July 28th, 2008 by Dr. Val Jones in Expert Interviews
Tags: Disabilities, History, Physical Medicine And Rehabilitation, Technology
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At the recommendation of my dear friend and fellow blogger, Dr. Ramona Bates, I attended a lecture entitled, “Limb Labs: Getting Amputee Soldiers Back to Work After World War I.” The lecture was held at the National Museum of Health and Medicine on the Walter Reed campus in Washington, DC. Both lecturers (Beth Linker and Jeffrey Reznick) did a wonderful job of transporting the audience back in time, outlining the cultural beliefs and historical context of the day. This is what I gleaned from their commentary:
Roughly 100,000 men became amputees as a result of injuries from the American Civil War (1861-1865). At the time there was no government-sponsored program to fit amputees with prosthetic limbs, so veterans were on their own. Prosthetists catered to the middle and upper classes who paid cash for their custom prostheses. Veterans of lesser means could only afford a peg leg, and some would sell photos of their stumps (like baseball cards) to support themselves. Many veterans were not effectively reintegrated into the work force after their injuries, and were considered “charity cases” by the American public.
By the time World War I began, there was significant social stigma associated with amputation. Peg legs and hook arms were synonymous with “blood thirsty villains” like Captain Ahab from Moby Dick, and Captain Hook from Peter and Wendy. As America braced for a fresh round of young amputees, the government prepared occupational rehabilitation programs in an attempt to reduce deliquency among injured veterans. An entire PR engine was developed to set expectations that veterans would become “active workers, not charity cases.” And authors like John Galsworthy, began describing the vocational reintegration of war heroes as “sacred work.”
Around the turn of the 20th century, technology had advanced to allow mass production of various goods. Factories were created to produce large quantities of standardized items like clothing, and the corresponding reduction in cost revolutionized the standard of living for many poor and middle income Americans. Not surprisingly, enterprising individuals looked for ways to mass produce costly, custom products – and be the first to market with a new, affordable option.
Seizing on the opportunity that World War I created (i.e. a new market for prosthetic limbs), a couple of orthopedic surgeons recognized an opportunity to take over the prosthetic limb market by creating a “one size fits all” solution that they could sell to the government. The government was eager to avoid the costly mistakes of the Civil War (i.e. not having a plan for reintegrating young men into the work force), but couldn’t afford the prosthetist’s fee of $200 per custom prosthetic limb. The “E-Z leg” was born, and at a cost of only $20 per prosthesis, it seemed like a steal.
The E-Z leg solved a few problems for the government – 1) it allowed injured veterans to walk off the ships (instead of being carried on stretchers) that brought them home from Europe, thus minimizing the public appearance of the toll of war 2) it allowed them to offer cosmetically appealing prostheses, rather than peg legs, to amputees 3) it increased the vocational rehabilitation potential of veterans.
Of course, the “E-Z leg” didn’t have the best marketing ring to it, so it was rebranded the “liberty leg” and hailed as a triumph of modern technology. In reality, though, it wasn’t much of a functional improvement over a peg leg. In prosthetic design, a “one size fits all” approach ensures that no one gets a truly good custom fit. But psychologically, the veterans were pleased to have a cosmetically appealing limb, and most had no idea how much better a custom limb could be. The public was satisfied by the government’s generosity, not realizing that the government had actually budgeted $75/amputee at the beginning of the war. What happened to the $55 savings? We’ll never know.
One thing’s for sure, the orthopedist owners of E-Z leg made out like bandits. John Galsworthy became so disillusioned with his push for “sacred work” that he wrote, “Empty promises and rhetoric of heroism… The war killed the self-importance, faith and idealism in me.” He never spoke of vocational rehabilitation for war veterans again.
***
As I watched the NBC nightly news yesterday, I noted an interview with a young Marine recovering from bilateral leg amputations (caused by an IED explosion in Iraq) at Walter Reed. When asked if he was worried about walking again he simply replied, “I don’t worry about that. With the artificial legs they have these days, I’ll probably be better than ever.”
And I thought to myself, “the more things change, the more they stay the same.”This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
July 28th, 2008 by Dr. Val Jones in Expert Interviews, Health Policy
Tags: Cancer, Finance, Hospitals, Medicare, Pain Management, Surgery
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I had the chance to interview Drs. Carmona, Satcher, and Novello about the current state of America’s war on cancer. I’ll post each conversation in a separate blog entry. This post explores Dr. Novello’s views on creating a healthcare navigation system for patients with cancer.
Dr. Val: How are cancer patients navigating the system currently?
Dr. Novello: They are relying primarily on their oncologists to help them navigate. But even though oncologists want to help their patients as much as possible, the reality is that they are taking care of thousands of patients at a time and simply don’t have the bandwidth to assist with the level of detail necessary.
Cancer is extremely complicated and patient care is not just about diagnosis, staging, and treatment. It also includes tests for genetic markers, coordination of genetic counseling, finding appropriate clinical trials for the patients to participate in, locating a continuity of care supervisor, rehabilitation services, scheduling chemotherapy, radiation, and surgical treatments.
