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.

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 responsibility...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

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.

Thanks,
Lisa

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