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.

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 on his blog : 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.

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.

'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.

'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, sharingmiracles.com, 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, http://www.sharingmiracles.com/, 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.