Look Beyond the Headlines

Headlines - Articles

Research - Abstracts

Justification - Products

Pharma - Non-Profits

Advertising - Marketing

All too often nowadays, any item from the list above can be easily confused for another.  Take one recent headline from last week....

Approximately One-Third of MS Patients Experiencing Relapses Do Not Adequately Respond to Traditional Corticosteroid Therapy, According to New Data Presented at the 5th Joint Congress of the European and Americas Committees for Treatment and Research in Multiple Sclerosis.  Survey conducted by the North American Research Committee on Multiple Sclerosis (NARCOMS)-- 

Funding for the survey was provided by Questcor Pharmaceuticals and the abstract was presented at ECTRIMS by an employee of Questcor.  Questcor happens to have a product for which they are working hard to promote and increase prescriptions as an alternative treatment for MS relapses. 

I'd like to know who wrote the questions for the survey, because responses can be directly affected by how a question is asked.

In anticipation of their 3rd quarter financials, an article in late September discussed Questcor's "recent market value of about $1.7 billion."

"Questcor said Wednesday that it expected new paid prescriptions for Acthar in treating multiple sclerosis exacerbations to exceed 850 in the current quarter. Acthar costs $40,000 to $50,000 a prescription for that usage. Questcor said the prescription number was up 13% from the second quarter and up 160% from a year ago."

Questcor finally did release the results of their 3rd quarter yesterday.

"Questcor said the number of paid prescriptions for the multiple sclerosis treatment leaped 174 percent from the prior year, to 886 from 323. Use of the treatment for other conditions, including nephrotic syndrome and infantile spasms also rose.

`We believe Acthar has the potential to benefit many more MS, NS, IS and possibly lupus patients in the future," said President and CEO Don Bailey."

This MS relapse treatment costs as much as two rounds of Rituxan infusions.  It costs as much as a year's worth of MS disease-modifying therapy.  This usage alone will bring in more than a billion dollars to this little one-drug company for a drug which has been around since the 1950's.  Amazing.

