Barack Obama’s recess appointment of Dr. Donald Berwick as head of the Center for Medicare and Medicaid Services (CMS) marks a new low in his destructive presidency, and that is saying something!

After forcing the Orwellian Patient Protection and Affordable Care Act (PPACA) onto an unwilling populace and through a reluctant Congress, he installs an elitist who admits to being “in love” with Britain’s National Health Service into a position of incredible power without so much as a hearing.

This is an affront to the American people, and to Constitutional government. It also completely confirms our predictions regarding the true nature of ObamaCare. It will be modeled after the NHS with rigid budgets, income redistribution, command-and-control structure, “death panels” (The National Institute for Clinical Excellence, or NICE), and a weighty bureaucracy. Ironically, this comes at a time when the British are struggling with the bureaucratic morass of the NHS authority.

How does Dr. Berwick hope to control the billions of decisions made by practicing physicians every day? Daniel Henniger, in his Wonder Land column, has some revealing, and frightening, quotations:

"The unaided human mind, and the acts of the individual, cannot assure excellence. Health care is a system, and its performance is a systemic property."

"I would place a commitment to excellence—standardization to the best-known method—above clinician autonomy as a rule for care."

"Young doctors and nurses should emerge from training understanding the values of standardization and the risks of too great an emphasis on individual autonomy."

The mechanisms for this are already in place. A central board, our version of the NICE, was already legislated into existence by the stimulus bill. Payment-for-performance (P4P) is already being used in certain areas to enforce compliance with clinical practice guidelines. Language in PPACA gives the secretary of Health and Human Services (which oversees CMS) authority to bar from participation doctors who do not comply with certain quality standards, i.e. conform to guidelines. Physicians are currently being bribed by CMS to purchase electronic health records, which will be used to insert algorithms to “guide” the physician to the “correct” plan of care. Where do practice guidelines come from?

Practice guidelines are a recent fad and have proliferated to cover virtually all areas of medicine. They are funded either by government, insurance and pharmaceutical cartels, or medical organizations such as the American Medical Association. While billed as “evidence-based,” for the most part they are consensus opinions of a panel of “experts.” These experts invariably have extensive financial ties to industry. This may explain why practice guidelines are almost always biased towards greater levels of drug treatment targeting ever-wider patient populations.

Guidelines are sluggishly produced and often superseded by new information when finally published. As an example, tight control of blood sugar has been pushed by guidelines for Type II diabetes for years. Four studies published in 2008 showed either no benefit or increased death rates with this approach. Guidelines discourage innovative thinking and encourage the “one-size-fits-all” approach so loved by Dr. Berwick. If practice guidelines were in existence in the 18th century, bloodletting might still be the standard of care!

The problem with trying to implement guidelines as public policy is that we are all unique individuals and individual differences really do matter. Only a personal physician has the local knowledge of the patient that permits tailoring of treatment for maximum benefit at lowest risk.

Central control of medical care, which is the predictable endpoint of centralized payment for care, will wreak havoc on the medical profession and harm thousands, if not millions, of patients. Since PPACA effectively nationalizes the private health insurance industry, the Berwick appointment affects everyone.

Patients need to seize control of their medical destinies by setting up Health Savings Accounts and paying for their medical care themselves. Seniors should strongly consider opting out of Medicare Part B. For doctors, it has never been more urgent to sign the Physicians’ Declaration of Independence and sever third party relationships. The future of an independent medical profession is at stake.

Trace, Trim and Walk Away!

It’s easy to assume that medical professionals are the ones in the driver’s seat when it comes to healthcare management.  However, patients are in a unique position to take control over their plans.  Here are some ways individuals can be pro-active:

• Write questions and concerns down prior to medical office visits and make sure that all points are reviewed.  Writing down the answers to questions is just as important as writing down the questions.
   
• Don’t be shy.  Medical professionals are talented, but they aren’t mind readers. Often times, they are relying on feedback from the patient.  
   
