Drug Company Kickbacks - Dollars for Docs

We depend on the expertise and integrity of doctors to do what is best for our health. When my now-ex neurologist put me on the drug Tysabri and told me the risks were manageable, I trusted him.

Previous entries in this blog show how my ex neurologist and the drugs he prescribed eventually lost my trust. I got tired of getting more and more disabled, and I got tired of drug company sales reps getting priority over me in the MS clinic waiting room. Only fear, anger, good fortune and good luck led me to Dr. Burt and HSCT to get me off the cash cow drug treadmill that had me stumbling toward a wheelchair.

Now, finally, the Affordable Care Act will require drug companies to report payments made to doctors. Part of what drove that legislation was investigative reporting and outcry from patients. The nonprofit organization Propublica has already disseminated much information. Large pharmaceutical companies such as Pfizer and Novartis began reporting their payments to doctors as a condition of settling federal whistleblower lawsuits. But the world's biggest MS drug company, Biogen Idec, has not reported anything yet.  As of tomorrow, they will be required to by law to begin reporting that money.  It's about damn time!  The Probublica article below includes a search engine to check on the payments particular doctors receive from drug companies.  It won't be complete for awhile, but it's a start that should get better over time. You owe it to yourself and your loved ones to check your health professional against this database.

What We’ve Learned From Four Years of Diving Into Dollars for Docs

Payments from pharmaceutical companies touch hundreds of thousands of doctors. 

The information is being made public under a provision of the 2010 Affordable Care Act. The law mandates disclosure of payments to doctors, dentists, chiropractors, podiatrists and optometrists for things like promotional speaking, consulting, meals, educational items and research.

It's not quite clear what the data will show — in part because the first batch will be incomplete, covering spending for only a few months at the end of 2013 — but we at ProPublica have some good guesses. That's because we have been detailing relationships between doctors and the pharmaceutical industry for the past four years as part of our Dollars for Docs project.

We've aggregated information from the websites of some large drug companies, which publish their payments as a condition of settling federal whistle-blower lawsuits alleging improper marketing or kickbacks. Today, in cooperation with the website Pharmashine, we've added data for 2013, which now covers 17 drug companies accounting for half of United States drug sales that year. (You can look up your doctor using our easy search tool.

http://www.propublica.org/article/what-weve-learned-from-four-years-of-diving-into-dollars-for-docs

Leap of Faith on a Pilates Jump Board

I was jumping today! After not jumping for two years, it was exhilarating, but also a bit terrifying on the landing. Would I come down wrong and shatter an ankle? I didn't trust my MS-ravaged  body anymore. But I trusted my Pilates teacher, Kim, to know what she was doing.  It was a leap or faith, followed by another leap, and another. My ankles are still fine. Thank you Kim!

Technically, this was assisted jumping on a Pilates jump board machine. It's simulated jumping on a horizontal plane, not real jumping through space like in a pickup basketball game or tae kwon do class. This isn't about being like Michael Jordon. It's about getting back to being able to do small jumps, like hopping over a puddle or doing a silly dance; stuff that most able-bodied people take for granted.

A Pilates jump board is a sliding contraption attached to springs that provide varying levels of resistance. If you've never been in a Pilates studio, perhaps the closest thing to a jump board you've seen is the Chuck Norris Total Gym advertised on late-night infomercials. The difference is that a jump board uses springs for resistance rather than pulleys and gravity. And a jump board is used exclusively for development of the legs and core, areas where I am in great need of rehabilitation after my wheelchair-bound MS attack in 2013.

Not everyone at New Movement Pilates is doing rehab.  Most are doing it for a workout that improves posture and body function. Ballet dancers and Pilates instructors like Kim are jump board masters, able to make using the thing look like a graceful performance event. Though I'll never wear a leotard and a dance belt, if this helps me walk better, that's beautiful enough for me.