Cancer doesn’t happen in a vacuum – patients also have other medical conditions that need to be managed along with the cancer diagnosis. In addition, one must create a comprehensive follow up plan for survivors, including scheduling of surveillance tests to identify possible recurrences. If a cure is not an option, then palliative care and hospice services must be coordinated. In addition to that, patients must create a living will, designate someone to have power of attorney over their care, and prepare for the legal aspects of their passing. This is why a diagnosis of cancer can be overwhelming to most people, and they are in desperate need of a structured program to help them navigate the complexities and to ensure that the ball is not dropped anywhere along the way.
Dr. Val: What’s the best way to help cancer patients more successfully navigate the healthcare system?
Dr. Novello: We need to create a simple, comprehensive, and accurate way to offer guidance to all Americans with cancer so that they can get the best care possible. You know how some hospitals have painted lines on the floor to help people to navigate from A to B in the building? Well we need this kind of line system for cancer care.
Ellen Stoval at the National Coalition for Cancer Survivorship, Lance Armstrong and his Foundation, members of the Institute of Medicine and the Centers for Disease Control and Prevention, and members of the President’s Cancer Plan at the National Cancer Institute, have formed a coalition to delineate the features of an ideal cancer patient navigator system. Senators Kennedy and Hutchison are preparing a bill for congress – it would ensure that Medicare covers a cancer patient navigator service. It remains to be seen who will build the service, and how it will be distributed.
Dr. Val: What are the key elements of a cancer patient navigator system?
Dr. Novello: The coalition is unanimous in their opinion that the navigator must provide culturally sensitive, clear information in the native language of the patient. A cancer patient navigator should include assistance with:
Diagnosis: Every patient needs to know the name and stage of the cancer that they have.
Treatment: The treatment plan (including chemotherapy, radiation, and/or surgery) that is recommended for them.
Scheduling: A schedule of all their appointments.
Pain Management: A comprehensive plan for pain management so that the patient is not denied access to narcotics if needed.
Psychosocial Services: Access to psychosocial services to assist with coping strategies for depression and family and marriage counseling.
Insurance Assistance: a plan for financing the cost of treatment – specifically an insurance advocate who can help the patient understand and maximize their insurance benefits, and if they’re uninsured, a way to get coverage for the care they need.
Peer Support: A list of support groups that can assist the patient with their emotional needs.
We need everyone to support this upcoming bill so that all cancer patients will have access to a navigation tool that will help them get the care they need in a timely fashion. Successful navigation of this healthcare system can mean the difference between life and death for cancer patients.
Dr. Novello is the Vice President for Women and Children’s Health Policy at Florida Hospital in Orlando, Florida.
*See the National Call to Action on Cancer Prevention and Survivorship*This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
July 25th, 2008 by Dr. Val Jones in Expert Interviews, Health Policy
Tags: Cancer, Research
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I had the chance to interview Drs. Carmona, Satcher, and Novello about the current state of America’s war on cancer. I’ll post each conversation in a separate blog entry. This post explores Dr. Carmona’s views on diagnostic testing and early intervention.
Dr. Val: You said that screening tests could improve outcomes in 90% of people with cancer. Tell me more about that.
Dr. Carmona: First of all, a lot of people don’t know they have cancer until really late in the game. They show up asking things like “How come this thing is growing on my chest?” or “Why does my stomach hurt?” With appropriate screening tests targeted especially towards people who have risk factors (that one can determine by asking them about family history and environmental risk factors) you can capture about 90% of cancers at an early stage. Diagnosing cancer early is the key to improving outcomes and the chance for cure.
Dr. Val: Which are the most important cancer screening tests that people are not accessing now?
Dr. Carmona: All of them. Routine breast exams, mammograms, rectal exams, colonoscopies are the most commonly missed screening exams. And science is advancing at such a rate that we’ll soon be able to test for cancer with biomarkers – that is, blood tests that will determine whether or not cancer is present or if a person is at a higher genetic risk for cancer.
We already know about the BRCA1 and BRCA2 genes that predispose women towards breast cancer, but most physicians still don’t test for them. We need to make sure that we use all the science available to us, and set up a system that ensures that all patients get the appropriate screening tests at the appropriate time intervals. If we did that, 90% of patients diagnosed with cancer could expect improved outcomes.
Dr. Carmona is the Vice Chairman of Canyon Ranch, and President of the Canyon Ranch Institute.
Next post: Dr. Satcher on health disparities in cancer treatment.
*See the National Call To Action On Cancer Prevention and Survivorship*This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
July 25th, 2008 by Dr. Val Jones in Expert Interviews, Health Policy
Tags: Cancer, News
1 Comment »
“The gap between what we know and what we do is lethal.”
— Kay Redfield Jamison, Ph.D.
I attended a press conference today announcing the National Call to Action on Cancer Prevention and Survivorship. Lance Armstrong and 4 former US Surgeons General (Carmona, Satcher, Elders, and Novello) took turns outlining what they saw as the most critical aspects of advancing the war on cancer. I was offered 1:1 interviews with three of the four doctors, thanks to the press conference sponsors, The Canyon Ranch Institute, and the Lance Armstrong Foundation. These interviews will follow in my next blog post.
