… suddenly Diane felt a soft tap on her shoulder.

Standing behind Diane was a beautiful woman in a billowing dress holding a wand with a bright white star on the tip. “Dear, where are you headed?” spoke the gentle lady.

“I’m looking for a cure for MS,” said Diane with great authority. “WHO are YOU?”

“I am the good witch of the north. The person you seek is the Wizard of Plaus; he is very plausible.”

“How do I find him?”

“You must stay on the yellow sick road. But be very careful along the way,” said the good witch as she started to be blown upward, “the wicked witch of the west coast is never far away. Stay on course, my precious child. And good fortune to yooooooou,” her dress blew up like a sail and she floated into the clouds as silently as she had appeared.

“No! Don’t leave me all alone with MS!” cried Diane.

“Oh, my sweet, dearest, ugly, little slime. Your MS is my delight. T-Cells! Take flight! Attack her nerves! Eat her myelin.” Rubbing her mole infested rumpled hands together, the wicked witch of the west, gazed into her foggy magic ball as the winged T-Cells and viruses began flying out the cracked windows of her crumbling castle walls. With her 13 inch fingernails she grabbed a passing T-Cell. “And don’t forget her spinal cord and brain.”

“BREAK THE BLOOD BRAIN BARRIER!” they screeched as they flew.

Diane fell near the corn field. Looking up at the pastel sky, two large eyeballs stared back at her! “AHH!” she screamed to an echoed “AHHH!” from the scarecrow attached to the eyeballs. “Who are YOU?” asked the scarecrow. “I’m Diane. I need to talk to the Wizard of Plaus. I need a cure for MS.”

The scarecrow helped her up. “Mrs? Miss?” “No, no, MS—Multiple Sclerosis. It is a disease of the central nervous system.” The scarecrow frowned; his stitched rag mouth turned upside down, “Oh, the brain. If I only had a brain. I’m going with you and ask the Wiz of Plaus for a brain.”

Off the two went, both falling and getting back up as they moved, neither expecting what jumped out in front of them---a lion! He roared so loudly that the straw blew out of the scarecrow and all that remained was his hat and two button-eyeballs. “Look what you did!” shouted Diane.

The cowardly lion hit his head with his giant paw. “Aw shucks. I’m so sorry. What was I thinking? You both came upon me out of nowhere and scared the fur balls out of me. What are you doing way out here?”

The scarecrow’s stitched rag mouth started speaking. “We are going to see the Wizard of Plaus. She wants a cure for MS and I want a brain. Now help put me back together. With that said, he directed the lion and Diane exactly how to build him back together. “I am, am, am, I mean if you don’t mind, I um, would like to, uh, go along and, well…well…”

In unison Diane and the scarecrow impatiently barked, “Well, WHAT?!”

With his tail between his legs, the lion said meekly, “Ask for some courage?”

After continuing along their way, the troop of three soon saw an enormous structure rising high into the sky, up into space like a needle. The Emerald city’s Wizard of Plaus was only a skip, or twenty, away. SQUEEEEEEEEEL

What was that, they wondered. KEEERRR-PLUNK. In their path a tin can fell. “Help me. Please help me.” Diane thought--- what next? A talking scarecrow, a cowardly lion, and now a talking tin can? A glance to the right showed that in fact this was the head of a tin MAN! The scarecrow took off running, returned with an oil can and began to oil and reconnect the tin man’s head.

“Oh, that feels chicken-biskets good! Thank you. Who are you wonderful creatures?” asked the well-oiled tin man. After introductions were made the troop became four. The tin man wanted a heart. But before they began to skip, the flying T-Cells and viruses had arrived. They swarmed Diane, causing her body to stiffen like iron.

“Lion, swat them!” commanded the scarecrow, “Tin man, put your cool metal on her. I’ll give her my stick arm to walk with.” The tin man wrapped his cool arms around Diane and the lion bit and swatted the T-Cells until they gave up and flew away.

The wicked witch of the west coast was furious at her immune system “mission unaccomplished” and she took a step outside to shoot her returning warriors with Solu-medrol; but the Emerald city rain dealt her a deadly blow. “I’m melting.” The Seattle rain melted her away forever. Her anger blinded her to the effect fresh rain had on her.

