Thursday, January 31, 2008

Billy Tauzin to be honored at Montel Williams MS Foundation Gala

So today, I heard the news today (h/t Pharma Marketing Blog) that The Montel Williams Show will be no more. According to the AP report, the show will cease production after this the 17th season while stations will be offered 52 weeks of the 'best of Montel' reruns.

Then just yesterday, I was alerted to the fact that The Montel Williams MS Foundation Gala & Pro Celebrity Poker Challenge to be held on March 13, 2008 will be honoring none other than Billy Tauzin, former Louisiana congressman and current $2 million-a-year CEO of the lobby group Pharmaceutical Research and Manufacturers of America (PhRMA).
As President and CEO of PhRMA, which represents the country’s leading pharmaceutical research and biotechnology companies, Billy – himself a proud cancer survivor – works to ensure that patients everywhere continue to have access to the miracles of medicines. As part of PhRMA’s mission, Billy Tauzin helps ensure that innovative biopharmaceutical research – including vital research for the treatment of MS –thrives, improving and saving lives everywhere. Under Billy’s leadership, PhRMA is also the official sponsor and driving force behind the Partnership for Prescription Assistance (PPA), which is designed to help un-insured and under-insured Americans get the prescriptions they need to survive. Montel Williams is proud to serve as the national spokesperson for this critically important ongoing initiative.

Ok, I'm like a broken record. The Partnership for Prescription Assistance (PPA) does not, I repeat, does not provide medication to patients. It is a big PR machine to help polish up Big Pharma's image.

Now, it looks like Big Pharma and Montel are going to rubbing each other's backs at this little fundraiser...all in the name of Multiple Sclerosis research. Doesn't that make you feel all warm and fuzzy, just like 'Sharing Miracles'?

Carnival of MS Bloggers #3

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

In Living with Multiple Sclerosis, Anne shares some of her history in and provides reasons why she deals with it the way she has chosen.
"for my husband and my two sons (the only members left of our small family).... for all those friends/acquaintances who tap my knowledge for their personal dilemmas.... for all those who benefit from my educational and disability advocacy.... for my own continuing education of things that matter to me most. And I am still here, after all these years - good, bad and indifferent - and living with Multiple Sclerosis."

For every MSer, the time will come when you must decide whether To Tell or Not To Tell. Depending on what stage of the disease you are in, it is an important question to consider. Anne, from Disabled Not Dead shares her experiences, including some of the disappointing outcomes.
"After dinner, we sat with dessert and the conversation came up again. I then told her about MS and how it affects me. She said, "Anne, I was afraid you were going to tell me you had MS. My mother died of MS." I told her that people rarely DIED of MS, that usually it was a complication FROM MS that killed MS victims. We talked as we cleaned up the kitchen and she turned to me and said, "I don't see how I can remain your friend. I saw what my mother went through and I don't want to see it or go through it with you. I just can't handle it, Anne."I told her that she wasn't as good a friend as I thought she was and we said goodbye and left. We have never seen them again since."

Having chosen "to tell" Callie, blogging at MS My Way, received numerous questions from her co-workers who were curious to know How Was I Diagnosed? Apparently her experience is quite typical and the details may sound familiar to those who have been there. Certainly, go take a gander and see what Callie has to share.

So How Did I Get from There to Here? asks Mandy from MS Maze.

"Five years ago, I had a well-paying full-time job with benefits including health insurance, 401k, a bonus, paid holidays and sick days, and three weeks paid vacation. I had responsibilities I took seriously, thought nothing of putting in extra hours when required and occasionally traveled for business. I was energetic and enjoyed my work. Today, I have a part-time, hourly-paid job with no health benefits, no 401k, no paid holidays or sick days, no paid vacation, and no reason for a bonus.

So how did I get from there to here in five years? A few things contributed, but multiple sclerosis is THE reason I find myself in this position...."

UK blogger, Shirl contemplates "Sleep, Perchance to Dream - for England?""Please excuse the mix of sayings here. Nothing wrong with sleep in itself. It's a good thing. But sleep for me has become a bit too much. As in, I'm having an excess of it and not enjoying it. So, it's for England. As in boring sex.

Tomorrow is another day...except it's here already...where did yesterday go?"

Blogging at Sunshine and Moonlight, Kim describes her frustration as she wonders if she's Robbing Peter to Pay Paul due to her MS.
"...I told the hubby that I felt I was losing myself. Each day, little by little, I was changing. I didn’t like what I saw in the mirror that morning – a tired, young woman, whose spark was quite dim. A young woman who was robbing Peter to pay Paul many different times a day.

I told him that I feel different; that I’m not the bubbly and silly Kim any longer. This, of course, worried me deeply. I will not let M.S. take my spirit. I keep saying that sentence over and over again, but I realized this weekend that M.S. has changed me. So, like everything else, we talked it through."

What could be Scarier than Psycho?
...well a bathtub of course.

Concerned with the effect heat may have on her MS symptoms, Kim says, "I haven’t bathed in 63 days. I don’t use the Jacuzzi to actually “bathe” though, that’s the purpose of the adjacent shower. So, yes, I’ve showered. I just haven’t enjoyed a relaxing bath in over two months."

At BugsBikesBrains, Shauna shares This is My Brain on Drugs ...including photos!! Her story of acceptance is inspiring.
"MS is uncertain, a characteristic about which we MSers like to complain. We don't know what each day will bring. You know what? I realized that this characteristic is something I should celebrate. I may not know what's going to happen, but it just might be great. And I know I have many tomorrows left.

So as much as I, like the rest of humanity, don't like change, I will celebrate my ever changing disease and do what I can do to make a difference."

Jim shares DEEP Thoughts regarding living with disability (deafness), disease (multiple sclerosis), and a spiritual relationship with God in Sunday Morning Spiritual Thoughts: Striving through bumpy road.....
"God's knowledge of my own discouragements are more than just knowledge; His knowledge is more personal, warm, and compassionate. He knows every pains I have been facing. Inside me, I know I am not alone because He is with me. Making a strong conviction to decided on what is affecting me, my attitude is to move on by living in faith. Accepting God's purposes and plans of God however He sees fit in my life. My faith is to believe Him and allow Him to adjust my life according to His will. I am to be aware of obstacles and hindrances I would be facing throughout my life that will throw me off balance. What should motivate me is like an athlete who trains for the Olympics to win a gold medal with such self-discipline and willing to face the challenges."
Jim's blog has become one of my personal daily reads.

So finally, you are reading this for many possible reasons. Perhaps you have MS or know someone living with MS. You enjoy discovering new blogs. Maybe you are a healthcare or policy expert.

Recently here at Brass and Ivory, I asked the question Why My Blog?!! and wondered how this blog will make a difference.

"For this, I don't really have a good answer yet. I didn't start out with lofty goals of being a patient-educator or a patient-advocate. I'm not an owner of a healthcare consultanting company or a political pundit. Nobody is paying me to blog, conduct research, or discuss issues surrounding healthcare or multiple sclerosis. My background is in education but I have never been much of an activist, always preferring to stay in the background. I do enjoy interaction, love comments and increased traffic, and hope to be able to use my growing expertise to help in some humble way."

So I thank you for helping me to understand the 'whys' and envision the 'hows' of communicating here, online, for myself and with each of you.

The next Carnival of MS Bloggers, a valentine special, will be hosted here on February 14, 2008. 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, February 12, 2008.

Thank you.
Comments for this post.

Images from National Gallery of Art, Washington, D.C.

Tuesday, January 29, 2008

Love, Depression, and Loneliness

"I've been thinking...seriously thinking.
Thinking alot."

A line from Later the Same Evening, an opera by composer John Musto and librettist Mark Campbell, inspired by the art of Edward Hopper.

