MS Awareness, Blogging Friends, and a little Link Love

Wow!! I've found at least 200 Bloggers with MS out there actively discussing all sorts of things.

Go here to view the massive, awesome list of MS Bloggers.

My hope is to strengthen the connections and bonds throughout the MS blogger community.

Big Insurance Company vs. Mild-Mannered Insurance Agent

So what happens when an insurance agent receives notice of rate increases for Small Business Plans, especially for his own HSA plan, of 32%?

Curious? Read Bill Halper's post Screwing the Pooch over at InsureBlog.

Just goes to show that insurance agents have emotions too.

Joining the MS Party

Well, not being one to always feel compelled to join in on all the fun......

I guess my MS body decided that it wanted a little extra attention.

So late this afternoon, I broke down and called Carol, my MS nurse at the neurology center. We talked about what exactly is going on with that MS body of mine. Consequently, I have an appointment in the morning with the doctor and am preparing myself emotionally to deal with a round of IV steroids.

Nurse Carol pointed out that it has been a little while since we've treated any relapses. In fact, over Christmas this year, I avoided going in because I really did not want to undergo steroids and waited it out. That's how much I really despise the steroids, especially the effect which the taper has on me. But at least now we know that I can't handle prednisone and prefer to use decadron instead.

Uck!!

In the meantime, I'm working on a blogging project which will require some group participation from YOU, dear readers, to be successful. Please stand-by and be prepared to help me spread a bit of our own MS blogger awareness.

A Multiplicity of MiS-Simplification

Remember how March is National MS Education and Awareness Month?

Well The New York Times has jumped onboard with a short series of articles written about multiple sclerosis by their very own "personal health columnist and science news reporter." Ms. Jane E. Brody writes weekly articles for NYT and is considered a leading authority on 'health & nutrition' and 'health & fitness' on the speaking circuit.

"For a recent birthday, Jane Brody received a T-shirt that proclaimed, "Still Perfect-After All These Years!" After she stopped laughing, she began to realize that it really should have said, "Still Trying-After All Those Years!" Indeed, Jane Brody has been trying to be good to her body and to show millions of people around the world how to be good to theirs. She is The New York Times' personal health columnist and is the author of seven popular books: Secrets of Good Health, You Can Fight Cancer and Win, Jane Brody's Nutrition Book, Jane Brody's The New York Times Guide to Personal Health, Jane Brody's Food Book, Jane Brody's Good Food Gourmet, Jane Brody's Good Seafood Book, and Jane Brody's Cold and Flu Fighter. Sought after as a speaker and commentator, Brody lectures frequently and has appeared on hundreds of radio and television shows."

Okay, so Ms. Brody is consider an authority on health issues. But how does that make her an expert on multiple sclerosis? In short, it doesn't. But considering that she is a professional journalist, I would have expected more from today's article in the NYT Health column.

Excerpts from the National Multiple Sclerosis Society website are quoted and emphasized below.

"From Multiple Sclerosis, a Multiplicity of Challenges"
By JANE E. BRODY
Published: March 4, 2008

When it comes to understanding, preventing and treating chronic diseases, multiple sclerosis ranks among the most challenging. The word “multiple” is apt in more ways than one.

Various suggested causes include early-life exposure to certain viruses or toxic agents, geographic and dietary influences, inherent immunological defects and underlying genetic susceptibilities.

While the exact cause of MS is unknown, most researchers believe that the damage to myelin results from an abnormal response by the body’s immune system. Normally, the immune system defends the body against foreign invaders such as viruses or bacteria. In autoimmune diseases, the body attacks its own tissue. It is believed that MS is an autoimmune disease. In the case of MS, myelin is attacked. Scientists do not yet know what triggers the immune system to do this. Most agree that several factors are involved, including: Genetics, Gender, Environmental Triggers [Possibilities include viruses, trauma, and heavy metals (toxicology)]

Dietary influences might cause multiple sclerosis? Really?

MS is highly unpredictable. Rarely are any two patients alike in the presentation, duration and progression of symptoms; even the underlying cause of disability in MS is being reconsidered. And rarely do any two patients respond in the same way to a given therapy, be it medically established or alternative. Trial and error is the name of the game, experts say, because it is often not possible to know in advance what will work best for individual patients.

Symptoms of MS are unpredictable and vary from person to person and from time to time in the same person. For example, one person may experience abnormal fatigue, while another might have severe vision problems. A person with MS could have loss of balance and muscle coordination making walking difficult; another person with MS could have slurred speech, tremors, stiffness, and bladder problems. While some symptoms will come and go over the course of the disease, others may be more lasting.

