Saturday, October 30, 2010


Do you ever have a time where you just need to be still?  To let the crazy bustling of the world glide on by?

There are times where I've felt like this and often it is accompanied by an overwhelming urge to curl up into a crumpled ball in the bed and retreat from the world.  After years of watching this pattern within myself, I can recognize it as a sign of increasing depression.

But today, I don't want to hide away from the world.  I want to let the world engulf me and caress me.  Allow good things to happen and smile about it.  To breathe deeply and enjoy the shining sun.

Life is good.  Stillness is a blessing.

Wednesday, October 27, 2010

$0 Copays, Or Maybe Not

I haven't talked seriously about health policy in a long time.  It used to be the focus of my blog, way back in the beginning.  But I've had a new reminder of how much it isn't right that the benefits provided under Group insurance are allowed to be greater than the ones provided under Individual coverage even from the same company.

In September I received a letter from my insurance company:
Dear Member,

[Name of insurance company] is committed to providing you with timely information about changes to your prescription plan.  You are receiving this letter because our prescription claims data shows that you recently filled a prescription for one of the oral chemotherapy drugs listed below.

Effective October 1, 2010, your copay for these specific oral chemotherapy drugs is $0.  The $0 copay is not retroactive, therefore, the copay for prescriptions you may have filled for these drugs prior to October 1, 2010 is not affected.
I went to the local pharmacy today to fill my prescription of Methotrexate (which is on the list).  When checking out, the pharmacist told me the amount I owed and I was taken by surprise.  I expected the promised $0 copay.  As they completed the transaction with my insurance company, no such arrangement was found.

I stood right there and called the pharmacy benefits number on my insurance card to ask about this mix-up.  The representative quickly told me that they are aware of the issue and that my insurance is working to find a resolution and rectify the situation.


Apparently some of these letters were sent out in error to policy members.  I was not part of the group who was supposed to receive them.  I asked what what the demographics of the group who they were intended for.  The rep didn't know.  She suggested that I call my insurance company directly.

When I got home, I did just that.  I called my insurance company.  After circling through the maze of options, I finally found the one which was for the "I want to talk to a real person" choice.

I explained my situation and she looked it up on her end.  She came back and asked if the letter referred to chemotherapy drugs.  Yes, it did.  She put me on hold again.

When she came back on the phone, she explained that unfortunately some members had received that letter in error.  She apologized.  "Your pharmacy benefit has not changed."

This time I asked again.  "Who was supposed to get the letter?"

She informed me that it was intended for certain members who have Group Policies through their employers.  Oh, ok.

Yet another reminder that the difference between group and individual insurance kinda sucks.  It shouldn't be allowed.  You know, some folks are not aware that much of the legislation which we get so excited about, such as the Mental Health Parity Act, are only applicable to group insurance policies.

That shouldn't be.

I thanked the insurance representative for letting me know the reason why I was not among those who will now be paying nothing out-of-pocket for their oral chemotherapy drugs.

Sure, my methotrexate copay is either $10/mo or $20/quarterly.  It's not exorbitant, but saving $80-120/year would be a nice thing.

I know that mistakes happen.  I received a letter in error.  But I often wish I had the type of great coverage which is mandated for group policies sometimes.  Being self-employed and now "uninsurable" do have their disadvantages.

Interview with Mitch: PPMS and Enjoying the Ride

As a follower of several MS-related blogs, I get to know people through their stories and words online.  Doing so helps me to understand my own disease and to gain understanding of the different disease experiences of others.  It is truly cathartic.

This has also been great in learning about progressive forms of MS.  Talking to people who live it is more educational at times than reading the general information available online.  With that said, I’d like you to meet Mitch, a person living with primary progressive MS, who blogs at Enjoying the Ride.

Mitch, welcome to MS HealthCentral.  Please tell us a little bit about your MS diagnosis.  Had you had symptoms for years before seeing the doctor?  We are told that men generally delay seeking medical treatment.  What were your early symptoms?

Thank you so much for giving me the opportunity to talk about PPMS. I hope some people can benefit from my experience.

In the late winter of 2000, as I was jogging on my treadmill, I noticed a barely perceptible difference between my right foot and my left foot. My right foot quietly hit on the heel, and rolled to the toe as it is supposed to do while jogging. However, my left foot didn’t quietly go from heel to toe. It made a flapping sound. If I really concentrated I could make my left foot quietly go from heel to toe, heel to toe, but it didn't want to.

Read this post in its entirety:

Enjoying the Ride: Mitch talk about life, activism, advice, and living with Primary Progressive MS

Monday, October 25, 2010

Autumn and Arthritis: RA Through the Years

Hey folks, it’s finally autumn around here!!  The leaves are changing, pumpkins and mums can be seen everywhere, and we’re just days away from Halloween.  I can hardly imagine what has happened to summer and early fall.  Time has simply flown by so very quickly.

Have you ever noticed that when things are going well, time flies?  This seems to be true right now.  And looking ahead at the calendar, it feels as though it should be January already.  My life is so very scheduled right now, it’s not funny.  But the fact that I’m able to be so involved and active is a very good thing.

One year ago, I was not able to schedule much of anything.  I was sick, sick, sick with bronchitis which wouldn’t give up.  I was still greatly depressed and feeling the effects of a humongous MS relapse during the summer, accompanied by a cumulative total of 8500mg of steroids.  And, I was 50 pounds heavier then I am right now.