There will always be times which we each may feel a little disconnected from our surroundings or even our companions. We may become lost in our thoughts and become isolated. Or we may wake up one day to Houseguests as Tati described recently.

"The problems arise when things go missing around the house. Things I need. Just the other day I was searching for my self-esteem and found it in the crapper. And someone hid my feelings of worthiness behind my daughter's eyes. (A fine enough place for them to roost, but I need some of my own so she's not responsible for them.) To add insult to injury, this morning I tripped over a fresh batch of I'm-Not-Good-Enough as I stumbled out of bed."

But sometimes, withdrawing can help each of us to care for ourselves as only we are able to. No one knows exactly how and what you need to be Loving Yo'Self as fellow MS blogger, Merelyme, discussed recently as part of the Love-in she has been hosting.

"The first element of self-love I wish to discuss is taking care of ourselves emotionally.

How can we show love for our emotional selves?

For those of us who have mood disorders, this is a big deal. For me there exists a bad feedback loop when I get caught up in depression. The depression itself causes you to not take care of yourself and to resign yourself to doing things which are not so mentally healthy. And these actions or sometimes lack of actions for doing mentally healthy things...causes the depression to linger even more."

In my experience, this is so very true. As you may know, patients with Multiple Sclerosis often experience depression of varying levels. For me, depression introduced itself during college (and most probably earlier in my childhood but that I didn't know how to express my emotions or understand them back then.) At first the physician at the campus clinic labeled me with Seasonal Affective Disorder (SAD), which made sense as I had only ever lived in the big open skies and sunny air of Oklahoma and Texas. That first winter in Bloomington, Indiana, was truly gray and dark and cold and shut-in. At IU even all the buildings are made of gray limestone which match the gray skies which were often full of heavy precipitation blowing from across the northward great lakes. So a brief round of anti-depressant was ordered and which seemed to help just a bit. But over time, it became apparent that SAD was not to blame for the cyclical, clinical depression which hit years before MS.

Another fellow MS blogger, Shirl, referenced the same post of Merelyme's just today in Love and Self-Worth. I agree whole-heartedly with Shirl that persons do not need to be dealing with depression to appreciate the discussions occuring over at Merelyme's place. I like what Shirl had to say:

However, when I say the word 'depression', I know it can mean two things. For the most unfortunate ones suffering clinical or cyclical depression with a capital D, my heart goes out to you. I know you cannot always 'work' your way out of it by simply choosing the correct activities; believing those that say they love you; spending time with the right people - those that increase your confidence rather than destroy it. Although a certain amount of these strategies do help once the positive frame of mind begins to peep through the overwhelming gloom.

My own 'depression' is more like a bad day or two or three. It is not easy to live through BUT coping mechanisms aways bring me through. That, and the unquestioning love of Pete. Merelyme's feature caused me to stop and think about my own ways of getting through each day with positive, fulfilling activities and relationships. Please read it.

To the number of other MS bloggers who have been struggling with depression recently (myself included, and I know you are out there) please know that support is abundant and often talking/writing about it helps to loosen its' grip on your soul.

Only recently did I decide to open myself up in a more personal way and join the community of MS bloggers. And what a community I have found. [You health policy wonk guys are nice too, but this is different.]

To those dealing with MS and its' related difficulties out there in the blogosphere, and for whom I might be able to use my knowledge to assistance, please don't hesitatate to contact me. I'm here for you (as well as myself.)

Monday, January 28, 2008

As the World Passes By...

The Long Call from Wagner's opera Siegfried

part of the massive Ring Cycle

Without going into all the details of the storyline (which by the way is quite a good REALLY, it is), the main character Siegfried at this moment (Act 2, scene 2) plays a silver horn in communication with an enchanted bird in the forest.

[Ok, you can stop laughing now.]

What do I like about this video?

The hustle of the world passing by and the apparent look of the hornplayer being out of place and perhaps feeling awkward. The simplicity as she walks across the lobby of the opera house, pauses, and proceeds to play the 'long call' with such power and oneness with her horn. The world has retreated from view and her presence expands to fill every corner of the hall.

I conjur this image to remind me what it is like when one is completely lost in the moment and allows his soul to fly.

Now being a musician, I know all too well that this is NOT exactly what automatically happens when one is performing. Instead, you become very aware of your intent and actions demanded of such heightened concentration. But in that, maybe you do lose a little bit of your self-consciousness and find a flow existing beyond yourself.

So here's my question to you today:

What activity in your life most causes the world to retreat and allows you to spread your wings and fly, if even for a moment?

Saturday, January 26, 2008

MS Carnival #3 - Submissions Due

"A gathering of MS Bloggers sharing thoughts, opinions, news,
and inspiration around the Blogosphere."

It's time to prepare for the next Carnival of MS Bloggers and to feature the best of the MS blogosphere. When submitting your post, please include:
  • Your blog's URL
  • Your post's URL
  • The post's permalink URL (if available)
  • Brief summary of the post
  • Category - Inspiration, Life, MS News, Multiple Sclerosis, Opinion
Submission Deadline - Tuesday, January 29, 2008 (noon)

You may submit via Blog Carnival or email.
If you are interested in hosting future Carnivals, please contact Lisa.

Participating is Easy!!

If you are a blogger with MS or someone who blogs about MS, you are invited to participate. Here's what you should do...
  • Choose one of your best posts from the past 2-3 weeks
  • The topic does not need to be limited to multiple sclerosis
  • Submit the post for consideration in the next Carnival edition
  • Be sure to include a brief synopsis (or summary) of the post
When the Carnival is published, you will receive an email from me that the edition is available. Then, post an announcement on your blog (in a separate post) that the Carnival is available, including a link back to the specific edition.

Let the community grow!!

Friday, January 25, 2008

Why My Blog?!!

Today, I'm going to diverge a little from serious health policy talk and inspirational posts touching on multiple sclerosis or human relationships.

Today I'm asking some questions --

"Who am I? professional musician, multiple sclerosis patient?"

I am a professional musician. This is how I earn money and pay bills and taxes. I have played the piano since the age of 7 and french horn since the age of 11. I never questioned why I love music, I just do. But you might be amazed at how many professional musicians cease to listen and explore music over time. I'm probably one of those...I like to stick to the things I know well. It's comforting, like homemade macaroni and cheese.

I am a patient living with multiple sclerosis (and rheumatoid arthritis...and hypothyroidism...and some depression mixed in, although well managed.) These things just crashed the party and forced their way in, not invited...but here to stay I guess.

"What am I? health policy wonk, patient advocate, or educator?"

Last summer I had been reading a health wonk expert's blog and encountered a post which made me want to comment. I had a deep need to say something. But a blogger account was necessary to proceed - ok done. Then the comments were moderated by the blogowner - ok wait. comment was approved and posted - what a little thrill that was. Somebody thought my comment was worthy enough to allow on their site - somebody determined that I had made a valid point. Very cool.

Then, my sweetie asked me a thoughtful question. He wanted to know what I was going to do with all of my research and the information I had gathered since the ms diagnosis. Hmmm...I had files on my computer full with interesting stuff...I had piles of paper proving that my struggles have been real...I had valuable first-hand experience with the "healthcare system" which few others gain (quite thankfully.) What should I do with that?

I started this blog with the intent to incorporate bits of my personal experience with thoughtful commentary on the issues around healthcare reform. At first, I was hesitant to discuss my struggles but they are what brought me to this point in time.

"What have I learned so far?"

My primary challenge has been from the cost of medication and the lack of real help available and the surprising programs which actually do work. Then I became aware of the briar patch which is health policy and those who seek to influence it. Before MS, I had never given much thought to how health insurance influences medical care, much less give any thought to the concept of a single-payer national health system or it's reputation as socialized medicine. I have researched the role of taxpayer subsidies in healthcare, the repeated SCHIP vetoes, and government programs for the disabled.