Each speaker made a compelling and passionate plea for redoubling our efforts on the war on cancer (first declared in 1971 by Richard Nixon). Some of the key points included:
Lance Armstrong called for the FDA to regulate the tobacco industry, for the government to increase funding to the National Cancer Institute, and for access for all Americans to the same level of cancer care.
Dr. Richard Carmona called for culturally relevant preventive health education, for programs to decrease smoking rates and improve diet and exercise among Americans.
Dr. David Satcher called on Americans to act on what we already know. “Seventy percent of smokers want to quit” he said. The trick is to get them to follow through.
Dr. Joycelyn Elders emphasized the unacceptable quality gulf between healthcare for minorities and the poor versus the wealthy. She said, “poverty is the most potent carcinogen.”
Dr. Antonia Novello focused on the challenges that cancer patients face in navigating the healthcare system. She called for congress to pass a bill requiring Medicare to pay for coordination of care for cancer patients. She envisions a culturally sensitive, personalized service that will facilitate record keeping, improve therapy compliance, and help the patient to manage their care more effectively.
I was most intrigued with Dr. Novello’s arguments, since I’ve been interested in the concept of creating an “OnStar” navigation system for healthcare for several years. The cancer patient population is arguably the sub-group of highest need. It will be interesting to see how this shakes out in congress.
In my next post I’ll offer interview notes from my 1:1 meetings, so stay tuned!This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
July 20th, 2008 by Dr. Val Jones in Expert Interviews
Tags: Bladder Cancer, Cancer, News, Oncology, Research, Surgery, Urology
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This is part 2 of an interview with urologist Mark Schoenberg. Please click here for part one of the interview.
Dr. Val: How is bladder cancer treated?
Dr. Schoenberg: Bladder cancer can be grouped into two categories: non-invasive disease and invasive disease. About 80-90% of the time the cancer is formed by the cells of the inner lining of the bladder, ureters, and kidneys and is non-invasive. This type of bladder cancer doesn’t spread or invade the bladder wall, so it doesn’t threaten the life of the patient, but it can recur.
Non-invasive cancers are usually removed surgically via a scope that is inserted into the bladder via the urethra, and then afterwards there are a variety of medicines that can be infused into the bladder. Those medicines are like a kind of weed killer for bladder cancer.
Unfortunately up to 20% of patients have invasive tumors at the time that they are diagnosed. Once the bladder cancer has spread outside the bladder wall, surgery is needed to remove the primary tumor and then IV chemotherapy and sometimes radiation therapy are needed to treat the life threatening, metastatic disease.
Dr. Val: Is there any way to screen for bladder cancer?
Dr. Schoenberg: Unfortunately at this time urine tests for bladder cancer are very expensive, and they don’t detect cancer reliably. However, many researchers (including myself) are currently on a hunt for specific bladder cancer markers that are inexpensive and reliable. Once we find such a marker or group of markers, it would make sense to begin screening — at the very least — high risk groups such as smokers or people with occupational exposures to chemicals.
Dr. Val: What are the most promising advancements in bladder cancer treatment? Is there new research in the pipeline that could improve its diagnosis or treatment?
Dr. Schoenberg: There are two different areas of research interest in bladder cancer. The diagnostics arena — finding cancer more efficiently, effectively, and less invasively — and the therapeutics arena — developing new tools, drugs, and agents to get rid of cancer cells.
On the diagnostic front, molecular diagnostic researchers are looking at abnormal cancer proteins and DNA that can be detected in urine samples. Because of this research, in the next 5-10 years it wouldn’t surprise me if we no longer had to rely on cystoscopes for the diagnosis of bladder cancer. Also we’d like to develop molecular and genetic profiles in order to risk-stratify people more successfully (i.e. figure out who is at greater risk for bladder cancer, and make sure they get tested).
On the treatment front, there are a number of companies developing targeted therapies for bladder cancer. It’s possible that these therapies will reduce the risk of progression and recurrence in people with bladder cancer.
Unfortunately, bladder cancer has only attracted a fraction of the research dollars that other cancers have in patients in the same demographic (like pancreatic cancer). In fact, NIH funding for bladder cancer research is pitifully small and shrinking, despite the fact that there are 600,000 Americans who have bladder cancer right now. Not only that, but bladder cancer is one of the most expensive cancers to treat – because it requires repeated cystoscopies, catheter-based infusions, repeat surgeries, and sometimes chemo and radiation. Bladder cancer treatment costs Americans about 1 billion dollars a year.
Dr. Val: Why isn’t bladder cancer receiving the research funding it deserves?
Dr. Schoenberg: Successful cancer groups have highly visible champions for the disease – like Lance Armstrong for testicular cancer, or Susan G. Koman for breast cancer. Research funding seems to be strongly influenced by highly visible people getting out there and making a ruckus. We need powerful spokespeople to help Diane Quale at the Bladder Cancer Association Network to get the word out.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