“We are here,” said the troop as they eyed the huge tower. A guard with a bad haircut blocked the entrance. “Don’t worry,” said the tin man, “he is the bill and gates keeper; just throw apples at him and he runs away.”

“WHO GOES THERE?” bellowed a booming voice from the top of the space jousting needle. The lion began to shiver and the scarecrow turned to leave, stopped only by the tin man. Diane spoke, “I want a cure for MS. Scarecrow wants a brain, Lion wants courage and Tin Man wants a heart.” “GO AWAY” Go away? That’s it? “Look, an elevator, let’s go to the top,” said the scarecrow. Up they went until the doors opened and there, standing with a microphone was: Madonna.

Diane couldn’t believe her eyes. “YOU are the great Wizard of Plaus?! You are just Madonna!”

“Excuse me? JUST? I am a music legend, a cultural icon. Yeah, I’m a frigging wizard too AND I write children’s books. I’ve been watching you. You are all jerks. Lion. You want courage? YOU’RE A FRIGGIN’ LION, King of the Jungle. You gave an arse whuppin’ to those T-Cells. Tin man, woe is me; you want a heart, WHAT ARE YOU A VIRGIN? You hugged Diane when she was down. You cared about her. That takes heart, you dope.

And YOU, scarecrow, you want a brain? WELL JOIN THE CLUB! You figured out how to save Diane and fix tinny and put your own SELF back together WITHOUT YOGA OR BOTOX. You bowlbeepers already HAVE what you want.

The lion let out a roar that shook Mt. Rainier; the tin man felt his heart beat; the scarecrow straightened his hat and stood tall…Diane walked slowly up to Madonna. “What about me? Where is my cure?”

Madonna took off her cone bra and put her hands on her hips. “Listen Kid, right now there is only one cure for MS that’s plausible, and the good witch gave it to you the moment you landed in Plaus; and that is hope, a belief that if you just follow your dream anything is plausible. Anything is possible."

Anything is possible. Anything is possible. “Diane? Diane?” “Auntie Vi?”
“Time to wake up. Here, let me help you with your hair. There’s a piece of straw in there…”

A few discussions floating around the MS Community blogosphere:

Lanette returns from her wedding in Jamaica. Yeah Mon, photos included.

Shauna visited Jack's Lake and saw deer tracks and an old bridge.

Lisa discussed Spasticity, Disabilty, and Solumedrol at Multiple Sclerosis Central.


Nadja, the Denver Refashionista, is Cured!! No, not that kinda cured. Go read.

Anne thanks everybody for More Success!! in raising funds for Herrad's cushion. I thank you too and Herrad received the funds yesterday. Whooohoooo!!

Richie, Herrad's Sweetie, shares what a typical day entails for a caregiver. Thank you Richie for all that you do.

And Serina shares a favorite Christmas Story about Big Wheel in Indiana.

This concludes the 24th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 11, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, December 8, 2008.

Thank you.
Comments for this post.

Wednesday, November 26, 2008

Flu Shots, Easier Injections, and Free MS Publications

Some articles I wrote over at The Health Central Network which you may enjoy reading. Excerpts below...

How NOT to Win Friends and InFLUence People
Have you had your flu shot this year? I have.

Vaccination is the best way to combat the spread of influenza “the flu” each year. The majority of adults have antibody protection within 2 weeks after vaccination and with “the flu” not appearing in certain communities until February or March, it is not too late to get your shot for full protection.

National Influenza Vaccination Week is December 8-14, 2008
Subcutaneous Injections: 7 Tips for Reduced Pain and Skin Irritation
For subcutaneous (under the skin) self-injections, these tips should help eliminate some pain and lessen site reactions.
Multiple Sclerosis Publications available for Free
Momentum, MS in Focus, The Motivator, MS Focus, and Neurology Now

More writings can be found at

Monday, November 24, 2008

The Epstein-Barr Virus and the MS Immune System

On Friday, my producer at The Health Central Network asked me to write something in response to news articles coming out of Australia regarding the Epstein-Barr virus, it's connection to MS, and the development of a vaccine.

So over the weekend I've been - reading, studying, reading some more, writing a little, going back to read again to make sure I understand, writing.........