I learned of a minor drug company which was using orphan drug status to justify it's 15x price increase for a drug indicated in the treatment of MS exacerbations. The drug company, Questcor, claimed that income losses were to blame, announced their third Quarter earnings, created a perverse opportunity for easy profit, and in December saw key insiders cashing in some amazing profit.

"What drives me to continue talking to myself, although I know there are a few eavesdroppers out there?"

I have contemplated the reasons why MS patients do not have generic biologic medications available, how much funding is going to MS research, and how patients can become empowered with knowledge. Those who wish to influence public perceptions of the pharmaceutical industry, manipulate policies regarding expensive patients, or invade the privacy of the doctor/patient relationship drive me absolutely crazy.

"How will this blog make a difference?"

For this, I don't really have a good answer yet. I didn't start out with lofty goals of being a patient-educator or a patient-advocate. I'm not an owner of a healthcare consultanting company or a political pundit. Nobody is paying me to blog, conduct research, or discuss issues surrounding healthcare or multiple sclerosis. My background is in education but I have never been much of an activist, always preferring to stay in the background. I do enjoy interaction, love comments and increased traffic, and hope to be able to use my growing expertise to help in some humble way.

Final question - "Where do I go from here?"

Wednesday, January 23, 2008

Invisible Challenges

Have you ever wished for a helping hand, maybe loading groceries into your vehicle, but you look just fine on the outside?

Do you imagine receiving suspicious looks after you've just parked in a handicapped parking space and walk into the store without obvious difficulty walking?

Or do you find yourself keeping personal concerns or challenges to yourself out of a desire to appear as close to 'normal' as possible?

Sorry, I don't have any great words of wisdom. But I do have a brief story, I'll share with you. Maybe you can relate.

Some of you may know that I teach piano lessons to students of various ages and abilities. Often when an older child in a family begins lessons, younger siblings also begin after they've developed an interest. One family I teach has four children who all take lessons and their mom has told me that I'm not allowed to: 1) move, 2) stop teaching, 3) or otherwise be unable to teach her children until the youngest reaches the age of 18. Now that's loyalty.

A couple of years ago, a new family joined the music studio when the older of two girls began lessons. After one year, the younger sister (we'll call her K.) wanted to start lessons, too. So that summer, K. began playing piano. Now over the years, I've developed some rather effective ways to engage new students and like to establish a natural flow in communication from the very beginning. However during that summer, K. was hard to read and would often not respond directly to questions or tasks being asked of her. I just chalked this up to the process of establishing mutual expectations and trust in each other.

After the school year began, K. and I were having a particularly difficult lesson and seemed to be unable to relate. Afterwards, K.'s mother asked her if she understood what I was asking her to do. K. responded that she did, but I took the opportunity to ask the mom a question.

"Is there anything I should know?"

I asked this because I have had parents who didn't think it important enough to share that their child was dyslexic or experienced some other type of learning difficulty. But this mom's response surprised me.

"Oh, K.'s deaf...didn't you know?"

Whoa....deaf. "No, I didn't."

"You can't tell, can you?" Well, obviously not.

"She's still learning to distinguish between background and foreground sounds. I suspect K. is having a hard time understanding what you are saying while you or she is playing at the same time. That's why I asked her..."

Ok, note to self. Do not talk and play at the same time. Easy enough.

To K., "please, if you don't understand something, stop me and ask. I often have to ask people to repeat themselves because I don't always understand them the first time either."

It took a little while for this message to truly sink in. But getting past the barriers to communication has afforded us a much richer relationship.

Also, K. no longer hides her earpiece under her hair, nor turns away when she needs to change the battery which allows sound to stimulate her brain through her cochlear implant. Now she can be more herself around me and I can be respectful her needs, both without either of us making a big deal about it.

I found it interesting that K. was so very self-conscious of her earpiece, especially when her father is deaf and has a cochlear implant as well. Wanting to appear absolutely 'normal' and devoid of special needs, K. was often trying to 'show' how very smart she is and not focusing on actually learning to approach the task at hand. Being willing to look me in the face and say, "what did you say?," K. demonstrates her intelligence and true desire to communicate. To understand and be understood.

Each of us face invisible challenges which others rarely are aware of. Ask yourself, "is there something which if I shared with those around me I could be understood better and in turn understand myself better?"

Are you trying to appear 'normal' and in doing so cutting yourself off from those around you? Are you loath to ask for a helping hand when needed? Are you suspicious of yourself when you park in the handicapped space?

Please, do yourself a favor and let those trusted individuals in your life know when you are faced by an invisible challenge. The solution might be as simple as talking after playing a passage on the piano, not during.

Monday, January 21, 2008

Pharmaceuticals and Nutrition - Must MS Patients Choose One Over the Other?

In response to my post, The Value of Money or the Value of Health..., a fellow MSer from Toronto left an interesting comment regarding the use of diet to 'treat' her multiple sclerosis. She referenced a presentation given in Alberta last October by DIRECT-MS, Diet Research into the Cause and Treatment of Multiple Sclerosis, which also supports The Best Bet Diet.

Orla Hegarty is "40 years old and has had a passion for cooking since she was able to whip up her first batch of cookies at the age of 10 or so. She published her first recipe in 1977 at this same age. She blames it all on Laura Ingalls Wilder." Orla blogs at Great Mastications and provides recipes which are diary-free, gluten-free, legume-free, and tomato-free. Her recipes look pretty tasty and you should check them out.

Orla makes the point that her choice of treatment costs considerably less than the $21,000 per year that prescription Copaxone costs. Personally, I do not believe that the use of appropriate pharmaceuticals must be divorced from the use of diet to help control MS symptoms. And I am a little sad that MSers who choose a diet-only approach feel the need to carry a chip on their shoulder when it comes to the skepticism of an MS Cause or Cure found in nutrition from the evidence-based medical community.

Orla also says..."Patient advocacy is a moot [sic] point when it comes to patients choosing diet modifications." I believe that patient advocacy can be executed in a wide variety of situations. Perhaps there is a need to increase the availability of high-quality, fresh foods in urban areas without access to locally grown foodstuffs. Or why ARE so many processed foods, made to be tasty by substances such as high-fructose corn syrup or partially-hydrogenated oils, available at such cheap prices? Could there be a need to eliminate or limit federal farm subsidies which distort nutritional incentives? Just some thoughts.

Namaste to you, Orla, and thank you for visiting.

NARCOMS Project - MS Patient Registry

In case you don't already know about it, or haven't taken the time to contribute, the NARCOMS Patient Registry needs your input as a patient with Multiple Sclerosis. It's easy, it's confidential, and it's essential for rapid progress in the development of better treatments for MS and for greater understanding of the disease. As of November 2007, the number of participants has reached 37,600 and new participants are joining every day. (Enroll online)

Here's some information regarding the project and the organization behind it, CMSC. My neurologist happens to be one of the committee chairmen and has been involved in the Consortium from its beginning in 1986. This is an extremely worthwhile use of your time. Go check it out.

The Consortium of Multiple Sclerosis Centers (CMSC) provides leadership in clinical research and education; develops vehicles to share information and knowledge among members; disseminates information to the health care community and to persons affected by Multiple Sclerosis; and develops and implements mechanisms to influence health care delivery.

Organized in 1986 under the direction of neurologists interested in the clinical care of multiple sclerosis, CMSC has grown to become a multi-disciplinary organization providing a team approach to MS care and a network for all health care professionals and others specializing in the care of persons with MS. Since 1986, the CMSC has grown rapidly and currently has over 200 member centers in the United States, Canada, and Europe, representing over 4,000 health care professionals worldwide who provide care for more than 150,000 individuals with multiple sclerosis.