2009 was not going so well until I took charge of at least one aspect of my health and approached my rheumatologist about trying a different RA medication (Rituxan).  I had done my research and knew that it is effective in RA and has also been studied as a potential treatment for multiple sclerosis.  My neurologist was excited about this possibility.

Read this post in its entirety:

Looking Back at RA and the Changing Seasons of Life: Diagnosis, Treatment, and Community

Sunday, October 24, 2010

The Mouse in the House

Looks like we have some extra creatures living somewhere in or around the house. In September, Rob was vacuuming the stairs and discovered a deceased visitor.  A little brown mouse was on the landing. 

We wondered just how long the mouse had been there, especially since folks had passed by several times already that day.  That little brown mouse was ultimately carried away.

Today as I walked through the dining room towards the kitchen (not being the first person to do so this morning) I spotted another deceased visitor.  Another dead mouse on the carpet right out in the open.

So where there's one mouse, there might be another.  Where there's two mice, then there certainly are going to be more.  So far, I haven't seen any other "evidence" of mice, but that doesn't mean that I won't.

I'm wondering which of our three cats might be the "mouser" of the bunch.  Nobody seemed all that interested in the dead mice that I could tell.  And the mice didn't look mangled at all.  They just looked like they had shriveled fright, maybe? 

However, I know that I'd be afraid of living in the same house as three cats if I were a mouse.

Saturday, October 23, 2010

WEGO Health is looking for Health Activists for Upcoming MS Panel

WEGO Health is an online community which aims to empower health activists to help others.  The community managers are great about promoting really good material they find on the web, including from our blogs and websites. 

One of the community managers informed me of an upcoming MS Health Activist Panel.  Basically, they are looking to get a small group of MS Activists (patients or caregivers who are active online) together to learn more about the community – topics, trends, common questions, etc.

They're doing this on behalf of a sponsor (ie. a pharma company who makes an MS therapy), so questions may be asked about current treatments and how the community feels about what’s out there right now.  At this time, it looks like the panel is scheduled to continue through early 2011. 

Below is the invite/announcement:
Join WEGO Health in their continued effort to empower MS Health Activists!
What will participation on WEGO Health's Panel of MS Health Activists involve?

They'll ask you to join them for three Panel Meetings - these meetings will last about an hour each and take place both online and on the phone. Panelists will also be invited to continue the conversation and share their opinions and experiences within the MS community online by participating in a private Group on WEGO Health.

Panelists will receive a $25 gift certificate after each meeting that they attend. Additionally, WEGO Health will make a $200 donation to the MS non-profit of the panelist's choice for each panelist who attends a majority of Panel Meetings.

If you're interested in participating, please take this survey to see if it might be a good fit for you:

Multiple Sclerosis Community Insight Survey
Just to let you know - Although I'm not extremely involved in the WEGO Health community, I do pop in occasionally to see what is going on.  Also, I was invited by the Vice President to participate on a panel of patient advocates in mid-November at a conference.  They are paying me for related travel expenses.

I signed up to participate in this MS panel.  This may be an opportunity to be heard regarding real patient needs and desires.  Or at least it's a good chance to learn what the sponsors want to know about us.  ;-)

The first Panel Meeting is scheduled to take place on Tuesday, November 16, 2010.

Thursday, October 21, 2010

Carnival of MS Bloggers #74

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

Memory, Language, and Humor
by Mary of Travelogue for the Universe

Proteins and Memory,
are they one & the same?
If so true, it makes proteins
so important in our game.
The shots of proteins like the bee sting
can slow the MonSter that I know.
Is my brain full of complex
Protein strands imprinted with
Memories of long ago?
And will the funding last forever,
Will the protein soup be ever?
Will they some day, find a new way
to deliver protein feed.
To chew or swallow, cook or wallow in exactly
what I need?
For now I take the proteins,
shots really not that bad.
The only way I can, The only way is how
to keep the MonSter
far out on the curb.

by Jenn of Losing It

The day we finally went to the ER was the day I couldn’t put on my underwear and then face-planted in my kitchen, my body contorted on the floor like some sort of crime-scene chalk outline. I thought about how I might be paralyzed and wondered which of my darling pets would start gnawing me first. Et tu, Ella? (Just to clarify: I wasn’t naked in my kitchen. Separate incidents. Not that there’s anything wrong with that.)

So we head to Baptist NLR, the closest hospital to our house, and begin the obligatory ER wait. I see the nurse, another nurse, a doctor, and then a neurologist. He is a young guy, but he put me immediately at ease. He was competent, thoughtful, thorough, and Indian. I only point this out because, as it will become clear soon, there was a slight language barrier.

He did all of the standard neurological tests (I know this because I had epilepsy when I was younger). And then he had me walk up and down the hallway of the ER. I say walk, but it was more of a shuffle-lurch I was rocking at that point. I think he knew within the first five minutes what was wrong with me, but, like I said, he’s thorough.

And then we went back to the small ER room. He told us I would be staying at the hospital, which came as quite a shock because I expected to be in and out and on my merry little way. (Why I thought this, I still don’t know. Optimism? Denial?) I just nodded, trying to be the perfect patient, even though my throat was closing up as the anxiety crept in. His words were competing with my inner dialogue, and losing.