Although there is still no cure for MS, there are various strategies available to modify the disease course, treat exacerbations, manage symptoms, and improve function and safety. In combination, these treatments enhance the quality of life for people living with MS.

Because MS is so variable from one person to another, and for any one person over time, each individual's treatment needs are best identified in an ongoing collaboration with a knowledgeable physician and other members of the treatment team.

These are the frequent underpinnings of confusion and distrust among those afflicted and their families. They sometimes give rise to claims that the organizations raising large amounts of money to support research and patient services and the scientists studying the disease have no intention of finding a cure, lest it put them out of business. It is a ridiculous notion on its face, since many of those involved in fund-raising and research have watched loved ones suffer and succumb to diseases like MS.

Wait a minute? How does the unpredictible nature and the vast unknowns of living with multiple sclerosis create "distrust among those afflicted and their families." Really?

In my personal experience living with MS and in communicating with others who also live with MS, I'm confident in stating that patients are rarely distrustful of their 'treatment team' and much more likely to be distrustful of the pharmaceutical industry which is continuing to enjoy blockbuster status with their MS disease-modifying drugs.

The failure of the medical establishment to solve mysteries like MS also prompts many patients to seek alternative remedies suggested by friends and relatives or found on the Internet. Many of these remedies are harmless, and some may actually be helpful, at least for a time. But when the remedies keep patients from trying the best that modern medicine can offer — or when they interact negatively with established remedies — the result can be a far more rapid downhill course than might otherwise have occurred.

Alternative medicine includes everything from drugs and diet to food supplements, mental exercises, and lifestyle changes. These therapies come from many different disciplines and traditions.

"...the result can be a far more rapid downhill course than might otherwise have occurred." Really?

Can you hear the pharma guys saying - absolutely, no doubt, without drugs you will go downhill rapidly - mouhaha?

The goal, then, for those considering alternative treatments is to make them complementary to, not competitive with, therapies that have passed muster in well-designed clinical trials.

"...passed muster in well-designed clinical trials."

I wonder if Ms. Brody even looked up the estimated effectiveness of each of the disease-modifying drugs available to us MS patients. I kinda doubt it, primarily due to a particular misspelling found below.

Oh, and for the record, I DO make use of one of the six approved disease-modifying drugs available. So I am NOT anti-drug.

“People have only one brain and one spinal cord, and what everyone with MS should be doing is optimizing treatment options every single day,” said Dr. Allen C. Bowling, a neurologist at the Rocky Mountain MS Center and author of “Complementary and Alternative Medicine and Multiple Sclerosis.” “Every patient should play the chips for which we have the best evidence. They should take advantage of what conventional medicine has to offer along with unconventional medicine,” as long as the latter does not interfere with the former.

Coincidentally, Dr. Bowling's book is now available in a revised 2nd Edition (2007).

Complementary and Alternative Medicine and Multiple Sclerosis, 2nd Edition is completely updated throughout, and reflects the advances in the field since the first edition’s publication in 2001. There is a new chapter on low-dose
Naltrexone and a pivotal section on integrating conventional and alternative medicines.

Treatment Options

Multiple sclerosis is an inflammatory autoimmune disease of the central nervous system in which the body’s own immune system attacks the myelin sheath that insulates nerves in the brain and spinal cord, resulting in irreversible damage to the axons that transmit nervous-system signals. About 400,000 people in the United States are affected, twice as many women as men.

MS is typically diagnosed between ages 20 and 40, but evidence indicates that it starts years before the first symptoms of weakness or disability appear. Even without a cure, many treatments are available — like drugs, physical and occupational therapy, exercise and rest — that can ease symptoms and delay the disease’s progression.

Anyone may develop MS, but there are some patterns.

• Most people with MS are diagnosed between the ages of 20 and 50.
• Twice as many women as men have MS.
• Studies indicate that genetic factors make certain individuals more susceptible than others, but there is no evidence that MS is directly inherited.
• MS occurs more commonly among people with northern European ancestry, but people of African, Asian, and Hispanic backgrounds are not immune.

Approximately 400,000 Americans acknowledge having MS, and every week about 200 people are diagnosed. Worldwide, MS may affect 2.5 million individuals.

In most patients, the disease starts out, and may stay indefinitely, in a relapsing-remitting form that results in gradual progressive disability but is rarely life-threatening. In about 10 percent of patients, the disease is progressive from the outset and life expectancy is reduced.

The goal of therapy is to prevent relapses and the worsening of symptoms. Since symptoms can disappear on their own, large, long-term, scientifically controlled clinical trials are needed to determine what works and what only seems to work initially. Trials are also needed to uncover potentially serious side effects.