The CMSC, in conjunction with Rehabilitation in Multiple Sclerosis (RIMS), has developed an online journal, the International Journal of Multiple Sclerosis Care which seeks to improve the quality of care for patients with multiple sclerosis through international, multidisciplinary cooperation and communication. Published quarterly, the International Journal of Multiple Sclerosis Care (IJMSC) contains peer-reviewed clinical and original research articles on topics of interest to MS care providers, including physician care, nursing care, rehabilitation, psychological care, and psychosocial care.

The North American Research Committee On Multiple Sclerosis (NARCOMS) project was initiated in 1993 by CMSC and is led by Dr. Tim Vollmer, an international leader in multiple sclerosis care, immunology, and MS research. The project is based at Barrow Neurological Institute in Phoenix, Arizona. NARCOMS has developed an MS Patient Registry that is the largest of its kind in the world. The primary purpose of the NARCOMS project is to facilitate multi-center research in the broad field of Multiple Sclerosis. Collaboration between centers of excellence in Multiple Sclerosis is essential for rapid progress in the development of better treatments for MS and for greater understanding of the disease.

As of November 2007, the number of MS Patient Registry participants has reached 32,600 and new participants are joining every day. Convenient online enrollment for anybody diagnosed with MS is available at this website (Enroll online). Individuals with Multiple Sclerosis who enroll in the NARCOMS Registry receive the printed version of the Multiple Sclerosis Quarterly Report (MSQR) four times a year, free of charge. The MSQR includes original review articles, NARCOMS news, breaking news, as well as listings of clinical trials in progress and open for enrollment.

The International Committee on Databases in Multiple Sclerosis (ICODIMS) was founded in 2000 in order to create a collaborative milieu for databases and registries worldwide. Currently there are 12 countries participating in the ICODIMS project, with representatives from Australia, throughout Europe, Latin America, and North America. These representatives have met to establish the basic criteria needed for an international cross talk: what data should be collected to assure compatibility among the various cultures. ICODIMS hopes to use the results of this work to compare and evaluate MS patients from different environments, compare their characteristics treatments and outcomes and to establish standard terminologies.

NARCOMS is a project of the Consortium of Multiple Sclerosis Centers and is supported by grants and in-kind services from United Spinal Association, Paralyzed Veterans Association (PVA), and the National Multiple Sclerosis Society. Additional support has been provided by unrestricted grants from the following pharmaceutical companies: Berlex, Biogen, Immunex, Serono, and Teva Neuroscience.

Thursday, January 17, 2008

Hey, Big Pharma!! My Doctor's Visit is Private, Stay Out!!

Yesterday, Dr.Rich pointed to an article in the Philadelphia Inquirer which induced copious amounts of moaning and ranting within my living room.

Here's a brief excerpt [emphasis mine]:

When Zaccary Newsham-Quinn, 4, visits his pediatrician in Levittown, the doctor, Nathan Zankman, asks if he would be willing to have their conversation recorded for use in medical research.

Zaccary's mother, Danielle, agrees, and signs a consent form, and the doctor turns on a small digital recorder that captures every word between the physician and patient behind the examining-room door.

Later, Zankman sends the recording via computer, along with others he made that day, to a Fort Washington start-up technology company, Verilogue Inc.

Verilogue has software that analyzes the real-time patient-physician interactions, compiles a verbatim transcript, and puts the recording and transcript in a database that Verilogue clients in the health-care industry will use to learn what doctors and patients actually say to each other about diseases and medicines.

So what kind of medical research is being done here?

Capturing real physician-patient interactions is new to pharmaceutical market research. The idea came from Verilogue's two young founders, Jeff Kozloff and Jamison Barnett, both 31, who had worked in pharmaceutical market research, and who saw a need to go beyond traditional recall methods, such as focus groups and interviews based on memory after the fact.

"The idea is, by increasing access to information where it's truly happening, at the point of practice, you are increasing knowledge, and will be able to come up with better support and communication materials for physicians and patients because they shared their experience," said Kozloff, Verilogue's president and chief executive officer.

The research will lead to improved marketing materials...aaah. So far Verilogue has nine large (unidentified) pharmaceutical clients and "a network of participating physicians nationwide."
Doctors record their interactions with patients during two days each month, and are paid what Verilogue said is a nominal fee for their time.
The Inquirer reports that Dr. Zankman has been recording patient visits a couple days a month in the three months since he signed up with Verilogue. Zankman says that he has concentrated on four medical conditions chosen by Verilogue which are fairly common in pediatrics: allergic rhinitis, asthma, persisitent asthma in a child less than 4 years, and ADHD.

When Zankman asked Danielle Newsham, 29, if she would be willing for Zaccary's office appointment to be audio-recorded and used for research by companies, she quickly said yes.

"We're here quite frequently. I look at it as helping medical research," said Newsham. [...]

"I'm a firm believer in science and technology. If companies could learn something from conversations about my son's condition, maybe it could help someone else."

But it doesn't sound like Verilogue's service is aimed to boost science and technology. It is aimed at the marketing efforts of pharmaceutical and biotech companies who desire to "get a glimpse of the patient's state of mind, progression of disease, and what is said about the company's medications - or a competitor's drug."

Regarding the nominal fee paid to participating physicians, the company said "the fee is similar to stipends paid to medical investigators in other clinical research."

"We are not the next Google, but we are revolutionizing our own segment in the industry," Kozloff said. "The physician-patient conversation behind closed doors is the epicenter. The long-term value of what we are doing has tremendous upside potential for everyone in the health-care continuum."

I agree that the physician-patient relationship is the epicenter of healthcare, or at least it should be. But it is a confidential, privileged relationship and should not be infringed upon by those seeking to tweak a marketing message. I find it disappointing that physicians would agree to this "research" in exchange for a stipend. And what about the extra time it takes to obtain the agreement from the patient or even explaining what the "research" is about. Time is money and time is limited in a doctor's visit.

Beyond the issues of coersion, the waste of precious doctor-patient face time, and the misinformation regarding the true nature of the research, Dr.Rich made a wonderful point regarding compensation for the study.

This is a purely commercial endeavor; it has nothing whatever to do with scientific or medical advancement, and everything to do with marketing advancement (specifically, to tailor marketing messages in order to optimize drug sales). So at the end of the day the patient and her little son were unwittingly drafted into a particularly sophisticated focus group.

Traditionally, participants in market research focus groups are paid for their efforts. Since in this case the patient is at least as much a participant in the generation of marketable data as is the doctor, the patient undeniably deserves his/her fair share of the proceeds. The cut should be at least a 50%, or preferably more since it is the patient whose personal medical information is being risked in a private, for-sale-to-whomever, corporate-controlled database. There’s no indication that the patients are being informed that this is a money-generating endeavor, let alone being offered their fair share in compensation for their participation and their personal risk.

I've participated in a focus group here in DC and was compensated generously for my time. But my experience was much different than if I had arrived at my doctor's office and was asked on the spot to allow my visit to be recorded for "research."

If I choose to respond to an invitation aimed at market research, then that is my perogative. If my doctor is paid to ask me to participate in market research, then a conflict of interest has arisen. This goes byond the drug rep trinkets and gifts which are increasingly becoming unwelcome in the physician's office and in various healthcare settings.

My message to Big Pharma and their marketing teams...stay out of my doctor's office!!! You are not welcome there, at least while I'm talking.

The value of money or the value of health - What do you see?

What does money look like to someone with multiple sclerosis?

This is what $7000 looks like to me....120 pre-filled syringes...120 mL.
Four months worth of daily self-injectable medication.

One syringe = 1 mL
120 mL = 4 ounces
1 ounce = $1750

But it won't pay the bills nor would it pay for an Italian vacation. You might look at it like an investment in future health and mobility. Put the money in now and hopefully reap the benefits later if all goes well.