Life is Good Without MS

I used to wake up and ask "why me?" Why was I so unlucky to get multiple sclerosis?  Now I ask a second question—why was I so astronomically very lucky to be one of the very few MS patients in the world to be treated successfully with HSCT by the world's leading immunologist, Dr. Richard Burt?  On the first question, medical experts can speculate that me getting MS was a combination of genetic susceptibility and exposure to unknown environmental factors. On #2, how did I get to do HSCT, a review of this blog back to October 2013 shows a combination of good fortune, luck, determination, and perhaps being blessed for no reason I can currently understand.

Getting MS is like winning the lottery in reverse. Most people will never get MS. Out of a U.S. population of just over 300 million, approximately 300,000 people are estimated to have MS. That's just 0.1 percent, making MS rare enough to be listed by the National Organization for Rare Diseases (NORD). MS is considered to be manageable, but have no cure. Symptoms vary from mild inconvenience, all the way to severe disability and death.  Current statistics show that people with MS often live just a long as the general population. While that is a small bit of good news for the afflicted, the stats also show that the MSer population as a whole lives 93 percent as long as those without the disease. I felt this was a necessary number to consider when weighing the risk of treatment to stop my MS with HSCT.

It's important to note that MS is NOT usually a death sentence. In fact, many successful people, both unknown and famous live with MS.  I bring up MS fatalities not to be dour and depressing, but to point out that some MS cases like mine warrant special consideration for alternative treatments such as HSCT. HSCT stopped my MS when no standard of care MS drugs could. HSCT got me out of a wheelchair and I have little doubt that HSCT saved my life. And though Dr. Burt won't call HSCT a cure for MS (he says remission), many of his patients, including me, feel we have been cured. The autoimmune attacks have been halted, we are off MS drugs, and we are now healing rather than getting worse.

Though the medical establishment positions MS as a non life-threatening disease, it does kill people directly and indirectly. A partial list of celebrities who have died from MS includes Richard Pryor, who joked from his wheelchair that MS stood for "more shit." Annette Funicello, the cutest Mouseketeer, also died from the disease, though she suffered quietly with it and said little for many years. A partial list of other celebrities who died from MS can be found here.

Though I've gotten to know many people who are living successful lives with MS, I also have known three people who have died from MS. I've also spent enough time in an MS clinic waiting room over the years to see patients with rapidly worsening conditions. The drugs were not helping them, just as they eventually stopped helping me and began making me worse.

My reasons for choosing HSCT are as follows:

1.) I was getting rapidly worse despite MS drugs. The most recent of which, Tysabri, threatened to kill me with the deadly brain infection PML, then gave me a crippling and life-threatening MS rebound attack when my neurologist attempted to transition me to another drug.

2.) HSCT is the only known treatment shown to stop MS. All current drugs, at best, merely reduce relapse frequency and slow disease progression.

3.) I was miserable from MS attacks, in pain and non-functional. MS attacks on my brainstem were aggressive and dangerous. In comparison, fatality risk of approximately 1 percent with HSCT seemed worth  it for an 85 percent chance of success in stopping the disease.

4.) Dr. Burt, one of the world's leading immunologist and the foremost expert on using HSCT to treat autoimmune diseases, accepted me as a candidate for treatment because he believed I was very likely to be helped by the procedure. Many other MS patients try to get into the program but are turned away because their MS is too far advanced. If I had waited, it was likely that I would become secondary progressive with a significantly reduced chance of successful recovery.

5.) Though my health insurance company and my now ex neurologist told me HSCT was unproven and too risky, my own research had shown me otherwise. Their standard of care had failed me and I was ready to try something new.

Now seven months after HSCT, I no longer use a wheelchair, MRI scans show my MS has been totally stopped. My nerves are healing, and an exercise program that includes specialized physical therapy and Pilates is helping me walk again.  The recovery is still a bit up and down, but the trend is toward improvement. On my best days I walk nearly a mile. One year ago, such a physical feat was only a fantasy. After a lot of bad breaks dealt by MS, it's looking like my luck has changed for the better.