• Specify.  If something hurts, describe the pain and try to pinpoint exactly where it’s felt.
   
• Track issues.  For example, the swelling of a residual limb may be connected to medication, diet, weather, or activities.  
   
• Take responsibility.  Some things may be out of a patient’s control, but many lifestyle choices have a direct affect on health and quality of life.
   
• Confront issues.  If a medical professional isn’t using his or her ‘listening ears’, a reality check may be in order.  Second opinions are always an option, but medical professionals should always be given a realistic opportunity to rectify issues.
•   
• Be compliant.  Don’t missva medical appointment if you don’t have a good reason to do so.  Take medical advice seriously.
   
• Remember you are a person, not a number.  It’s easy for some medical professionals to forget they are treating the person, not the body part.  A bad personality clash between a patient and a medical professional can mean it’s time to move on.  On the flip side, some technically brilliant medical professionals just have lousy bedside manners.  If the priority is surgical brilliance, not informal chit-chat, maybe the bedside manners can be overlooked.  That’s a personal call that only the patient can make.

hanks to a small cuff around her leg, Bonnie Bell can walk in the mall without falling. In fact, Bell, who was diagnosed with multiple sclerosis in 1998, has not so much as tripped since she began using the Ness L300 five months ago.

Almost two-thirds of all people living with MS report that trouble walking takes the biggest toll on their quality of life1 and one of the leading causes of difficulty walking is foot drop, a weakness or paralysis of the muscles that lift the front of the foot. People with foot drop often drag their foot and hike their hip to take a step, causing long-term damage to muscles and even bones and making walking miserable.

A recent advance in the field of neurostimulation is offering a new approach. Functional electrical stimulation or FES technology uses low levels of electrical current to stimulate nerves in the extremi- ties. My patients often say that FES therapies create a light tingling sensation as electrical impulses activate specific muscles. FES is not a cure for the damage caused by
see you for only a few minutes in a setting that doesn’t reflect your typical daily activities. For some people, foot drop is only present after sustained exertion. Let your provider know about all the dif- ficulties you experience when walking.

The foot drop diagnosis
Before investigating a FES device, it is critical to obtain an accurate diagnosis. Walking problems may be caused by other conditions.
In order to determine if foot drop is present, make sure your health-care team is aware of all the mobility challenges you face. A busy physician may see you for only a few minutes in a setting that doesn’t reflect your typical daily activities. For some people, foot drop is only present after sustained exertion. Let your provider know about all the dif- ficulties you experience when walking.

Therapeutic options
In the past, the treatment for foot drop was a rigid plastic ankle-foot orthosis (AFO) worn around the leg. Many different varieties of AFO are available and they are effective, but patients using them may experience discomfort, trouble getting the brace into a shoe, and even muscle atrophy as the AFO limits motion.

A new alternative is an FES device, which can be used independently after the patient has worked with a physical therapist. At present there are two devices on the market. Both are FDA approved, and both stimulate the peroneal nerve which, in turn, signals under-active muscles in the leg to raise the foot at the appropriate time during the step cycle.

NESS L300
 The NESS L300TM Foot Drop System is worn in two parts—a small transmitter in the shoe and a device fitted below the knee. For more info: bioness.com.

WalkAide
 The WalkAide consists of a battery-operated, single- channel electrical stimulator, two electrodes and electrode leads. For more info: walkaide.com.

A case in point
James has the typical mobility challenges that I frequently see in my MS patients at Shepherd. His work requires business trips with a lot of walking, especially at airports. At the end of his working day, James would drag the toes on his right foot and often fell. He was prescribed an ankle-foot orthosis, but rarely used it because he said it was uncomfortable.
At Shepherd, James was given an FES device for the foot drop on his right side. James reported that he did not fatigue as easily, was moving faster and had not fallen since using the device.