This is what $7000 looks like to most people....$7000.

It could be used to pay the mortgage, to purchase a new french horn, or to provide for that Italian vacation. But for someone with multiple sclerosis, it likely goes to pay for out-of-pocket healthcare expenses.

Although I have a private, individual health insurance policy with a major carrier in the Washington, D.C. area, I still have to pay this $21,000 annual expense for a single medication designed to slow-down the MS disease progression. It might work, it might not work. I can only hope it does.

My insurance premiums now cost approximately $3500 each year, but the company still will not cover my medication in full. It will payout $1500 each year for medication, but the rest is my cost.

But what if you don't earn enough money to be able to spend an extra $21,000 each and every year in the hopes of avoiding some level of disability in the future?

Well, the patient contact organization created by the pharmaceutical company (in this case Shared Solutions) refers your case to their benefits investigation team. This team will also run a quick search for government programs in your area for which you might qualify.

What if your state or locality does not have a pharmaceutical program which will cover this medication?

Then your case is referred to the National Organization of Rare Disorders, Inc. (NORD) who administers the prescription assistance program for Copaxone/Teva.

What kind of information does NORD require?

Recent paystubs, federal tax return, 3 months of bank and investment statements, and a signed application form verifying assets, income, and expenses. If you are not single, all of the above information is also needed regarding your spouse.

What does it take to qualify for help in paying $21,000?

Well, what I do know is that with an income of $27,000, a single 37-year old female with some money in retirement and savings might qualify for a 25% award equal to 3 months of medication provided by NORD.

When that same single female, at age 38, earns an income of $19,400 (less than 200% federal poverty level), she discovers the magic threshold at which NORD will provide 100% of the $21,000 medication.

Ironically, today as I have prescription costs on my mind, I received the reapplication form from NORD. Within the letter accompanying the application, NORD reminds us -

"As the Program is one of last resort, we must remind you that continued participation in the program is not guaranteed. Also, allotments awarded may vary from year to year as they are based on dosage, financial need, and the relative size of the Program itself."

Nothing is guaranteed...and each year this now 39-year old female must submit all her financial information for evaluation.

How truly needy is she and how deserving of a helping hand?

It's a numbers game really. As a self-employed person, even I don't know exactly what I've earned until I sit down at year end and calculate all deposits and all expenses. But I did calculate once that I would need to gross an additional $30,000 to be able to pay the $21,000 (plus increased taxes and SEP contribution) and maintain the same take-home pay.

Anyway you look at it, that $7000 worth of medication is an expensive forfeiture of $10,000 earning power and the future financial security that the $10K might provide. I feel as though I have to give up alot in order to gain some hope of slowing this MonSter down.

How do you view your medication?

Carnival of MS Bloggers #2

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

¤¤¤ Life ¤¤¤

How would you answer the question, "well, what do you do all day?"
Some days, plans go out of the window as soon as I wake up. We had visitors yesterday. Although I slept well last night, the fatigue today is not correlated to that sleep at all. The fatigue today hurts like I have flu coming. It may well be. But experience tells me this is not likely. It is just my pathetic immune system fighting the rest of my bodily functions that involve the nervous system.

Today, everything has been slow. Walking around the flat, slowly. Washing up the breakfast things took ages. Loading the washing machine...placing the washed clothes on the airing rack...peeling some potatoes and chopping the corned beef that Pete is now cooking into a delicious hash.
Sometimes "the pain of fatigue removes all the emotional impact of fun, fulfilment, creativity, achievement and self-worth." - Shirl's the Girl

Fortunately, Shirl is a "tell it like it is" kinda gal. Go visit her new digs.

¤¤¤ Multiple Sclerosis ¤¤¤

We like to know folks care, but what should they ask?

Over the holidays, I see family and friends I haven't seen for a year and there's always the inevitable awkwardness where they are trying to ask me how I feel. Some of the phrasing includes:
"So, how are you feeling?"
"Is everything going OK?"
"You look great - are you doing all right?"
"What happened to all your hair?"
OK, I don't think the last one has to do with multiple sclerosis, but I do tend to blame my male pattern baldness on MS. As I've said before, what good is MS if I can't blame things on it?
Each time someone asks a question and sincerely wants to know how you're doing, it may be an opportunity to spread awareness about multiple sclerosis. Or it may be a chance to reflect upon how you are managing your MS and working to move it off centerstage.

Sometimes it comes down to how much you know yourself and how much you KnowMS.

¤¤¤ Opinion ¤¤¤

January 2008 is National Blood Donor Month. Blood donation continues to be a hot topic with M.S. patients. Can we donate or are we deferred? Should we donate even if our blood is readily accepted? Kim Fabrizio explores the issue in To Give or Not to Give.

Life isn’t always easy, but despite being bruised and confused this past week, Kim let seduction sweep her away – to the point that she actually forgot about having M.S. for one full day!

¤¤¤ Life ¤¤¤

Courtney Carver is officially in training for the 100k "Ride the Vineyard" MS Bike Tour in May. When asked why she rides?

Courtney simply says, "Because I Can."
Things may be different tomorrow, but today, I can ride and so I will. When I have thought about exercise in the past, I always think..."I HAVE to work out tomorrow" (or I will get a big butt!) or "I NEED to work out tonight" (or I will be really grumpy or stressed out) but to keep things simple this time around in my new commitment to exercise, I will just do it because I CAN.
Courtney is determined to make no time for MS.

¤¤¤ Opinion ¤¤¤

In general, MS bloggers want to share their stories. They want to connect with other MSers who may have had similar experiences. However, what happens when Big Pharma tries to burnish a tainted reputation, creates "fake news/public affairs" infomercial, and does a little astroturfing online? For the answer, check out "'Sharing Miracles' brought to you by PhRMA" brought to you by Lisa Emrich.

¤¤¤ Inspiration ¤¤¤

Each week, O Sole Mio Sundays on Sunshine and Moonlight features the stories of others who let their Moonlight times inspire them to let the positive blossom from the negative. 'O Sole Mio' translates to 'My Sun' in Italian. So many patients with M.S. have made something positive come out of their diagnoses. Read the stories of others here and submit your own story for a future edition.

¤¤¤ Multiple Sclerosis ¤¤¤

The next Carnival of MS Bloggers will be hosted here on January 31, 2008. 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, January 30, 2008.

Thanks for visiting and happy blogging in the new year.

Thank you.
Comments for this Post

Tuesday, January 15, 2008

Just a Quick Note

Hello friends and readers.

Just a quick note to inform you that I am having computer problems.
First it was problems with my DSL which seems to be working fine now.
But this morning my power adaptor 'burned out' and I have 2 hours of power remaining on my laptop. This is the 2nd power adaptor to have this same problem. Aargh!!

I was working on some great posts which will simply have to wait. And I will be back as soon as possible.


Yeah, I'm back!!! Thanks to a friend's loaned power cord.

Friday, January 11, 2008

MS Carnival #2 - Submissions Due

It's time to prepare for the next Carnival of MS Bloggers and to feature the best of the MS blogosphere. When submitting your post, please include:

  • Your blog's URL
  • Your post's URL
  • The post's permalink URL (if available)
  • Brief summary of the post
  • Category - Inspiration, Life, MS News, Multiple Sclerosis, Opinion

Submission Deadline - Tuesday, January 15, 2008 (noon)

You may submit via Blog Carnival or email.
If you are interested in hosting future Carnivals, please contact Lisa.

Thursday, January 10, 2008

The Health Wonk Review is UP at Bob's Place!!

Robert Laszewski, health care blogger extraordinaire at Health Care Policy and Marketplace Review hosts the first Health Wonk Review in 2008.

With a little light humor mixed in, Bob highlights eighteen of the best posts in the health blog wonkosphere. Although Bob comments that "the number and quality of health care blogs continues to grow," he was generous enough to include my post regarding Pharmaceutical Samples and contrast it to one by David Williams at the Health Business Blog.