I needed to stay for days of observation and treatment, he told us. And I would get on steel rods for those five days, he said. He left the room to get my admittance paperwork started.

“Steel rods?” I blurted incredulously to Nick, my carefully constructed composure now crumbling. “Why on earth would I get temporary steel rods put in me? What good will that do? I don’t want surgery. Let’s leave. I’ll just keep the gown on.”

I was in hysterics.

Try as he may, Nick couldn’t stifle his laughter, which nearly provoked me to start throwing hospital equipment at him (Latex gloves, by the way, aren’t exactly as threatening as they may at first seem).

“Steroids, Jenn. He’s going to put you on a five-day treatment of steroids.”


I began giggling uncontrollably. Nick joined in, our chuckling filling that small room with the bad fluorescent lights and echoing down the hallway.

And in that moment we knew: Whatever came our way, we’d be OK.

Potty Humor in New Jersey
by Lisa of Brass and Ivory

Folks with MS are not the only ones who find value in appropriately-placed facilities.

"Reserved Seating"

"I Have To Pee"
After admiring the handiwork of these signs (and laughing), I just had to document the spottings.  Have you spotted clever signs on your journeys?  If so, please share them in the comments section.

This concludes the 74th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 4, 2010. 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 Tuesday, November 2, 2010.

Thank you.

Comments for this post.

Wednesday, October 20, 2010

Hallowgreen Contest - Fight Air Pollution

One of my horn students and a classmate have entered the Arlingtonians for a Clean Environment Hallowgreen contest.  Their 3-D project (seen below) depicts problems with air pollution and is labeled "Gunston MS Air Pollution."

With an online component to the contest, it'd be great if you checked out the submissions and voted for your favorite project (which is "Gunston MS Air Pollution," right?)  The projects will also be judged next week at the Hallowgreen benefit, sponsored by the organization.  Only one vote is allowed per computer or mobile device.

Please vote and feel free to pass this on to your friends.

Hallowgreen logo
As part of the Arlingtonians for a Clean Environment Hallowgreen celebration, we are holding an Eco-Horror Contest, and YOU get to pick the winner. Each of the participating teams is creating a spooky display on an environmental topic facing our community. Vote between now and Friday, October 22 for your favorite. The winner of this online contest will receive $50, to be presented at Hallowgreen on October 27.
Gunston MS - Air Pollution - This model portrays Smogville and Greenville. Smogville models a town with terrible air pollution and the effects it has on the city and people's health. Greenville is a model of what all US towns desire: pure, clean, air!
Gunston display - air pollution

Tuesday, October 19, 2010

Is Pharma Paying Your Doctor?

[Note: Majority of the information below was pasted from an email announcement and one other source online.  I just fixed some of the links.]

An historic piece of journalism was published today. Six news organizations partnered on the "Dollars for Docs" project - ProPublica, NPR, PBS's Nightly Business Report, the Chicago Tribune, Boston Globe and Consumer Reports. They examined $258 million in payments by seven drug companies in 2009 and 2010 to about 17,700 health care practitioners nationwide for speaking, consulting and other tasks.  The project offers details on the seven pharma companies, the top earners and a chart of the number of doctors in each state, their professional backgrounds and what they did on behalf of the drug companies.

In a major investigation of pharmaceutical company payments to doctors, ProPublica and our partners found that hundreds of the doctors who are being paid to promote drugs have been accused of professional misconduct, were disciplined by state boards or lacked credentials as specialists.  A sidebar piece examines lawsuits brought by former pharma employees who alleged their companies illegally marketed brand-name drugs.

Today, NPR will feature interviews with Charles Ornstein on Morning Edition and Tracy Weber on All Things Considered and next week NPR's Alix Spiegel will have an in-depth piece.  The Boston Globe and Chicago Tribune published their own related stories, while the Nightly Business Report will run features on their program on Tuesday and Wednesday.  And Consumer Reports published a survey of patient attitudes toward pharma payments to doctors.

Ornstein and Weber won a Pulitzer Prize for their King/Drew medical series in the Los Angeles Times in 2005 and they were finalists for the award this year for their coverage of health care issues for ProPublica.  Both are available to do interviews to discuss this new investigation.  The reporters will also host a conference call this Thursday, October 21st at 3pm Eastern to explain how other reporters can follow up on their work and do their own local investigations (details to follow soon).  We hope you will join us by writing, blogging, tweeting or republishing it for your audience.  Please feel free to contact us with any questions at all.

Best regards,
Mike Webb & Quadia Muhammad

Monday, October 18, 2010

Ocrelizumab in Multiple Sclerosis

Many news stories are flooding my Google Alerts due to ECTRIMS which occurred last week.  Many abstracts to read and discuss, so little time.

One treatment which I'm keeping my eyes on is ocrelizumab (which is basically the humanized version of rituximab).  Studies of ocrelizumab in rheumatoid arthritis were halted last March due to deaths in the Phase III trials.  Studies of ocrelizumab in lupus have also been halted.

I'm personally interested in following the success of ocrelizumab just so that MS patients might be able to try it on-label, as opposed to attempting to use rituximab off-label.  But if it proves to be unsafe, then we should all stop to weigh the benefits/risks (as we should with all treatment choices).

I'm including one brief article below regarding this new information.  Please do follow the links at the end of this article for more information.  The one statement which gives me a little twinge in the stomach refers to the MS market quickly growing to $13 billion.  Just a couple weeks ago, it was estimated at $7 billion.