But to be fair, I'd like to hear from an objective physician about the difference between this treatment and the more traditional round of Solumedrol infusions (which costs my insurance company approximately $600 in total).   There was to be a local presentation on Saturday, but it has been postponed.  Maybe not enough people were interested.  If it is rescheduled, I'll let you know so that we can prepare questions for the Q&A session.

~~~~~~~~

Unless you think that this headline is an unusual example, believe me when I say that it is not.  Other recent headlines have focused on a survey conducted by the NMSS this summer on the impact walking difficulties have in those living with MS.  It is being used by Acorda Therapeutics to boost articles related to their main product known as the "MS walking drug."

Smart business approach.  Sure.
Easy to miss the connection between the two - survey and product promotion - absolutely.
Should patients look beyond the headlines, dig deeper into the story, to find those connections?  You betcha.

Hand-Written Orders Required

As an empowered patient, I keep track of all tests and results. I recommend to others that they do the same. If you get blood tests done, request copies. If you have an MRI, get copies of the radiologist's report and a computer disc of all pictures. These are just the beginning of taking care of your health. The next step is understanding what is found in these test results.

In my area, getting copies of MRI results is super easy. The MRI technician asks you to wait a moment when the tests are done. You wait for 5 minutes or so and a CD is brought to you with the images taken during the test and the software needed to view the images. You are expected to keep this CD for your records and to take it with you to your next neurologist visit. In a couple of days, you can walk up to the front desk of the same MRI center and request a copy of the radiologist report. (You probably can probably call to get a copy mailed to you, but this is faster in my case.)

Ever since I started on this journey of living with chronic illness, I've learned the importance of tracking something as simple as your blood test results. It was from copies of previous blood tests dating back to the very beginning of early RA symptoms in my hands (when things were still very vague and I knew that 'something just isn't right') that my rheumatologist informed me that my undiagnosed RA had dated back a few years. My primary doctor didn't recognize the very subtle pattern found in those blood tests.

When I get first diagnosed with MS, it was easy to get copies of blood tests. All I had to do was ask that a copy be sent to me when I was at the local lab for the blood draw. I would always get a copy in about a week.

A couple of years ago was the first time that the technician at the local Quest lab would not add my to the list of recipients for the tests. She eventually did call my rheumy's office which was in the same building to ask if she (my doctor) gave permission for me (the patient) to get copies of the tests. Something had changed in the state of Virginia. Patients no longer could have easy access to records.

So since that one trip to the lab, I made sure to ask my rheumatologist to add me on the courtesy copy list which always includes my neurologist and primary care doctor. Sharing test results between doctors helps to cut down on the number of blood draws I undergo during the year and it keeps everybody in the loop.

Requesting this addition to the standing order I get twice a year for routine blood work takes an extra moment during the appointment and takes a tiny bit of my attention away from other things which might be important to discuss. But that is one cost of staying empowered.

A few weeks ago, I had a neurology appointment. It was time for routine blood tests and my standing order had expired. So my nurse practitioner wrote an order which would cover her interests and those of my rheumy. She listed those other doctors as recipients of the results. She also indicated on the order that I (the patient) should also receive a copy.

The neurology clinic is so forward thinking that they had added a statement and box which could be marked to indicate that records be sent to the patient. My nurse practitioner not only put an X in the box, she circled the entire statement so that it would not be missed at the lab when the order was actually processed.

That same week I met with a new doctor, a cardiologist. This doctor had a couple of other tests which she would like to have. So she added her additional requests to the order and added her name to the list of recipients. This was not a problem, but now there are four doctors to receive the results in addition to me, the patient.

My follow-up appointment with the cardiologist is Wednesday. I have been having irregular heartbeats and wore a Holter monitor for a day to record my heart activity. The answer to the irregular heartbeats could be something as simple as a magnesium deficiency. I would know if this were likely, IF I had received my test results.

But...I will be going into this appointment without knowing the test results. Quest did not send me a copy. I am not happy about that.

I called Quest to find out if there had been a problem processing my results. What I found out really makes me angry. Apparently as the technician was adding doctors to receive results (and she had already added me first as I insisted), I (the patient) was bumped off the list. There is only room on the request form for three additional recipients for the records.

Only room for three. That was the first problem. The next problem is that I was told in the state of Virginia that the request for copies to the patient must be hand-written on the order. Pre-typed statements on the order form are not accepted. That is ridiculous in my book. If my doctor wants to make it easier for the patient to be empowered and save time during the office visit when filling out orders, why can't it be accepted?

At the risk of sounding calm about it, I was not a happy camper when I was told this tidbit of information. My neuro's order forms are geared toward efficiency and effectiveness of use. My rheumy's order forms are not equally up-to-date with the latest philosophy in participatory medicine.

But the rheumatologist's orders are accepted when she cc's the patient. My neurologist's orders are not accepted. There is something wrong with this picture. It's like a step backward and "regulations" are putting up unnecessary barriers to information.

So what's the solution? For me, I will have to ask the cardiologist's office to print me a copy of the blood test results. I don't think that it should be a problem (I hope) especially since as my first appointment, I brought my spreadsheet of all my blood test results dating back to 2003.

I keep this spreadsheet updated in my computer every 2-3 three months. I can see trends which correlate to different changes in health, both temporary and permanent. I can see that Tamiflu caused my liver enzymes to shoot up through the roof but that methotrexate does not. I can see how different lymphocytes are affected during an MS exacerbation. Basically I can spot when things start to look unusual.

But according to the state of Virginia, I should not have access to my records unless: 1) my doctor gives permission, and 2) my doctor HAND WRITES the permission on the lab order.

HAND WRITES the request. How silly is that?

Please Welcome MS Blogs to the Community

Along My Way

Dave's ActiveMSers Blog (new blog location)

Thanks: Management

Odd Parent

MS Bloggen - En blog om at leve med Multipel Sklerose (in Danish)

Erin Jennifer Griffin

Quiet Monsters

National MS Society

Gratitude Friday

I've been feeling a bit blue this week, so I decided to try to do something about it.  First I wrote a scathing post about abstracts, surveys, companies, and marketing.  But then I decided to let it sit a little while before hitting the publish button.

Then I was thinking about how sore my muscles are today.  But it is a good thing.  We had a substitute teacher in yoga class yesterday.  I loved her!  This class resembled previous yoga classes I've participated in before.  Everything we did made sense and I got a really good workout with some great stretching and strengthening.  I want her to come back soon.

Cat #1

And finally, one of my "little guys" (aka Pippin the cat) wanted my attention.  He actually used his tiny little meow to say hello.  So cute.

All I had to do was pick up the cat comb and he was all over me.  I don't think that there's any salt left on my hands and arms as he likes to lick while he's being brushed.

Cat #2

So why is it that Autumn has arrived, the weather is colder, but yet the cats are shedding like crazy.  You can't pet them without getting fur all over your hands or face, or tickling your nose.

Colder weather is supposed to encourage thicker coats of fur, right?


But then again, I gotta remember - this is a house whose residents don't always follow the "rules."  :-)

MS Risk and Teenage Shift Workers

"Shift Work at Young Age is Associated with Increased Risk for Multiple Sclerosis”

That’s the title of a report which will be published in the November Annals of Neurology.  Researchers analyzed information derived from two epidemiological studies in Sweden, examining environmental and genetic risk factors for multiple sclerosis.

The first study, Epidemiological Investigation of Multiple Sclerosis (EIMS), involved completed questionnaires from 1343 MS patients and 2900 case controls.  Mean age for disease onset was 33.4 years and mean time to diagnosis was 1.0 year.  The second study, Genes and Environment in Multiple Sclerosis (GEMS), comprised 5129 cases with MS and 4509 matched controls.  Mean age for disease onset was 33.0 years.  These studies did not have any overlap in participants.

Sleep deprivation is also associated with an increase in pro-inflammatory cytokines such as interleukin (IL)-6 and tumor necrosis factor-alpha (TNF-a).  IL-6 induces the development of Th17 cells which have been shown to play a crucial role in the development of autoimmune diseases such as rheumatoid arthritis and experimental autoimmune encephalomyelitis.  Also, significantly increased levels of IL-17 have been seen in MS patients as compared to healthy individuals.  

What was seen in the data is evidence that the longer duration of shift work a person experienced before the age of 20 demonstrated a greater increase in MS risk.  Researchers stratified the risk between less than three years and three years or more.  In EIMS, the odds for developing MS increased to 2:1 in persons who worked shifts for more than three years.  In GEMS, the corresponding odds were 2.1:1, which is noticeably different than the 1.1:1 odds ratio for less than three years of shift work before the age of 20 found in the GEMS study.

Read this post in its entirety:

Teenagers Working Late Nights May Have Increased Risk of Developing MS

Horns in the Air

Spontaneous concert of duets by Jacques-Francois Gallay played
on natural horns, on a plane, in Brazil.

 Gallay and the large volume of music he composed for horn were the subject of my dissertation.  This is an example of the type of horn I play on occasion.

(h/t Bruce at Horn Matters)