Insurance coverage
To date, neither the WalkAide nor the NESS L300 is covered by Medicare except under certain diag- nostic codes for incomplete spinal cord injury. Some private insurance does cover the devices on a case-by-case basis. I advise my patients to ask their FES device manufacturer for information about trial rental programs and third-party financing options.

Ideally, FES therapy should begin during out-patient rehabilitation and be covered by insurance. Patients should use FES devices during six to eight follow-up therapy visits in order to learn how to properly operate and maintain the device. Therapy should be followed by a home trial period and ulti- mately purchased if benefits are experienced.

When FES does not work
FES offers great potential for lessening the effects of foot drop, but it will not be the answer for every- one. Working with a physical therapist, each person can determine the best individual plan of action for improving mobility. That plan might include an AFO or FES device, strengthening and stretch- ing exercises, or using equipment like a cane or a walker. Even if FES is not a good option in your situation, there are other ways
to help you keep moving while living with MS.

Ben Thrower, MD, is the medical director of the Andrew C. Carlos MS Institute at Shepherd Center, Atlanta, Ga.

Momentum • Summer.2010

 

Amputee Coalition of America’s Limb Loss Task Force Warns of Increasing Limb Loss in the U.S.
Most at Risk Are Minorities and People With Diabetes and Vascular Disease

Knoxville, TN, April 28, 2010 – On average, 507 people lose a limb every day in the United States. This number is expected to almost double by 2050 unless a major public awareness campaign is launched and key prevention initiatives put in place, according to an expert task force convened by the Amputee Coalition of America. The Limb Loss Task Force met in Washington, D.C. on April 16-18 to develop a series of recommendations that will serve as the roadmap to limb loss prevention and improved care for amputees across the country.
 

The Task Force reviewed in-depth facts and figures that demonstrate the urgency for a strategic approach to limb loss prevention and improved amputee care such as:
 

  • 185,000 amputations occur each year.

  • 60 percent of all amputations are preventable.

  • Diabetes and vascular disease are the leading causes of limb loss and major drivers of increased limb loss incidence in the U.S.

  • Leg amputations alone account for more than $250 million each year in healthcare costs.

  • 75 percent of acquired pediatric amputations are from trauma – most notable is that, on average, 600 children lose a limb due to a lawnmower accident each year.

  • Minorities are at higher risk for limb loss – African Americans are four times more likely to lose a lower limb than Caucasians of similar age and gender.

  • As you age, your risk increases for limb loss, especially if you are an African American over the age of 35.

  • Amputee care is not consistent throughout the U.S. Studies show inpatient rehabilitation care following amputation significantly reduces re-amputation and mortality, but not all healthcare systems include inpatient rehab care for amputees.
 

“No comprehensive or integrated plan exists on the national or state level that reflects amputee care within the civilian population – no mechanism for limb loss prevention advancement, cost reduction, or care improvement for people affected by limb loss,” said Kendra Calhoun, president and CEO of the Amputee Coalition of America. “In convening this expert task force, our board of directors is taking initiative to create a plan that will have a powerful impact on resolving these issues in the next decade.”
 

The task force, consisting of experts in limb loss – physicians, podiatrists, nurses, physical therapists, prosthetists, health behavior experts, and researchers from the private and public sectors, the military and the federal government – recommended a four-point action plan.

Amputee Coalition of America’s Four-Point Action Plan

 
  • Implement a Blueprint for Limb Loss Prevention

  • Host a Consensus Conference to define national optimal care guidelines for amputees

  • Develop a national research agenda on limb loss prevention and amputation care

  • Create a model for amputee rehabilitation/community reintegration and early limb loss prevention to be implemented in hospitals and clinics around the country.