While I do not believe in conspiracies to keep us "sick", I must concede that we represent a lucrative market.  Too many dollar signs floating around.  Sigh. 
Patient death mars promising MS results in PhII ocrelizumab trial
By John Carroll
Just five months after risk factors forced Roche and Biogen Idec to scuttle a program to develop ocrelizumab for rheumatoid arthritis, researchers are touting new mid-stage data showing that MS patients on the drug experienced a reduction in relapses and brain lesions. But they also noted that one person died in the trials and that patients in the drug arm of the trial experienced a higher rate of some side effects than the patients in the placebo arm.
The patient died from systemic inflammatory response syndrome, which is sometimes caused by infection. But the researchers said they could find no evidence of opportunistic infections in the study. Infusion site reactions among patients taking two different doses of the therapy were significantly higher than the placebo group, though researchers reported that the reactions were largely mild to moderate and tapered off during the second infusion.

MS is one of the hottest fields in drug development. Pharma companies are zeroing in on a market with high unmet medical needs, with analysts forecast MS drug sales are quickly headed to $13 billion.  Roche and its partner say they are ready to

"We are strongly encouraged by these data and the possibility that ocrelizumab could become a new option for patients with MS," said Dr. Hal Barron, Roche's chief medical officer. "We believe in the potential of ocrelizumab and look forward to exploring it further in the final phase of clinical development."

Patient deaths during the Phase III RA trial doomed the program. The two companies shut it down, just as they did for lupus. Ocrelizumab had been one of the brightest starts in Roche's pipeline, but its potential blockbuster status has dimmed considerably in recent months.

- check out the Roche release for more
- read the Reuters story

Related Articles:Roche, Biogen shutter blockbuster ocrelizumab arthritis program
Infections and deaths force Biogen, Roche to suspend blockbuster program

Wednesday, October 13, 2010

Patients Speak at BlogWorldExpo2010

It's finally here!  BlogWorld Expo’s Social Health track is happening on Thursday, October 14, 2010.
KevinMD at BlogWorld Expo 2010 Social Health track

I’m joining some great patient bloggers and activists on a panel discussing Patient Blogging and Disease Awareness: Sickness and Health on the Web.

Thursday October 14, 11:00 AM - 12:00 PM
Room: Tradewinds A & B / 10
Trisha TorreyJenni Prokopy Amy Tenderich Lisa Emrich
Trisha Torrey (Moderator)
Jenni Prokopy
Amy Tenderich
Diabetes Mine
Lisa Emrich
Brass and Ivory

Patient bloggers and online advocates are finding new ways to connect, launch advocacy and disease awareness campaigns, and use web-based tools to manage chronic conditions.  Their influence has grown to the point where they are even being approached by the pharmaceutical industry to become involved in sponsored initiatives. Does this mean a larger voice for patient experiences and viewpoints or does it hinder trust in the patient community? This panel looks at issues involved in working on both independent and sponsored advocacy projects, and explores the issue of transparency in patient blogging.

I'm so honored that Kim McAllister of Emergiblog invited me to participate.  It will be great to reconnect with Kerri Morrone Sparling of Six Until Me, Manny Hernandez of tuDiabetes and Diabetes Hands Foundation, and Dave deBronkart, aka e-Patient Dave, who is providing the keynote. 

Kerri, Manny, Dave, and I were among the epatients featured at the ePatient Connections Conference just a couple of weeks ago in Philadelphia, Pennsylvania.

Big thanks go to the sponsors, Johnson & Johnson (presenting sponsor), MedPage Today and Campaign for Nursing (supporting sponsors), and WEGO Health (associate sponsor).  The Social Health Track at BlogWorldExpo2010 would not exist without their support.

Tuesday, October 12, 2010

Five-year Anniversary

Five years ago today on October 12, 2005, my neurologist didn't tell me I had MS.  However, this was the day I was officially diagnosed with definite MS. Of course I had been living with MS for longer than that, it is just the day that it became official.  Time certainly has flown....much of that due to the great friends and support I've received from the online MS community.  Thank you!

Saturday, October 9, 2010

Spurs, they are a janglin'

I've got a new diagnosis.  No, it's not yet another autoimmune disease.  But some of the symptoms I was experiencing, I had thought were caused by rheumatoid arthritis.

But, alas, it is not so.

Bone Spurs, that is.

For quite some time, I've had that grinding, crackling noise in my knees when I sit (wasn't all the time, though).  My understanding was that this is extremely common and called crepitus.  I remember my yoga teacher (years ago) saying that it was nothing to be concerned about.  So I ignored the noise.

At various moments over the last several years (shortly after RA was diagnosed), I've wondered if I were developing RA in my knees.  I would feel a full sensation and the knees seem to be swollen, especially my right one.  But we never really looked any further.

Last month, I was climbing up and down a ladder many, many times when prepping and painting the music studio.  (I still need to take photos and post them.  I just got the newly-framed pictures back this soon.)  I know that I put a lot of pressure on my knees, strained them, twisted them, abused them.

Since then, my knees have been hurting, especially my right knee.  It's the one which has felt wrenched.  I would take it easy, taking stairs one at a time to avoid the shooting pain, and hope that healing would occur.  The pain simply became outrageous enough that I called my doctor.