Thanks Bob, from your favorite health care musician.

Remove Financial Disincentives and Increase Prescription Compliance

Don't you enjoy reading something and going...."Yes! Of course!"

Besides the 'well, duh' reaction to a study published in the January/February issue of Health Affairs, I think those interested in healthcare reform should examine what exactly is being measured here.

The study was led by researchers at University of Michigan and Harvard University. The study was funded by GlaxoSmithKline and Pfizer, and was conducted in part by ActiveHealth, an Aetna subsidiary that designs the kind of plans discussed.

At the University of Michigan, the Center for Value-Based Insurance Design was established in 2005 "to develop, evaluate, and promote value-based insurance initiatives that achieve improvements in health outcomes and contain health care costs."
Value-based insurance design offers a potential solution to the health care financing crisis. Value – the clinical benefit achieved for the money spent – is absent from the current dialogue on how to solve the health care dilemma. Instead, the dialogue focuses on two trends in benefit design – cost containment and quality improvement – which create a conflict of incentives for patients.
Money is a huge motivator in American society. We work for money, we worry about money, we manage our money, we spend our money, we save our money, we fight over money, we often measure something's importance by it's monetary value. Money, money, money....

Insurance companies and large employers are spending increasing amounts of money in disease management services, in part, to help them limit future costs and ultimately save money.

The study in question sought to measure the impact of offering lower drug co-payments to people with diabetes, high blood pressure and other chronic diseases on the increased use of preventive medicines. Higher co-pays are frequently used by American employers to cope with the rising costs of health insurance and require workers and retirees to pay more out of their own pockets. But does this is ultimately help patients and save money for the employer in the long run?

Proper treatment for a number of chronic illnesses can be very effective at preventing complications of disease and can help patients stay physically active and productive employees. But that treatment is only as good as when the patient stays compliant with therapy. That means the patients needs to take the recommended medication on the recommended dosing schedule.

The study compared two companies, one of which cut employees’ co-payments on a few key drugs, such as statins for cholesterol and beta blockers for high blood pressure. Generics were free to employees, and the co-pays for branded drugs were cut in half. Cutting co-pays reduced non-adherence by 7-14%.
[E]mployers increasingly enroll beneficiaries in expensive disease management programs designed to improve patient self-management, often by intervening to enhance compliance with specific medications. However, at the same time, rising copayments and greater cost-sharing create financial barriers that discourage the use of recommended services. When patients are required to pay more for their health care, it is well known that they buy less – of both essential and excessive therapies alike.
"All research to this point has shown that individuals will not buy important medical services even if there's a small financial barrier: $5 or even $2," senior study author Dr. Mark Fendrick, of the University of Michigan Medical School and School of Public Health, said in a prepared statement. "This study showed that when you remove those barriers, people started using these high-value services significantly more. These results bolster the idea that health insurance benefits should be designed in ways that produce the most health per dollar spent."

Many companies are already paying for disease management programs to help patients with chronic diseases such as diabetes. So why not encourage people to take the medicines they need. You “pay a nurse $65 an hour to call call a diabetic [employee] and say, ‘Take a beta blocker.’ And the employee says ‘I know it’s important, why did you raise my copay from $15 to $30,” Fendrick says. “It’s a classic example of the misalignment of incentives in the U.S. health care system.”

In response to the report on the WSJ Health Blog, I commented:
Lower copays is a nice idea, but how about requiring insurance companies to cover disease-modifying meds under major medical instead of pharmacy benefits. Or not allowing insurance companies, such as the local Carefirst BCBS in DC, to establish an annual $1500 limit for drug benefits in their individual policies. The Carefirst policy I’ve had for over 7 years has maintained the same $1500 cap for drug benefits. However, the initial wording of my policy implied that a 10% coinsurance would apply after the limit was reached, but that has not not been the case. $1500 covers only 3.5 weeks (25 days) of my MS med, much less any other of the meds I take for Rheumatoid Arthritis or Hypothyroidism, each drug which works to limit damage and allow me to stay active. Preventing further damage and staying active seem pretty important to me. It’s just unfortunate that my copays for meds end up being about $25,000 each year after insurance has paid their ’share.’
And reader Tom responded:
Lisa’s case typifies what really needs repairing in the health care system. This incidentally, is why there is public outrage directed at pharmaceutical companies that is totally unjustified. The culprit is and has been insurance companies. Remember, they are the entity that the Federal Government uses to administrate Medicare. Employers and employees pay for their coverage, it is not gratuitous. The companies then “decide” what they will pay for. Does the term “racket” edge to the forefront? Give us all your money, but we really don’t want to pay anything out. THIS is the mantra that needs addressed.
After a lively discussion, reader CR concluded:
…getting back to the actual article to which this exchange is attached… I would simply point out that, while Fendrick’s mother is right about the “duh” factor in his studies, the notion of aligning co-payments to achieve treatment objectives is a benefit design innovation. Further, it’s important to note that it was not an innovation that came out of academia or the government, but large employers. Pitney Bowes took the lead in creating, evaluating and reporting results of this value-driven approach, which was first given wide report in WSJ in May of 2004. Fueled by ongoing additional research efforts by Fendrick and others, the concept continues to be refined. Point is, employers–seeking better value from the health care supply chain–innovate solutions that would never be conceived of by bureaucrats.
The innovative idea of connecting copays to compliance and health outcomes is a smart benefit design. If only patients were valued not by their costs to the system, but by their positive health outcomes contributing to the overall economic system.

And finally Peter Pitts commented : Treating chronic disease via appropriate pharmaceutical intervention saves both money and lives -- benefiting both the public purse and the public health. And isn't that what health care is all about.

Amen Peter.

Tuesday, January 8, 2008

Risks of MS Fatigue in the Professional Musician and Suggestions for Coping

  1. Be a professional musician who chooses to teach private lessons.
  2. Teach private lessons to young pianists and french hornists of various ages and skill levels.
  3. Have a little (debilitating) MS fatigue which fortunately responds well to Provigil, albeit at the higher doses costing about $18/day.
  4. Taper Provigil use over the holidays, simply going day by day, stop when you drop, and go when you can.
  5. Return from the holiday break, forget how much brain power and energy is actually required to teach one-on-one music lessons, and go it alone without the help of pharmaceuticals.
  6. Fiercely fight the pull to disengage, blink repeatedly to attempt to regain visual focus, and try really hard not to let the student catch you with your eyes closed at any moment.
  7. Be sure to smile as usual and sound peppy (children respond to your energy), be encouraging and try really hard to remember how and what they just did, and avoid saying uuhhhm as it makes you sound distracted.
  8. Never calculate how many hours remain in your workday, since even before MS a 4-hour teaching day is equivalent to working an 8-hour day in an office, but without the breaks.
  9. Question why it is you ever thought that teaching from 2:30pm to 9:00pm, without a pre-teaching nap and without drugs, was a good idea.
  10. Remember (after 2 torturous days) to take some Provigil and easily determine if it really does help or not.

    I'll see you tomorrow. MS fatigue or not, and hopefully coherent.

Sunday, January 6, 2008

'Scientific' Studies are NOT Infallible

Whether you...
  • support democrats or republicans
  • prefer evidence-based medicine to reiki, or reverse
  • read the Washington Post or the New York Times
  • watch CNN or the View
  • believe ads which state '3 out of 5 dentists prefer...'
  • think Bush has been a great president or deserves impeachment
  • have health insurance at work or qualify for Medicaid
  • 'care enough to send the very best'

You should know that...