“We applaud the task force’s decision to support a comprehensive four-point plan. This is the right direction, and we are confident the support of the task force combined with our organization’s execution of the four-point plan, will provide a powerful impact in the fight against limb loss and the pursuit of improved amputee care,” said Terrence P. Sheehan, MD, Amputee Coalition of America’s medical director and chief medical officer of the Adventist Rehab Hospital of Maryland. “Keeping Americans healthy and living to their full potential are our primary goals.” Dr. Sheehan cited key early intervention strategies to be included in the national discussions about diabetes, obesity and smoking cessation across the life span from teens to elders.
 

“We need people to understand that limb loss can happen to them,” said Dr. Sheehan. “Having limb loss included with stroke and heart disease as a consequence of smoking and obesity is key in raising public awareness and including this risk in care pathways for people with diabetes and peripheral arterial disease is crucial.” The Limb Loss Task Force also stressed the importance of more research on limb loss prevention and on living with limb loss.
 

“The current incidence numbers are alarming, especially for the most vulnerable, our minority populations (African Americans, Hispanic/Latino Americans, American Indians), in the United States caught in this healthcare disparity. We can no longer take a passive role to implementing a successful “team approach” to support the amputee patient and the patient’s family,” said Dr. Sheehan. “A major topic of the task force’s discussion was the inclusion of the amputee’s family on the care team. We see the positive outcomes with our military combat amputees and those amputees whose care systems include family members, but we need to make this approach the norm, not the exception.”
 

The Limb Loss Task Force recommendations will be forwarded to the Amputee Coalition of America’s Board of Directors for discussion at their June meeting.
 

“The Amputee Coalition of America is pleased to convene this summit of experts in their fields. We thank Dr. Sheehan as well as Dr. Stephen Wegener, associate professor and director of rehabilitation psychology of Johns Hopkins University, for their leadership of this key initiative and look forward to continuing the work of the task force,” said Calhoun.
 

About the Amputee Coalition of America

The Amputee Coalition, based in Knoxville, Tennessee, is a national nonprofit organization whose mission is “to reach out to and empower people affected by limb loss to achieve their full potential through education, support and advocacy, and to promote limb loss prevention.” For more information about limb loss, please visit the Amputee Coalition Web site at amputee-coalition.org or call 888/267-5669.

PALM HARBOR

Yalew Birkie Assefa's spine is curved so badly, it resembles a question mark. His twisted body squeezes his lungs. Doctors say his condition could eventually kill him. But he can't afford the expensive surgery he needs.

Three years ago, he began canvassing the street of Addis Ababa, Ethiopia, where he lives, begging for donations. He went online looking for support groups and wrote seven or eight of them. Some said they couldn't help. Others didn't respond.

In June 2007, he wrote Debbie Ordes, executive vice president of the Scoliosis Association.

"This help seeking cry will have an answer to lift me up, to keep me from being discouraged and to make me productive again. There is not any slightest doubt that your support will be a second chance at life. Because of your help I will say goodbye to my pains," wrote Assefa, whose first language is Amharic.

Ordes, 44, who lives in Palm Harbor and is also president of the Palm Harbor chapter of the association, wrote back. She asked if he had an X-ray and how severe the curve of his spine was.

"I became surprised," Assefa, 30, recalled. "It tells me something good is coming."

It was. But he would have to wait almost three years.

Assefa was born in Debre Zeit, about 30 miles from Addis Ababa, Ethiopia's capital. He was 13 when he was diagnosed with scoliosis, a condition none of his relatives have.

Specialists told him he wouldn't grow much, but they didn't expect him to have any major problems. Today, at about 85 pounds and 4 feet 9 inches tall, he's about the size of a 10-year-old boy.

As he grew older his spine began to curve toward itself. By his late 20s, he struggled to walk a few hundred feet.

He was told that the surgery he needed in South Africa would cost the equivalent of $24,000. In the United States, more sophisticated surgery costs at least 10 times that. As a technologist working in an HIV lab, Assefa made around $200 a month.