X-rays were taken of my knee and I received a referral to an orthopedic doctor in return.  Bottom line is that I have bone spurs under my kneecap.  I believe that he said the official (long) name of what I have is chondromalacia patella.  (However, I didn't write it down and have just tried to find something which sounds vaguely familiar and fits my symptoms.  I think that's what he said.)

The doctor also used another term which I didn't like to hear.  He mentioned osteoarthritis.  Dang it, early OA of the knee(s). 

The good news was that I was the recipient of a wonderful steroid injection in my knee.  The pain has diminished.  The crackling has diminished.  The joint moves much more smoothly now.   Now I kinda wish that my left knee had received the special treatment too.  It is still stiff and crackly (although not nearly as bad as my right knee had gotten). 

The advice of of the orthopedic doctor?  Ride that stationary bike 30 minutes, 3 times per week.  Best thing I could do for my quality of life as an MS patient.  His advice echoes that of my rheumatologist too.  Now, I really, REALLY, need to move that bike into a location where it is easy to use.

Thursday, October 7, 2010

Carnival of MS Bloggers #73

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

A Good Stretch and Tickling the Funny Bone

by Jennifer Digmann

It was eight years ago today – September 28, 2010. Eight years ago that I met Dan and told my mom, “He’s really cute and sweet, but mom – he likes Springsteen. Yuck! And he loves baseball. How boring!!”

Now eight years later, not only am I happily married to Dan, but I’ve seen Bruce in concert six times – loving every one of them. And on our honeymoon, we saw the Boston Red Sox play baseball in Toronto. So it shouldn’t come as much of a surprise that we celebrated our fifth anniversary by meeting up with friends from Iowa to see a Cubs game in Chicago.

A gorgeous sunny day for baseball.
What a gorgeous, sunny day for baseball.

Dan, our friends Pam, Steve, D.J., Deb, and I found our seats about 30 minutes before the first pitch.  Wrigley Field, what a great evening!!

Our seats were at the very back of the second tier on the third base side. And if you regularly read our blog or know my life with MS, you know a bathroom has to be part of this story. The family restrooms, the ones I use with Dan’s help, unfortunately were located either on the level above us or on the level below us. Imagine having to wait for the elevator every time you had to go to the bathroom!

That’s exactly what I had to do. But it only took me one such trip before tired of making it. Luckily, we noticed vacant accessible seats closer to the family restroom, which coincidently had an incredible view of the ballpark. So I kindly asked a friendly usher, “How can we get seats like these? You know, ones closer to the bathrooms I use?” He understood my situation and encouraged me to check with Fan Services to inquire about upgrading our tickets.

Long story short: We were able to upgrade close to the family restroom on the first level, which landed us 10 rows from the field right behind home plate! It cost us a little more for these great seats, but it was SO worth it.
What a wonderful view of the action.

And just when the night seemed to be perfect, remember that band-aid on Dan’s forehead I mentioned in my last blog? Here’s the less than perfect way that happened - there had to be a way to get me and my powerchair that close to the field, and it involved me taking a motorized chairlift. In helping to secure my chair to said chairlift, my loving husband stumbled - stupid numb MS feet - and he hit his head hard.

Dan had to be treated by the nurses in the ballpark’s First Aid station. They were quick to treat him (no stitches needed!) and he was back to the game before the second inning ended. Hence his name is now, and forever, on file at Wrigley Field… granted it is in medical records but still, how many of us can say that?

What a stretch!
What a stretch!

The game was great, highlighted by standing with Dan during the seventh-inning stretch where Hall of Fame running back Gale Sayers sang “Take Me Out to the Ball Game.”

What a stretch!

And speaking of singing, in the eighth inning three ballpark ushers sang “Happy Anniversary” to us and presented us with a ball used during the game. It even has dirt and scuffs on it. What a souvenir!

And what a night for me, a girl who once hated baseball. A girl who doesn’t let multiple sclerosis stand in the way of experiencing life. A great life with that cute man I met eight years ago.

from Multiple Sclerosis & Me by S.S-O

Saturday I had to take my car into Honda.  I got there and the Honda man opened my door.  I told him my usual, "I'll take a moment..." because in addition to just taking my time to get out the car, I was juggling a book, a cup of coffee, the cane, my phone and my handbag.

He said, "no problem...take ur time.  Would u like me to hold something for u?"

I said, "oh yes, thank u"...

 and handed him the cane!!

It Made Me Laugh
by Karen of Meandering...One moment please
Two neurologists are hot air ballooning when clouds come up and they realize they're lost. They go lower, and suddenly the clouds part and they see that they're passing over a field where a man is on a tractor.

One of the neurologists leans out and yells, "Hey! Where are we?"

The man on the tractor looks up and shouts back, "In a balloon!"

Then the clouds swallow them up again. The first neurologist smiles. "This has been a great day! We saw good scenery, we put back some brewskies, and now to make the day complete, the first guy we meet is a neurologist too."

"Wait a minute!" interjects his friend. "That looked like a farmer to me. What makes you say he's a neurologist?"

"Well, think about how he answered our question. He gave us precise localization and it didn't help a bit."


Going off the SWANK Diet!

This concludes the 73rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 21, 2010. 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 Tuesday, October 19, 2010.

Thank you.

Comments for this post.