Below is a brief excerpt of the post which went live this morning. For the full version, click the title below, read, and follow the links to the correlating studies, abstracts, and news reports. This is actually some very interesting research.

"The Kissing Disease" and Multiple Sclerosis: Is there hope for a vaccine?

As reported in The Sydney Morning Herald, Vaccine Hope in MS Link to Virus, the connection between the Epstein-Barr virus and the onset of MS, when combined with the development of an effective vaccine against EBV, may give hope to future generations of persons having a higher risk of developing multiple sclerosis.

Lead researcher at University of Queensland, Michael Pender, has said that once the glandular fever vaccine is fully tested, it could be included in Australia's childhood vaccine program for people who had a diagnosed relative (a higher risk factor).

However, Robert Booy, a professor in pediatrics with the National Centre for Immunization Research at the Children's Hospital at Westmead, said that until scientists could establish the exact cause of MS, it was impossible to ensure a vaccine did not contain proteins which could trigger multiple sclerosis.

Sunday, November 23, 2008

Our Health Care System - 5 Myths

An interesting Health Policy Op-Ed in today's Washington Post.
What is your opinion on the myths and possible solutions?

5 Myths About Our Ailing Health-Care System

By Shannon Brownlee and Ezekiel Emanuel
Sunday, November 23, 2008; B03

With Congress ready to spend $700 billion to prop up the U.S. economy, enacting health-care reform may seem about as likely as the Dow hitting 10,000 again before the end of the year. But it may be more doable than you think, provided we dispel a few myths about how health care works and how much reform Americans are willing to stomach.

1. America has the best health care in the world.

Let's bury this one once and for all. The United States is No. 1 in only one sense: the amount we shell out for health care. We have the most expensive system in the world per capita, but we lag behind many developed countries on virtually every health statistic you can name. Life expectancy at birth? We rank near the bottom of countries in the Organization for Economic Cooperation and Development, just ahead of Cuba and way behind Japan, France, Italy, Sweden and Canada, countries whose governments (gasp!) pay for the lion's share of health care. Infant mortality in the United States is 6.8 per 1,000 births, more than twice as high as in Japan, Norway and Sweden and worse than in Poland and Hungary. We're doing a better job than most on reducing smoking rates, but our obesity epidemic is out of control, our death rate from prostate cancer is only slightly lower than the United Kingdom's, and in at least one study, American heart attack patients did no better than Swedish patients, even though the Americans got twice as many high-tech treatments.

Moreover, the quality of health care is different in different parts of the country. The Centers for Medicare and Medicaid Services have issued a list of 26 measures of quality, such as making sure that heart-attack patients being discharged from the hospital get a prescription for a beta blocker or aspirin to help reduce the risk of a second attack. It turns out that quality is all over the map, and it isn't necessarily better in the places we might expect, such as academic medical centers. Worse still, according to the Congressional Budget Office (CBO), there appears to be no connection between how much Medicare and other payers spend on patients in different parts of the country and the quality of the care the patients receive. You are no more likely to get that beta blocker or aspirin in Los Angeles than in Portland, even though Medicare spends twice as much per beneficiary in Los Angeles.

2. Somebody else is paying for your health insurance.

Nope. Even when your employer offers coverage, he isn't reaching into his own pocket to cover you and your fellow employees; he's reaching into your pocket, paying you lower wages than he would if he didn't have to pay for your health insurance.

Rising health-care costs are partly to blame for stagnant wages. Over the past five years, health insurance premiums have risen 5.5 times faster on average than inflation, 2.3 times faster than business income and four times faster than workers' earnings. Four times. That's why wages have been nearly flat since the 1980s, even as U.S. productivity has been going up. In effect, about half the money you should be earning for being more productive is being sucked up by ever more expensive health-insurance premiums.

If you pay taxes, you're also paying for the health care provided through state and federal programs such as Medicare, Medicaid, the Veterans Administration and the military. All told, the average family of four is coughing up $29,000 a year for health care through taxes, lower wages and out-of-pocket medical expenses.