Three years ago, after receiving Assefa's X-rays, Ordes tried to schedule surgery for him close to his home. Within six months, everything was set for surgery in Ghana. But the week of the surgery, he was bumped. She tried to set up surgery in Uganda with another doctor, but the hospital wouldn't cover the expenses. And an attempt to book surgery in the United States didn't work out either.

Assefa had to wait.

"(Ordes) always advised me not to give up hope," Assefa said. "My heart has already trusted her and developed hope."

Scoliosis, a sideways curvature of the spine, affects about 3 percent of the population.

Its cause can be neuromuscular or genetic. Assefa's scoliosis is idiopathic, "meaning we don't know what caused it," said Dr. Anthony P. Moreno, who has volunteered to perform Assefa's complicated surgery with Dr. Geoffrey Cronen at University Community Hospital in Tampa.

In serious cases, spinal curves can progress so much they can constrict the lungs, increase pressure in the veins and eventually lead to heart failure, Moreno said.

Assefa's curve is about 130 degrees. Surgery is often suggested for those whose spines curve 50 degrees or more.

In the United States serious cases like Assefa's are handled at a much younger age.

"Most times, in the U.S. we intervene long before it gets to that magnitude," Cronen said.

In 2009, the Scoliosis Association scheduled surgery at Mease Countryside Hospital in Clearwater for Tatiana Cojocaru, a young woman from Moldova in Eastern Europe.

During her preoperative tests, Ordes brought up Assefa's case and asked Moreno if he would operate on Assefa, too. He agreed.

They spent the next several months working with Cronen to coordinate Assefa's pro bono surgery team.

Assefa is the third person from abroad that Ordes and local medical teams have helped. Both previous surgeries were successful, Ordes said.

Cojocaru, who had surgery for a spinal curve similar to Assefa's, says she's doing well. Her spine now curves about half as much as it did before, she said Friday. She also gained more than 3 inches in height.

"I am enjoying my life now. I am going to school and doing a lot of things that make me happy," wrote Cojocaru, 26, in an online note.

Both Cronen and Moreno were part of her surgical team.

With curves that severe, the goal is to reduce them by about half. That's all the spinal cord can take safely, Moreno said.

Assefa arrived here on Wednesday after a 17-hour flight with his mother.

He's married and has a 9-month-old daughter named Hemen, and he's hoping the surgery will improve his quality of life.

"You can't eat well, you can't speak well, you can't even think well," Assefa said.

He's an Orthodox Christian and says he just wants to live to his potential and follow God's will.

Over the next few weeks, Ordes plans to chauffeur Assefa to all of his pre-op appointments and look out for him while he is here.

Several medical facilities, and dozens of specialists and other health professionals have also volunteered services and equipment.

Assefa will stay in a Palm Harbor condo for three or four months, provided there are no complications, before returning home. It will take a year or two to fully heal, Moreno said.

A Canadian woman has raised about $16,000 to cover his living expenses while he is here. Assefa met her while soliciting donations. She was in Ethiopia conducting research for her master's thesis.

Assefa is scheduled for two complex 10-hour surgeries, on April 29 and May 6.

During the first surgery, the surgeons make cuts in the spine to loosen it and make it easier to straighten. They also attach screws to each side of the spine and install temporary rods.

During the second, they remove a section of the spine where the curve is most severe. They place a small device where the vertebrae were and use permanent rods to manipulate the spine and correct the deformity.

The risk of death from the surgery is small, about 5 percent. The risk of paralysis is 5 to 15 percent, Moreno said. Cronen thinks it could be as high as 30 percent.

Assefa says he has no room for fear.

"What can I do with that?"

He's in an advanced country, with sophisticated technology and facilities, he said, "so everything will be all right."

To find out more about Yalew Birkie Assefa or scoliosis, call the local chapter of the Scoliosis Association at (727) 726 5412.

Photo: Douglas R. Clifford - Times

Times researcher Caryn Baird contributed to this report. Lorri Helfand can be reached at lorri@sptimes.com or (727) 445-4155.