  • studies can (if so desired) prove or disprove almost any theory which the authors choose
  • who conducts the study is very important to consider when examining the results
  • how results are stated can influence the reader's opinion
  • many, many PR companies exist to conduct studies with the intent of meeting their clients (see KRC Research who works for PhRMA)
    • At KRC Research, our goal is to provide information and insights that can build, drive and enhance communications. Our approach rests on the following principles:
    • Good research is well-planned. That means our research planning process is as rigorous as our research implementation, seeking clarity and consensus on research goals and parameters.
    • Good research is useable. That means our research is designed to provide clear answers to communications questions—what should be communicated, how, and to whom.
    • Good research is understandable. That means we deliver debriefs and reports that are not only thorough and insightful, but clear in meaning and accompanied by clear recommendations.
  • evidence is sometimes a hard thing to prove
Read "Survey Says: Big Pharma's Getting Better" at the WSJ Health Blog

and please read...

"Lancet Speared" at The Doctor is In (opening paragraph below)

Remember the Lancet study? You know, the one which came out days before the 2006 election, reporting that the Iraq war had caused about 655,000 excess civilian deaths — a number about 20 times larger than most other estimates? It was widely reported in the mainstream media, echoed by politicians and pundits who were quick to use it to further damage the Bush administration politically and heighten opposition to an already
unpopular war. It was also widely cited in Europe and the Middle East as evidence of American brutality and callousness in the execution of the war. Because it was published in a prestigious medical journal, those who were skeptical of its findings were left arguing about arcane epidemiological and statistical flaws which virtually guaranteed that no one would listen. The idea that a medical journal would publish a document almost purely political in nature was, of course, pooh-poohed by all the right people.

Read the rest of this post at The Doctor Is In here.

Read the original article "Data Bomb" in the National Journal.

Finally, keep in mind that messages you hear or read are almost always shared with a purpose.

The purpose in this message from me at this time is to encourage you to question reports and clever studies and to think things over for yourself.

Saturday, January 5, 2008

'Sharing Miracles' brought to you by PhRMA

PhRMA is ready to unwrap their 'Sharing Miracles' campaign.

I'll let you in on a little secret. Big Pharma has a tainted reputation.

Oh, you didn't know that? Shocking, isn't it.

Public Affairs TV

Last October, The Hill reported, in Lights, camera, PhRMA, that the drug industry's powerful lobby group had launched their own 30-minute TV show 'Healthcare Campfire with Billy Tauzin' on the local Washington WDCA, a Fox-owned channel and MyNetworkTV affiliate.

The episodes, broadcast as paid advertisements but billed as public affairs programs, borrow the format of talk shows such as NBC’s “Today.” When Tauzin took the helm at PhRMA after retiring from Congress and surviving a bout with cancer, he promised to turn around public opinion about the industry.

“They look like a news story you would see at a local news station,” PhRMA Senior Vice President Ken Johnson said. Johnson had a 20-year career in TV, including stints as a news anchor and director, prior to working for Tauzin on Capitol Hill.

Buffeted by bad press resulting from the recalls of drugs like Vioxx, public bitterness over high drug prices and angry political rhetoric about the industry’s clout in Washington, the drug industry has sought to shift the emphasis to its role in developing medicines to treat serious and deadly diseases.

PhRMA’s desire to take more control over how the drug industry is perceived led to the idea for the TV show.

Tauzin’s interviewees [in addition to PPA spokesman Montel Williams and selected patients] include other well-known figures, such as former White House Press Secretary Tony Snow and motivational speaker Sean Swarner, who survived two fights against cancer and has since scaled the world’s tallest mountains.

The interview segments are interspersed with reports by PhRMA staff on new medicines under development or other healthcare topics.

The idea of 'fake news' stories addressing healthcare, medicine, and pharmaceuticals is disturbing and self-serving at best. Consider the MedLinkTV programs which are going to be shown, whether you like it or not, in the waiting rooms of several New York doctors. Fortunately when you are at home, nobody forces you to watch a 30-minute paid advertisement, promoted as a public affiairs programing, or to buy-into whatever it is they are pushing.

The drug industry’s foray into television is the product of a more than $1 million investment in a state-of-the-art, all-digital, all-high-definition studio and control room that probably rivals most TV stations’. The set is complete with teleprompters and a “green screen,” allowing any image to be digitally added in post-production as a backdrop for interviews.

The group also uses the studio and the booth for media training sessions for its staff and for interviews between broadcasters and PhRMA executives. “There’s such an advantage to being able to go live 24 hours a day, anywhere in the world,” Johnson said.

“Billy’s a natural at this,” Johnson said. On the day of a taping attended by The Hill, Tauzin worked off a teleprompter without having seen the script in advance. There was briefly a problem as crew members tried to position the ex-lawmaker so the flag on the photo of Capitol wasn’t visible (it looked too obviously fake), but Tauzin handled his hosting duties with aplomb.

At the taping, Tauzin showed the Cajun charm that’s one of his trademarks. Greeting Swarner, the mountaineer, before the cameras switched on, Tauzin shook his hand and joked, “Did you take the elevator or did you climb the stairs?”

PhRMA has posted some of the interviews on YouTube, probably to test-drive them a bit and developed a blogspot website,, which is supposedly an "interactive forum for people to relate their own personal stories of hope and survival." There you will find a few video clips of interviews and photo stills obviously from PhRMA's new TV studio.

Public Relations for PhRMA

I first discovered the Sharing Miracles site after looking into Montel Williams, the Partnership for Prescription Assistance, and PhRMA at the beginning of December after Montel threatened a high-school intern in Savannah, Georgia. I noticed the Sharing Miracles link at the bottom of a press release, which was unrelated to the controversial incident.

I wrote about the incident in Is Montel Williams Disturbed by Big Pharma? I have nothing against Montel personally and am glad that he is open about his MS and supports MS research abroad. What bothers me is that he uses, or allows to be used, his persona to represent a PR concoction of PhRMA to shift the drug industry's image into a caring, generous lot.
See PhRMA and PPArx: How much are they really helping patients in need?
The day after I wrote about Montel and had perused the Sharing Miracles site, an interesting thing happened. The traffic on my blog shot up considerably. Somebody from Edelman seemed to read almost everything I had written, followed by visits from several pharmaceutical companies. For those who don't know who Edelman is, this PR firm was responsible for the fakery, undercover, 'grassroots' bloggers who left messages on Wal-Mart websites in 2006.

Now this wasn't the first time I had noticed visits from companies who had briefly been mentioned in a post. After writing about APCO who has worked for PhRMA in PR, somebody within their DC offices using a company computer read my blog. This is monitoring social media, keeping abreast of what is being said about your company or your clients. Indeed, this post will probably draw in various PR monitors.

As an individual, consumer, and potential patient, you should be aware that the internet has become a place where companies want to sell you their wares. Drug companies have been slow to adopt that model and have been clumsy in their attempts, but they are getting better at it.

Just today at the World of DTC Marketing Blog, the use of video on the web as a way to reach your customers is discussed. An idea which is gaining popularity is to offer an opportunity for an individual to share their story or experience with the owners of the website. The last time I visited PPArx's site, I saw that same opportunity but noticed that once you submitted your story, it became theirs to edit without any further agreements necessary from you. Editing someone else's statement or story is a clever way to say what you really want to be said.

I don't know this for certain, mostly because I didn't bother to ask, but I suspect that a number of the individuals featured on the Sharing Miracles blogsite may have been folks who agreed to submit their stories about PPArx. Why do I think this? Well, because almost half of the stories so far reference prescription assistance as part of their personal 'miracle.'

Addendum: Further investigation reveils that Qorvis, a strategic communications/PR firm right here in Northern Virginia, is responsible for the Sharing Miracles website and its' unconvincing fake forum.