Wednesday, October 6, 2010

Gilenya, first MS oral drug, updated information

As soon as the FDA gave Gilenya the approval nod, speculation in the MS community has been 1) when will the drug be available for patients, 2) what will it cost, 3) how many patients will switch from their current therapy to try it?  We now know the answer to two of these questions.

Gilenya will be available for sale in the United States this week, according to a recent Bloomberg report.  It takes time for marketing materials to be approved (which is also done by the FDA) so we might not be seeing ads for Gilenya just yet.  But what better marketing is there with a new drug launch than to read a series of articles and blog posts regarding the new oral medication?  It is our word-of-mouth which will prove to be the most effective marketing, I believe, that Novartis can count on right now.

The biggest concern I have heard from other patients is WHAT IS THE COST?  A spokesman from Novartis informed a Bloomberg reporter that the wholesale price has been set at $4000 per month for the daily pill.  My initial response, and those of other bloggers I follow, was one of outrage and astonishment.  Why in the world would Novartis set a price considerably more expensive than the current self-injections?

Read this post in its entirety:

Gilenya (fingolimod), first MS oral drug, will be available in the US with financial help from Novartis

Tuesday, October 5, 2010

Welcome to the MS Blogosphere

beingtoostrong's blog by Janet
Now I’m just wondering when is it my turn to not be the strong one. So far I have had to be strong for everyone around me. Pretend that this isn’t bothering me. Especially for the kids and my husband. And most of the time I have to even hide my symptoms. So I’d just like to know when everyone else is going to get used to the news so that I can go find a quiet place and start screaming. But I guess that’s what this is all about.
Stranger Feet by Nik
Selfishly addicted to life. I'm a mid-30s, happy, somewhat-judgemental, optimist who loves being in the great outdoors and happens to have MS.
oh blah dee, oh blah dah by princessB
When I see someone struggling with a pebble, I want to hug them and say "You're not alone; I have a pebble, too."  It won't make their pain any less.  But it will make it less frightening.  Less lonely.
MS Renegade by Marie
"A Highly Opinionated Perspective on Living with Multiple Sclerosis"
Life is a Journey, Enjoy It! by Cindy
My name is Cindy, I am married, with 3 grown children, and two spoiled and well loved silky terriers Princess & Taz I re-started this blog since DX 7/29/10 with MS. I hope to use it as a journal as I set off to new adventures of my lil world that I now call "Weeble Land."
Living with Multiple Sclerosis by Diana
Diana Neutze, poet and MS survivor, shares her thoughts. 
The Cutest Chaos by Melissa
I am just an ordinary girl. I am a recovering pack-rat who now loves to organize. It has become an addiction almost. It makes me feel so good when I go through a room and make it look clean and simple! Among other things I love to bake, craft, knit, crochet and cook. I guess you could say I am a Martha Stewart wanna-be. I was diagnosed with MS in 2006 but try not to let it “own me”.
both sides now
Welcome to a blog of many faces. They are all my face, but they look different in different lights. Sometimes what you see can be pretty straight forward. Other times the light can play tricks on your eyes. You can learn many things and nothing, and whereas you can actually gather grains of truth from my frequent poetic licence, you may not want to judge too quickly. All of what you see here is true. But know that not all is completely in focus.
Pick Tammy's Brain by Tammy
I thought I would blog about my experience with MS-Multiple Sclerosis. I wanted to create a venue where my friends and family could check up on me. All are welcome!
6hundred50thousand by Jordan
"A general theory of expanding philosophy"
The MS Champion by Stephen
Hello friends! My name is Stephen. My main points of interest are music, cooking, art, but more importantly advocation and education about Multiple Sclerosis. In my blogs, I will write about stories of the trials and the victories I have gone through living with MS.
All in My Head
"my thoughts, my interests, my goals, my multiple sclerosis"
Sunny, With a Chance of Clouds by Natalie
I'm 27 years old and had been diagnosed with Multiple Sclerosis on Valentine's Day, 2006. Life as I knew it changed dramatically. From using a wheelchair for two years and learning how to walk all over again, my diagnosis has changed my life for the positively better. Having kept my disability a secret for four years, this is my story of living with a diagnosis and how I'm rising about it, embarking on a new life.
Multiple Sclerosis and Beyond
"information, thoughts and comments on multiple sclerosis"
MS, Life and Superpowers by Gav
The inane ramblings and occasionally surreal thoughts about MS, life, superpowers and such like =)
My MS Journey by Ted
I'm 56, a professional, diagnosed with secondary progressive MS in 2004, currently dealing with a self-assessed EDSS of 6.0. I was assessed and treated for CCSVI in Poland on April 29th, 2010.
Demyelinated not Destroyed by Shannon
"Giving help and hope to those living with demyelinating diseases and their loved ones"
Pip's Blog by Pip
I manage the Berkshire MS Therapy Centre ( have an interest in any issues concerning MS and disability. My interests outside work include travel, sailing, film, theatre and music with a particular interest in guitar which I am attempting to learn!
Thoughts and Stories by Mary Ellen
But smiling helps get through the day by day problems. And besides, smiles really are contagious. I hope the one I have right now has caught on to you!
News regarding chronic cerebrospinal venous insufficiency and MS

Saturday, October 2, 2010

ePatient Connections: A Patient's View of Interacting with Pharma

Lisa Emrich
Earlier this week, I traveled to Philadelphia to speak at and attend the 2010 ePatient Connections Conference. This was the 2nd year of the conference, organized by Kevin Kruse and Kru Research, bringing together lifescience companies, marketers, digital and healthcare companies, physicians and patients to discuss better ways to work together to "improve patient outcomes." 