3. We would save a lot if we could cut the administrative waste of private insurance.

The idea that we could wring billions of dollars in savings this way is seductive, but it wouldn't really accomplish that much. For one thing, some administrative costs are not only necessary but beneficial. Following heart-attack or cancer patients to see which interventions work best is an administrative cost, but it's also invaluable if you want to improve care. Tracking the rate of heart attacks from drugs such as Avandia is key to ensuring safe pharmaceuticals.

Let's just say that we could wave a magic wand and cut private insurers' overhead by half, to what the Canadian government spends on administering its health-care system -- 15 percent. How much would we save? Not as much as you may think. Private insurers pay a little more than a third of what we spend on health care, which means that we'd cut a little more than 5 percent from our total budget, or about $124 billion. That's not peanuts, but it's not even enough to cover everybody who's currently uninsured.

More to the point, we only get to save it once. That's because administrative waste isn't what's driving health-care costs up faster than inflation. Most of the relentless rise can be attributed to the expansion of hospitals and other health-care sectors and the rapid adoption of expensive new technologies -- new drugs, devices, tests and procedures. Unfortunately, only a fraction of all that new stuff offers dramatically better outcomes. If we're worried about costs, we have to ask whether a $55,000 drug that prolongs the lives of lung cancer patients for an average of a few weeks is really worth it. Unless we find a cure for our addiction to the new but not necessarily improved, our national medical bill will continue to skyrocket, regardless of how efficient insurance companies become.

4. Health-care reform is going to cost a bundle.

Only if you think that covering the uninsured is our only priority. Yes, making health care available to all citizens is the right thing to do. But it isn't the only thing to do. We also have to fix the spectacularly wasteful and expensive way doctors and hospitals deliver care.

Our physicians are working within a truly dysfunctional, often chaotic system that prevents them from caring for us properly. Between 50,000 and 100,000 patients die each year from preventable medical errors. According to the Centers for Disease Control, 1.7 million Americans acquire an infection while in the hospital and nearly 100,000 of them die from it. Laboratory imaging tests are routinely repeated because the originals can't be found. Patients with such chronic illnesses as heart failure and diabetes land in the hospital because their physicians fail to monitor their condition. When patients have multiple doctors, there's often nobody keeping track of the different medications, tests and treatments each one prescribes.

Our doctors and hospitals are failing to provide us with care we need while delivering a staggering amount that we don't need. Current estimates suggest that as much as 20 to 30 percent of what we spend, or about $500 billion, goes toward useless, potentially harmful care.

There are two bright spots. One: We can improve the quality of care and cut costs without rationing. There are models out there for how to do it right -- the Mayo Clinic, the Geisinger Clinic in Pennsylvania, the Cleveland Clinic and California's Kaiser Permanente are just a few of the organized group practices that are doing a better job for less. Their doctors are better than average at using the best medical evidence available. They're more likely to be using electronic medical records, which can help keep track of patients who have multiple physicians and need complex care. And they're less likely to provide unnecessary care.

Two: Even moderate reform of the delivery system would improve care and save money. The Lewin Group's analysis shows that a bill proposed by Sen. Ron Wyden, an Oregon Democrat, calling for a more comprehensive overhaul of the health-care system than either McCain's plan or Obama's could actually insure everyone and save $1.4 trillion over 10 years. More reform is cheaper.

5. Americans aren't ready for a major overhaul of the health-care system.

We may be readier than you think. A recent study published in the New England Journal of Medicine found that only 7 percent of Americans rate our health-care system excellent. Nearly 40 percent consider it poor. A whopping 70 percent believe it needs major changes, if not a complete overhaul.

Now is not the time to think small, to cover a few million Americans and leave the bigger job of controlling costs and improving quality for another day. We can't afford not to reform the delivery system as soon as possible. At 17 percent of gross domestic product, health care is the biggest single sector of the economy, and it's consuming a larger and larger proportion every year. According to CBO projections, health care will account for 25 percent of GDP by 2025 and 49 percent by 2082. That's simply unsustainable. Any plan that reforms health care has to do more than simply cover the uninsured. The nation's health and wealth depend on it.

Shannon Brownlee, a visiting scholar at the National Institutes of Health Clinical Center, is the author of "Overtreated." Ezekiel Emanuel, an oncologist and author of "Healthcare, Guaranteed," is chairman of the center's Department of Bioethics. The views expressed here are the authors' own.