MS Caused by a Virus?

Dr. Burt prescribes the antiviral drug acyclovir to MS patients he treats with chemo/HSCT. The reason he told me is that the antiviral helps prevent painful shingles outbreaks, which have tended to occur in patients after chemo.  Shingles is caused by the same herpes virus that causes chickenpox. This virus remains dormant in the body after a child gets over chickenpox, and often comes back as shingles in older adults.

Some doctors prescribe a different antiviral, amantadine, to reduce fatigue in MS patients. Whether the drug suppresses a particular virus, or a complex of viruses related to fatigue in MSers, is unknown. The Epstein-Barr virus, which causes mononucleosis, has also been correlated with MS incidence and fatigue. The MS Society has a good summary of the spotty research on viruses and MS here.

Now new research at Barts and the London, provides further evidence that viruses may play a role in MS.  The paper suggests that T cells responding to specific herpes and Epstein-Barr viruses are enriched in the spinal fluid of MSers .

The paper further suggest that treating viruses, and/or T cell memory of the viruses, may play an important role in stopping MS progression.  

Yes, I'm remembering to take my acyclovir.  : )

Immune system T cell

Self-tolerant immunity is a beautiful thing.

B cells, T cells, Antibodies, Whaaat?!!? The immune system is complicated.  The more I learn about it, the less surprised I am that mine got confused and started attacking my central nervous system. In fact, I'm amazed that this Rube Goldberg system of immune cell checks and balances works at all for anybody. And I'm so grateful that Dr. Burt figured out how to reset mine with chemo and HSCT to stop my MS.

If you want to learn the basics of immune cells, or just see some cool graphics, check out the Biolegend website. The company sells some of the test lab tools that are key to immunology research. Play around with their interactive graphic and blow your mind.

Maybe the site will inspire a young genius or two to become a next-generation immunologist. There are more than 80 different autoimmune disorders where the immune system is no longer self-tolerant. A lot of people need help, and the trend seems to be that there will be many more autoimmune diseases to come.


http://www.biolegend.com/basic_immunology

The National Institute of Health (NIH) estimates up to 23.5 million Americans* have an autoimmune disease (AD). In comparison, cancer affects up to 9 million and heart disease up to 22 million.
• NIH estimates annual direct health care costs for AD to be in the range of $100 billion (source: NIH presentation by Dr. Fauci, NIAID). In comparison, cancers costs are $57 billion (source: NIH,ACS), and heart and stroke costs are $200 billion (source: NIH, AHA).
• NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).
• The NIH Autoimmune Diseases Research Plan states; “Research discoveries of the last decade have made autoimmune research one of the most promising areas of new discovery.”
• According to the Department of Health and Human Services’ Office of Women’s Health, autoimmune disease and disorders ranked #1 in a top ten list of most popular health topics requested by callers to the National Women’s Health Information Center.

* The American Autoimmune Related Disease Association (AARDA) says that 50 million Americans suffer from autoimmune disease. The NIH numbers only include 24 diseases for which good epidemiology studies are available.

An autoimmune disorder may affect one or more organ or tissue types. Areas often affected by autoimmune disorders include:

• Blood vessels
• Connective tissues
• Endocrine glands such as the thyroid or pancreas
• Joints
• Muscles
• Red blood cells
• Skin

A person may have more than one autoimmune disorder at the same time. Common autoimmune disorders include:

• Addison's disease
• Celiac disease - sprue (gluten-sensitive enteropathy)
• Dermatomyositis
• Graves' disease
• Hashimoto's thyroiditis
• Multiple sclerosis
• Myasthenia gravis
• Pernicious anemia
• Reactive arthritis
• Rheumatoid arthritis
• Sjogren syndrome
• Systemic lupus erythematosus
• Type I diabetes