Although there is still no cure for MS, there are various strategies available to modify the disease course, treat exacerbations, manage symptoms, and improve function and safety. In combination, these treatments enhance the quality of
life for people living with MS.

"...large, long-term, scientifically controlled clinical trials are needed to determine what works and what only seems to work initially."

Sounds to me like someone is laying the foundation for explaining long, drawn-out, EXPENSIVE clinical trials to study drugs which are already being used to address MS symptoms. Hummm...

Such trials have identified half a dozen substances called immune modulators, five of which have been approved by the Food and Drug Administration (FDA) as disease-modifying agents. These are Avonex, Betaseron, Copaxane, Novantrone and Rebif.

Copaxone is the correct spelling. (I know this because its the drug I use.) But don't forget Tysabri which is disease-modifying drug #6 - oh wait, it gets it's own paragraph down below.

In her book “Multiple Sclerosis: An Essential Guide for the Newly Diagnosed,” Margaret Blackstone, a medical writer and MS patient, describes Avonex, Betaseron and Rebif as interferon-based treatments administered by injection that seek to calm an overactive immune system. Copaxane, also taken by injection, is an antigen that fools the body into thinking it is the protein in myelin. It is meant to protect the myelin from an immunological attack. Novantrone is an immunosuppressive cancer drug used to treat progressive MS.

Oh, I get it - a substantial amount of Ms. Brody's research came from Ms. Blackstone's book which is basically 5 years old, although it is in a 2nd Edition paperback (2007). I read “Multiple Sclerosis: An Essential Guide for the Newly Diagnosed” and found it to provide a useful, but simplistic, foundation for understanding the basics of living with MS.

A sixth drug, Tysabri, a monoclonal antibody that prevents immune cells from entering the brain, is given intravenously every four weeks. Tysabri was removed from the market in 2004 because of serious complications in three patients. It is now back in clinical trials and available through a special program to those who had found it to be the best treatment for their disease, but last week its makers posted a warning to doctors that it has been found to cause serious liver damage in some patients.

"...available through a special program to those who HAD FOUND it to be the best treatment for their disease..."

This implies that only those patients who were part of the earlier trials are using Tysabri. This is not the case and Tysabri is no longer restricted to those patients who have failed each of the other disease-modifying drugs.

Therapy and Alternatives

Up to 20 percent of patients have a relatively mild form of MS and may not need drug treatment, but it is impossible to predict who they are. Dr. Bowling emphasized the importance of not waiting until neurological defects appear, since they cannot be reversed by any known therapy. He also said that therapies should be tailored to the nature of each patient’s disease and the known activity of the various drugs.

It is currently believed that Tysabri may be contributing to the reversal of neurological damage and the regeneration of myelin in some patients.

Ms. Blackstone states it is important for patients to recognize an impending relapse — common indicators are fatigue and “a heightened sense of vulnerability, as if the person can tell something bad is going to happen” — and not try to work through a relapse. “It’s better to rest” and “avoid engaging in strenuous activity,” she suggests.

This is misleading and inaccurate. Fatigue is not simply a "common indicator" for an impending relapse - it is one of the most common (if not THE most common) symptom of MS. But in any case, rest is a good thing for those with MS to regularly make time.

If relapse symptoms warrant, corticosteroids can be used to speed recovery and possibly to delay or prevent another relapse. The other critically important aspect of therapy involves managing symptoms. Depending upon the stage and severity of the disease, symptoms may include fatigue, dizziness, vision changes, spasticity, weakness, tremor, numbness, balance problems, pain, depression, constipation and speech difficulties. In more advanced disease, sexual problems and incontinence are common.

An exacerbation may be mild or may significantly interfere with the individual's daily life. Exacerbations usually last from several days to several weeks, although they may extend into months. It is generally accepted that a short course of corticosteroids will cause an exacerbation to be shorter and/or less severe.

Measures may be taken to reduce disability from these symptoms, like physical, occupational and speech therapy and psychotherapy; avoiding heat; getting adequate rest; and learning to listen to one’s limitations.

Disability does not come from MS symptoms. It comes from
disease-activity and further damage. And by the way, sexual problems is listed as one of the most common MS symptoms on the NMSS website.

At one point or another, most MS patients also seek out, and often benefit from, complementary and alternative medicine, like acupuncture, dietary supplements, biofeedback, meditation, guided imagery, tai chi, cooling therapy, yoga, therapeutic touch and electromagnetic therapy. In his book, Dr. Bowling describes what is known about each of these possible adjuncts to medically established treatments, some of which can be counterproductive or negate the benefits of medication.

It's great that The New York Times desires to address the unique issues related to MS, especially during this special month. But this article left a strange taste in my mouth. oops - maybe I've got a relapse coming on? Just kidding and knock on wood.