Now, I think the term miracle is overused. Apparently, so does blogger Orac over at Respectful Insolence - "Resolved 2008: Let's not use the word 'miracle' to describe unexpected survival." There are very few occurrences which might warrant being called a miracle. I believe my brother's experience 20 years ago falls under this category.

The Miracle in My Family

When my brother was 11 or 12 he loved to dirt bike, that is ride a zippy little motor bike over dirt trails with lots of hills, ditches, and various obstacles. After being caught skipping band class (which was expected of him to participate in because all other family members were musicians), he was forced to make a deal with our parents. In order to continue riding his dirt bike, he had to stay in band....but he could switch to any instrument he really wanted to play. So my brother chose to switch to tuba as, with one instrument at home and one at school, he only needed to transport his mouthpiece to and from school. Very clever decision.

The summer my brother was 13, our father took him to the dirt track area at the nearby lake, maintained and monitored by the park rangers. This was a Saturday morning trip just as common as any other. However, this time the 1968 Volkswagen Bug which was used to haul the bike trailer wouldn't start. Engine trouble. My dad found the ranger's station, but it was locked and unattended. A simple lesson without any real significance it would appear.

The summer my brother was 14, he went dirt biking and brought along our 13 year old cousin who was not an experienced biker. They had a great time riding the tracks and took a second go around. But this time something unexpected happened. My cousin didn't notice that after jumping a particularly large hill and ditch, my brother didn't visibly come up over the other side. Our cousin jumped the same hill, ending up running over my brother who was caught under his bike. My brother was unconscious and wasn't moving. Cousin quickly rode to my dad who was waiting at the car and they retrieved my brother.

Here's fortune #1. Since my dad already knew that the ranger's station would not be manned, he didn't waste time trying to get help (days before cell phones). They brought my brother to the VW Bug while he was unconscious and bleeding out of the mouth.

Fortune #2. The front seat of the VW Bug no longer reclined although my father tried to make it recline to no avail. If he had succeeded in this attempt, the doctors say my brother would have drowned in his own blood before reaching the hospital.

Fortune #3. The surgeon most skilled in the type of surgery necessary happened to be at the hospital and available the moment my father arrived. He has since written case studies about my brother's experience and recovery.

Fortune #4. The type of injuries my brother sustained, detached lung and blown open trachea, usually are accompanied by other severe injuries occurring in a car accident. The surgeons removed a rib, using the muscle to rebuild his trachea/bronchial area, reattached the two lobes of his lung which were detached by the force of the accident, and even used felt patches to hold things together.

Recovery from these types of injuries is not guaranteed. Being placed in ICU for two weeks, it was interesting to be able to see the tire tracks across my brother's body. I think it was over a week before anyone even attempted to clean the dirt out from under his fingernails as the pain was so severe that it might put him into shock. He almost died three times in ICU before beginning his journey of healing.

Fortune #5. He was a strong athletic individual who had tremendous respiratory strength, partically attributed to his experience playing tuba. It takes alot of lung power to play the larger brass instruments especially. His doctors said that this was some of the best therapy his could have had before his accident to prepare him for the difficult recovery road ahead.

Indeed that school year is a big blur to my brother. He missed alot of school, took lots of pain medication, and worked hard at therapy (an expensive Schwinn exercycle rather than attending babysat physical therapy sessions). Then he had to stay out of trouble and not get rough-housed, because if someone accidentally hit him or threw something into his chest, there was the risk of undoing the surgical repairs which really took a long time to truly heal.

Surviving several bouts of pneumonia and other respiratory distress sending him back into the hospital, my brother survived that first year to become a rare survivor. He was asked at least once by his surgeon to visit a fellow high-schooler who had been in a car accident suffering similar injuries to his own. This young girl was scared of dying and needed to know that survival and recovery was possible. She died the next week.

Over the years, my brother's scars have brought him attention. I think he has jokingly claimed that the scar which curves along his back and around to his side (where the rib was removed for access and use of muscle tissue) was from a shark attack. The scar is somewhat jagged and spreads about two inches wide. The scar from his chesttube looks like a bullet wound. I think he has claimed the bullet's still in there. :)

Sharing Miracles on TV and Online

Consider each of the little things which had to occur, even a full year in advance, to prepare the way for my brother's survival. Very few of the stories shared on Sharing Miracles will rival this. You will read about medications to treat chronic illnesses, such as diabetes, high cholesterol, high blood pressure, heart disease, arthritis, depression, and asthma. You will read about clinical trials and cancer treatments. You may even find stories which include references to carpal tunnel syndrome, sleep apnea, allergies, and irritable bowel syndrome.

How do I know this? I read each and every story on the website which has to be pre-approved by PhRMA for inclusion.

At first in September and early October, a few folks left comments on each entry but this must have started to look contrived (which it was.) Now PhRMA wants the public to start commenting and sharing their stories of inspiration and gratitude to the generosity of the Partnership for Prescription Assistance which is not really a program that doles out prescription assistance. Their service is kinda like a phone directory, but one which takes credit for helping anyone who opens it up and conducts a search, regardless of the final outcome or connection to a desired party. As such, PPA now claims to have helped over 5 million individuals find assistance.

So PhRMA has a press release ready to announce that the ‘Sharing Miracles’ Television Program Extends Reach Across America: First Episode Features Former White House Press Secretary Tony Snow (January 7, 2008). I note that the program will now air on WUSA-TV (CBS) in the Washington, DC area, on Sundays at 11:30am-12:00am which happens to be the same timeslot and station where I was witness to the infomercial starring Hugh Downs discussing the Health Secrets book just a few weeks ago.
Beginning in January, Sharing Miracles – a 30-minute public
affairs television program about health care that features compelling and inspirational stories told by patients – will begin airing each Sunday in 17 cities around the country.

Hosted by former Congressman and cancer survivor Billy Tauzin, now the president and CEO of the Pharmaceutical Research and Manufacturers of America (PhRMA), Sharing Miracles is designed to raise awareness about medical advances that improve the quality of people’s lives. Sharing Miracles is produced by PhRMA’s Communications & Public Affairs Department.

The new show will also help to spread the word about the Partnership for Prescription Assistance, a program sponsored by America’s pharmaceutical research companies to help uninsured and underinsured Americans find access to the medicines they need for free or nearly free. The Partnership for Prescription Assistance has already helped nearly 5 million Americans.

The first episode features former White House Press Secretary Tony Snow, who is battling colon cancer. Future programs will highlight two-time cancer survivor and motivational speaker Sean Swarner, who has climbed the tallest mountains on each of the seven continents in memory of cancer victims; “Leave it to Beaver” television star Jerry Mathers, who is fighting diabetes; North Carolina State University Hall of Fame basketball coach and breast cancer patient Kay Yow; syndicated television talk show host Montel Williams, a multiple sclerosis sufferer; Telemundo personality Mayte Prida, a breast cancer survivor; and pop icon and Broadway star Deborah Gibson, who has suffered from depression.

In this month’s show, Snow explains how “sickness stretches your soul, opens your eyes, and introduces you to a world of unimagined grandeur, possibility and joy. You realize what life’s blessings are. Everything that is wonderful becomes more intensely wonderful and all the things that you love, you more intensely love.”

Each show features lively discussions that are informative and that convey messages of hope to patients around the country – and to their family members and friends – who must confront debilitating medical conditions every day.

The show’s corresponding Web site,, is an interactive forum for people to relate their own personal stories of hope and survival. Every patient's battle is unique, but the collective power of shared experiences can offer great help and courage to others who are fighting for their lives.
PhRMA, please give the intelligent citizens of this country a break and stop pouring money into efforts to polish the reputation of profit-driven pharmaceutical companies. Granted there are some companies who are taking risks in research, but the quickly approaching lack of innovative drugs in the overall pipeline is evidence to the need for more research and less marketing/lobbying/public relations.

Do a good job and you will be recognized for it. People are not dumb.