IMG_5265I had submitted or pitched my own story to share at the conference many months ago and was pleased when Kevin Kruse invited me to give a special presentation.  I must admit that I felt some pride knowing that no company pushed to get me scheduled and that as an individual, I was given an equal opportunity to contribute.

IMG_5266As you can see from a few of these photos, my presentation focused on the interaction of pharma companies and patients online.  Engagement is a big buzz word right now and so I used that as a jumping off point.  As MS patients, we frequently see short-term projects come and go online.  Often these initiatives exist merely to provide leads for the companies.  I know that, you know that, we should all go ahead and admit it.  The companies want our contact information.  They ultimately want to sell us something.

Lisa Emrich

However, sometimes the projects will provide a good something good for somebody.  I know that many of my readers were sorely disappointed that I agreed to participate in the "HowIFightMS" unbranded initiative.  It was my hope that folks looking for real-life stories of people living with MS would find our videos and dig further to find our blogs.  I know it that did happen on occasion because I received emails from folks across the country in response to the project.  I was also thanked many times for creating the videos.  Made me feel good about it all.

Lisa EmrichMy talk included 20 slides and not nearly all of them were photographed.  I have included the ones which were in this post.  There are a few slides which I wish had been photographed during the talk.  If they were, they didn't make it onto the flickr stream from which these photos came.

Those slides included tidbits which became the popular soundbites and recommendations from my speech. Who knew that my words would even turn into soundbites... I didn't.

Some quotes from my talk:

"Stop selling and start supporting."

"Don't fear monger or condescend."

"Trust: Build it or destroy it - your choice."

"Abandon your patient or customer group and you destroy trust in the entire pharma industry."

"Listen, talk with me, be honest and transparent, stop trying to sell me, ask what I want and give me more than I expect."

"Do good for others and patients will notice; that's the best marketing of all."

Lisa Emrich
Do I Need You?

There is so much more to be shared regarding what I learned during the conference, but this is it for now.  The topic of empowered patients and the influence of ePatients online have been growing in recent years.  It is good that our voices are being represented at some of these health-related conferences. 

It was a great opportunity to connect with some influential patient leaders whom I follow online.  Fortunately, we'll have another chance to connect and discuss important topics in less than two weeks at BlogWorldExpo2010.   Las Vegas, here I come.  :)

Friday, October 1, 2010

Gilenya priced at $4000/month, 30-50% higher than MS self-injections

If you haven't seen the news yet, Novartis has announced their wholesale price for the newly-approved oral MS drug, Gilenya (aka Fingolimod).

$4,000/month or about $48,000/year

Since the packaging which was being tested in surveys was organized to hold the medication in four one-week supplies, I wonder if truly Gilenya will be priced as $1000/week....making it $52,000/year in all practicality.  [update: It seems that the per box price is set below $4000 and the annual cost is approximately $48,600 in March 2011.]  A Bloomberg article posted yesterday did quote "about $48,000" for the medication.
Novartis Gilenya MS Pill to Cost $48,000 a Year
By Eva von Schaper
Sep 30, 2010

Novartis AG’s multiple sclerosis pill Gilenya will cost $4,000 a month in the U.S., according to a company spokesman.

Novartis has set a wholesale price at about $48,000 annually, Eric Althoff, a spokesman for the Basel, Switzerland- based company, said by e-mail. The company has programs to help patients with the cost of the drug, he said.

Gilenya, the first multiple sclerosis pill on the U.S. market, will be more expensive than injectable competitors such as Biogen Idec Inc.’s Avonex, Merck KGaA’s Rebif and Teva Pharmaceutical Industries Ltd.’s Copaxone, which cost between about $2,800 and $3,200, for a standard month’s supply, according to the Web site

“Gilenya pricing is based on the value it will deliver patients, the scientific innovation it represents and our investment in studies to support the product,” Althoff said.

The U.S. Food and Drug Administration approved Gilenya on Sept. 22.

To contact the reporter on this story: Eva von Schaper in Munich at;
To contact the editor responsible for this story: Phil Serafino at
I'm practically at a loss of what to say, especially since I was in the process of writing an article regarding Gilenya for HealthCentral.  This news brings such disappointment and ire from within that I need to step back and take a few breaths.

Back in 2008, we were having discussions on the blog regarding the various prices which patients (or rather their insurance companies) were being charged for Tysabri infusions.  The billed amounts varied tremendously and one of the differences was related to the infusion centers themselves.  From the MS patients who shared their billed and allowed charges regarding Tysabri infusions, the average total allowed rate was $3500/infusion.  I do not know how much the price of Tysabri may have gone up in the past two years.

According to, a website I like to use for comparisons of cash drug prices, lists the following prices for other MS disease-modifying medications:

Copaxone:   $3403/box or $39,928/year
Rebif:          $2854/box or $36,825/year
Betaseron:   $2950/box or $34,980/year
Avonex:       $2680/box or $34,667/year

For medications which are packaged at 4-weeks supplies, I used the calculator to figure the yearly cost based on 13 boxes of medication.  Back in 2005, I am aware that Copaxone cost $18,000/year.  It has more than doubled since I was diagnosed with MS.