This is the first of two columns on multiple sclerosis. Next week: Could a special diet for MS patients be worth trying?

So next week we get to benefit from Ms. Brody's vast knowledge and research of multiple sclerosis. I'll be curious to see what she writes next.

So stay tuned and I'll let you know when I know.

For clarification, the excerpts in italics are from the National Multiple Sclerosis Association's website. The bold quotes are from the NYT article. And the rest comes directly from me.

In conclusion, I basically expected more from The New York Times. Too bad.

Stuff that makes life easier....or not.

Here's a new random feature at Brass and Ivory

Stuff that makes life easier....or not.

Submitted by Diane:

Not helpful: Suction cup finger nail clipper. Suction cup it WHERE? Suction doesn't stay anyway. Blades are dull. You still need strength in one hand. Ordered from an OT's "private catalog," but they all look the same to me. I'd love to hear if anybody knows a way for me to keep my fast growing, hard nails (yeah-yeah, lucky me) trimmed, neither of my hands are strong and no fingers are 100%, can't control scissors etc.

I don't have an answer for Diane. Maybe you , dear reader, can make a suggestion on how to keep those beautiful finger nails neat and tidy.

Submitted by Carole:

Revlon makes very good tweezers called Expert Grip. They have padded handles that are easy to grip and use. I bought a pair on Ebay for $3.00 I don't know how much they are retail You can see them here: Revlon Beautytools. They really work for me.

Carole also wrote about things which make cooking easier on her blog. Go check it out.

If you have any tips on helpful, or not so helpful, items out there, please send me your recommendations via email.

What difference does $165,776,833 make?

Did you know that in 2007, the pharmaceutical and health care products industries spent $165,776,833 on Congressional lobbying activities?


PhRMA: $22.7 million for political lobbying in 2007
By Lynne Taylor
25 February 2008

The Pharmaceutical Research and Manufacturers of America (PhRMA) spent a total of $22,733,400 last year on Congressional lobbying activities, an increase of around 25% on 2006’s figure, according to disclosure forms posted with Congressional public records services and publicised by the Center for Responsive Politics (CRP).

PhRMA spent more on lobbying last year than any other industry group, ahead of the US Chamber of Commerce, which was next with a spend of $21,160,000. Individual drugmakers making it into last year’s top 20 for spending on lobbying were Roche - $11,352,038; Amgen - $9,080,000; Sanofi-Aventis - $7,770,000; and Pfizer - $7,220,000.

PhRMA spent $12 million during the second half of 2007 alone, the Center also reports. The industry group has said that most of the big rise in spending last year was to fund efforts to get Congress to reauthorise the State Children’s Health Insurance Program. However, the group also lobbied successfully against other legislative proposals including: permitting imports of cheaper prescription medicines from Canada and elsewhere; moves to empower the federal government to negotiate prices with drugmakers for medicines supplied to Medicare enrollees; and restrictions on direct-to-consumer advertising contained within the Food and Drug Administration reform bill, which became law last September.

In total, the pharmaceutical and health care products industries spent $165,776,833 on lobbying activities last year, according to the records, which are filed with the Secretary of the Senate and the Clerk of the House. Among the industry’s other big spenders were: AstraZeneca Pharmaceuticals - $4,080,000 plus $280,000 from an affiliate; Abbott Laboratories, at $2,380,000 plus a further $280,000 spent by its Ross Products affiliate; Bayer Corp $3,868,550; the Biotechnology Industry Organization (BIO) - $3,600,000; Boehringer Ingelheim - $4,285,164; Bristol-Myers Squibb -$2,840,000 plus $340,000 from its Convatec affiliate; Eli Lilly - $1,960,000; GlaxoSmithKline - $3,620,000; Johnson & Johnson - $3,820,000 plus $320,000 from an affiliate company; The Medicines Company - $2,510,000; Merck & Co - $2,300,000 plus $1,020,000 from Merck Serono; Novartis - $3,540,000 plus $465,000 from affiliates; Schering-Plough - $2,160,000; Teva -$2,140,000; and Wyeth $1,820,000 plus $520,000 from an affiliate.

Presidential election donations so far
Meantime, the industry’s contributions to candidates for this year’s US presidential election currently stand at $9,123,768, with 51% going to the Democrats and 49% to the Republicans, says the latest data from the Center. Industry contributions for the whole of 2006’s Presidential election cycle totalled $19,598,807, of which 31% went to Democrats and 67% to the Republicans, it adds.

By Lynne Taylor
Source: PharmaTimes


I previously wrote about pharmaceutical lobbying expenditures during the first half of 2007.