Saturday, November 22, 2008

Friday, November 21, 2008

Spasticity, Disability, and Solumedrol

Some articles I wrote over at The Health Central Network which you may enjoy reading. Excerpts below...

Solumedrol: It's All The Rage!!
If you have multiple sclerosis, it just might be possible that you’ve also experienced the dreaded IVSM. IVSM = Intravenous Solumedrol, a treatment which involves really high doses of glucocorticoid steroids, specifically Methylprednisolone.

Solumedrol, a potent anti-inflammatory steroid, is used as an emergency treatment for acute exacerbations. It does not affect the course of the disease, but it does shorten the length of a relapse by putting a stop to ongoing inflammation and closing the blood-brain barrier.

If your relapses have not been too severe, maybe you’ve not had the ‘pleasure’ of IVSM so far in your MS career. I applaud you in that. But if you do have to undergo the infusion, hopefully these tips will help make your experience more tolerable.
Frankenstein, Ginger, and Me
Halloween is past, over, done for this year... and I have Multiple Sclerosis, but that doesn’t make me a MonSter, does it?

Not really, but lately, I am Frankenstein!!! The 1931 Boris Karloff version.

Why am I walking with the stiff lurch of the classic film creature you ask? Spasticity.
Disability: What's your Kurtzke Expanded Disability Status Scale (EDSS) Score?
Although the EDSS lacks sensitivity to short-term changes in a patient’s status, it is used extensively in national and international trials to evaluate the effectiveness of therapy. It is heavily weighted toward ambulation assessment and fails to assess cognition, upper extremity function, and fatigue.

Fundamental to the EDSS is the Functional Systems (FS) Scale which evaluates seven areas of the central nervous system which control bodily functions (0 = normal function and 6 = unable to complete task). The FS scores are especially important in the less severe forms of disability where a patient may have same abnormal disability but is otherwise still ambulatory.

Thanks for going over to to read and comment upon my humble musings. I appreciate it greatly.

Wednesday, November 19, 2008

Ensure your Insurance? Crazy MS!!

Peep. Peep. Peep.

Well, as Diane mentioned in Multiple Sclerosis Worth Reading, I was mentioned in the latest Momentum Magazine from the National MS Society (Winter 08/09). The article is about planning for your future and my contribution deals with health insurance. I'm including my portion of the article below -

What's Ahead for You? Planning to Plan by Heather Boerner (pp. 24-30)

Excerpt from pages 26-27:

Planning to put money where your future is: insurance and savings

For Lisa Emrich, $325 a month is a small price to pay for ensuring her insurance.

That's how much she spends now on her individual health insurance. As a self-employed musician and music teacher, she was shopping for a policy that would pay for her MS needs. [MS drugs, specifically] Insurance brokers advised her to hold onto her current insurance for dear life. So even though she could have been added to her boyfriend's insurance policy when the couple moved in together, she said she's unlikely to let her own insurance go. You know, just in case.

"It's sort of an insurance policy for an insurance policy," said Emrich, 40, who lives in Washington, D.C. "If anything did happen--if he changed jobs--paying an extra $325 a month might be a good investment."

Since her diagnosis in 2005, Emrich has made several other good investments: She opened a Self-Employed Pension account and an Individual Retirement Account.

She's lucky. She's always been a good saver. But even if you don't have that advantage, you should still think about how you can protect yourself financially. Some people with MS work without much interruption in their earning power for decades. For others, sudden symptom progression leaves them without work--and without health insurance. For everyone, financial planning is one of the most important tools to protect against the unpredictable.

[Personal note: This insurance policy was obtained in 2000, years before receiving the official MS diagnosis. The policy was underwritten which explains why it doesn't cost over $500 as do other individual policies in the state do, if you have MS. See Mandy for an example.

In this article, "MS needs" really means "MS drugs." I like my insurance policy except that pesky detail which limits my coverage to $1500 each year for pharmaceuticals. Oh, and maybe the part where standard MRIs cost me a $500 co-insurance. But other than that, I'm good. I guess.

Oh, except that other part......]

Eventually, this edition of Momentum Magazine will be included here.