Just to try to be consistent with using numbers based on 4-week packaging, Novartis has chosen a price-point which is 30-50% higher than that of the current MS self-injectible meds.  And it is probably equivalent to the price of Tysabri infusions.  I'm sure that they did their homework and someone at Novartis knows the exact details of their calculations and comparisons.

It disappoints me considerably, too, when I read that analysts are now doubling their initial estimate of Gilenya reaching $1.4 billion in peak sales.  This just reminds me how much money pharmaceutical companies glean from the MS market overall.  It probably doesn't help my viewpoint since I struggled terribly through the patient assistance programs when I fought for affordable access to Copaxone.  Makes my stomach churn.
Novartis Gains FDA Approval for Gilenya Multiple-Sclerosis Drug
By Eva von Schaper
Sep 22, 2010

Novartis AG won U.S. regulatory approval to sell its multiple sclerosis medicine Gilenya, beating Merck KGaA in a race to market the first pill to slow the crippling disease.

The Food and Drug Administration cleared the treatment for use against relapsing forms of multiple sclerosis, the Basel, Switzerland-based company said in a statement. A doctor will have to watch patients for six hours after their first dose of Gilenya, Novartis said.

Regulators also recommend checking patients’ blood and eyes before treatment, a demand less restrictive than expected, said Karl-Heinz Koch, an analyst at Helvea SA in Zurich.

“We were like ‘Wow,’” Koch said in a telephone interview. “This is a very good outcome for Novartis. They’ll really be able to stir up the MS market.” Koch said he now believes Gilenya can achieve double his estimate of $1.4 billion in peak annual sales.

Regulators said doctors can prescribe the drug as the first treatment for MS patients, making it competitive with standard drugs such as Biogen Idec Inc.’s Avonex, Merck’s Rebif and Teva Pharmaceutical Industries Ltd.’s Copaxone. The drug “certainly has multibillion potential,” Trevor Mundel, Novartis’s head of drug development said in a telephone interview today.

Current Therapies
Multiple sclerosis affects 2.5 million people worldwide, many of whom have trouble sticking with current therapies because they’re difficult to use or have side effects, according to the National Multiple Sclerosis Society, a New York-based patient group.

Novartis fell 1 Swiss franc, or 1.8 percent, to 55.45 Swiss francs at 5:30 p.m. in Zurich trading. Merck fell 1.57 euros, or 2.2 percent, to 70.65 euros in Frankfurt, the biggest drop since July 16.

A Novartis spokesman didn’t immediately return a call seeking comment on the price of the drug. Gilenya probably will cost about $30,000 a year in the U.S., said Koch, based on the price of the existing treatments, which ranges from $20,000 to $30,000.

Novartis changed the spelling of the pill’s name to Gilenya from Gilenia during the FDA’s review.

The review, initially set for six months, was delayed by three months when Novartis said May 25 that the FDA requested additional analysis of current data. Rival medicine cladribine, from Darmstadt, Germany-based Merck, won a priority review in July, reducing to six months from 10 the time it will take the FDA to decide on approval, after the agency rejected an earlier application in November. Merck expects a decision on cladribine in the fourth quarter.

European Approval
Novartis expects European regulators to decide on Gilenya’s approval within six months. The European approval is “on track,” Mundel said.

Multiple sclerosis causes the body to attack nerve cells through the immune system. Gilenya, known by the chemical name fingolimod, and cladribine blunt the attack by targeting white blood cells that harm the protective coating of nerve cells. Gilenya keeps lymphocytes, a type of white blood cell, from being released into the immune system, while cladribine works by killing lymphocytes.

Cladribine was cleared more than a decade ago to fight leukemia and has been approved as an MS treatment in Russia and Australia. Gilenya won approval in Russia on Sept. 10.

Three studies released this year showed both pills reduce the risk of relapses and worsening disease, with the Novartis drug also providing a greater benefit than an established interferon therapy in 12 months of treatment. Though the medicines work differently, both suppress the immune system, and patients who took the drugs had higher rates of infections including herpes and shingles.

To contact the reporter on this story: Eva von Schaper in Munich at
To contact the editor responsible for this story: Phil Serafino at

I am excited for the MS community that the long-awaited oral pill has finally arrived.  There will certainly be more coming very soon.

Although it is the insurance companies and government payors who will carry the brunt of Gilenya's price, I'm sure that many, many patients are going to be challenged with high copays or inadequate coverage or are not insured at all.  These are the folks for whom my heart screams.  I've been there, done that....and blogged it!!

To be completely upfront and honest, I am acquainted with a few folks who are involved in marketing for Novartis.  We are connected on Twitter.  Last night I sent out a message to two of those folks and one did respond.  Although he couldn't speak regarding the pricing, he did ask me about contributing ideas for "Prescription Assistance Program Best Practices."  I thought that this was an excellent idea.

So let's turn this discussion into a proactive one.  What would be your suggestions as to how assistance programs could best be set-up, arranged, carried out, etc, etc.?  What have you learned in your own experiences with PAPs?  Please do share in the comments below.

If our ideas help to establish (or change) a system which many other MS patients will navigate, then it is worth it in my mind for us to gather these ideas together.  And, by doing it out in the open, other companies might read our feedback and take it back to the folks who can make adjustments to make the process less painful, or "hellish" as was the term I used last night.