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Talking Science With Patient Advocates

Laurie Edwards has a rare chronic disease called primary ciliary dyskinesia. Her symptoms are quite similar to those associated with cystic fibrosis, and her young life has been punctuated by numerous hospitalizations, physical limitations and the occasional near-death experience. She is a remarkably upbeat woman, and attributes her self confidence and optimistic outlook to her loving friends and family.

Laurie is part of the patient blogging community online. She reads physician blogs with interest, and wants to protect others like her from snake oil and misinformation. She recently interviewed me about my pro-science views for a new book that she’s writing. People like Laurie play a critical role in accurate health communication, and I welcome the chance to discuss science-based medicine with them. Here are some excerpts from our chat:

Laurie: There is a schism between ardent supporters of evidence-based medicine and patients who feel strongly about the value of CAM. Why do you think it is so appealing to patients with chronic illness, despite the lack of research to support it?

Dr. Val: It’s really hard to accept the limits of modern medicine. We can’t cure every disease, we can’t effectively treat every symptom, and we can’t prevent death indefinitely. It’s human nature to want to control our destinies, to reject the cards we’ve been dealt. In that sense I have the utmost sympathy for people who choose to turn over every treatment stone in the face of a daunting diagnosis, or when they are suffering from disease.

However, we have to recognize how vulnerable we are to snake oil when we are sick. There are entire industries that prey on the ill, offering patients false hope in return for pricey products and procedures. They know that we’ll do anything when we’re suffering, including buying in to a carefully constructed fantasy (often couched in “medical-sounding” jargon). Peddling fake medicine to sick people is morally unjustifiable.

In the past 10+ years of rigorously testing Complementary and Alternative Medicine, the NIH has found no single remedy that has proven effective. However, very few media outlets have had the courage to question the medical value of these therapies (notable exceptions include Wired MagazineNewsweek and the Associated Press). As a physician this disappoints me greatly, because my patients are more likely to get their news from TV than from me. And in an era where Jenny McCarthy is accepted as a medical spokesperson (she encourages moms not to vaccinate their kids), it’s very difficult to empower people with accurate health information.

So the bottom line is this: wanting to fight against disease is a good thing. But the most important battles are won with science. Compassion and kindness are part of good medical care – and CAM is usually no more than an expensive distraction from real cures or acceptance of our physical situations.

Laurie: On a somewhat related note, what are your thoughts on evidence-based medicine, patient advocacy groups, and the controversy/politics around diagnoses like fibromyalgia and chronic Lyme disease?

Dr. Val: I think that patient advocacy groups exist because our healthcare system is broken. There are many tragic stories of patients harmed by misdiagnosis, neglect, or layers of bureaucracy – and it’s wonderful that they and their loved ones are fighting so that others don’t share a similar fate.

However, occasionally advocacy groups engage in misplaced passion. They mean to protect and empower others with their actions, but when they rely on false hypotheses to promote their agendas, they can do more harm than good. Take the autism community for example. Of course parents are eager to discover the cause of autism so that it can be treated – but unfortunately, some have simply decided to attribute the cause to something random and unrelated. Vaccines are not the cause of autism – and some advocacy groups have squandered their energy on promoting a theory that is not based on evidence. Imagine how much more useful it would have been to direct that fervor to finding the real cause? Instead, some advocacy groups have whipped everyone into a state of paranoia over a preventive procedure (vaccination) that is one of the greatest triumphs of modern medicine. In a parallel universe, scientists have discovered genes associated with autism and we are now beginning to unravel the genetics of the disease. This subject is important to me because I have many relatives with autism.

As far as the fibromyalgia/chronic Lyme controversy is concerned, I think it only highlights how far we are from removing stigma from mental health issues. There is no concrete evidence for a physical cause of fibromyalgia (and many cases of antibody negative Chronic Lyme), and the patients I’ve treated have done well with increased physical activity, anti-depressants, and improved sleep. Why is it important for people with chronic sleep deprivation (with body aches and irritability) to be given the label of “fibromyalgia?” Is it for ease of coding and billing? For destigmatizing a mental health issue? Or for synthesizing symptoms into a syndrome with a name? It’s not important for people to fight about the etiology of the disease – it’s important for people to get the help and support they need to feel better and be more functional.

Laurie: Some think the direct-to-consumer advertising and the influence of Big Pharma and “me too” drugs have created a population of patients who are healthier than past generations but don’t feel it—they focus on complaints others might have just ignored. Do you agree with this?

Dr. Val: There’s no doubt that advances in medicine have extended and improved our lives. However, we are not seeing the full effect of pharmaceutical benefits since as many as 50% of prescriptions go unfilled or aren’t used correctly.

On the flip side, for-profit companies that need to please shareholders will behave in predictable ways. That doesn’t bother me so much when widgets are being sold, but when peoples’ lives are in the balance, it’s important to get people the right care, not necessarily the most profitable one. In my opinion, direct-to-consumer marketing has dealt a serious blow to Big Pharma’s credibility. Their true success lies in making good drugs that help people – not in creating false demand for medications that provide only marginal benefits.

But the untold story is that it’s become so incredibly expensive to discover, research, test, and get FDA approval for game-changing drugs, that Big Pharma’s fall back has become the “me-too” industry. This is resulting in scientific stagnation – and we’re all suffering for it.

Laurie: Health care reform is a huge topic right now, and there is much emphasis on prevention and wellness when it comes to diseases like type 2 diabetes, heart disease, etc, where lifestyle changes can make a big difference. Where does this push for prevention leave patients whose outcomes may not necessarily be as impacted by behavioral/lifestyle changes? I’m thinking here of genetic disorders and diseases where disease progression is an issue, but the more common concept of prevention doesn’t apply in the same way. What can we hope for/expect for these patients in terms of health reform?

Dr. Val: We have to recognize that 75% of our healthcare dollars are spent on the treatment and management of chronic disease, and that those diseases are 80% preventable with diet and lifestyle interventions. Of course, the other 20% are NOT preventable. There will always be people who are injured at random – perhaps by gene mutations (such as cancer), genetic diseases (like Cystic Fibrosis), or even car accidents (spinal cord injuries). It’s important for everyone to recognize that personal choices are not the basis for all disease. Just as we can’t choose our parents, we can’t choose our genes.

It’s very common for cancer patients to wonder if they did something to bring on their cancer. They become anxious and struggle with guilt. I think that’s really unfortunate because in many cases it’s simply a matter of random chance, mixed with some (potentially unknown) genetic factors. When you think of how many trillions of cells we have in our bodies, and that they’re constantly turning over or making copies of themselves – it’s incredible that there aren’t more errors made in the copying process. Cancer is just a messed up copier situation out of control.

It’s my hope that the government continues to fund research for “orphan” (rare) diseases, and supports insurance coverage for all Americans, especially for those 20% who struggle with chronic disease through no fault of their own.

It’s my hope that the government continues to fund research for “orphan” (rare) diseases, and supports insurance coverage for all Americans, especially for those 20% who struggle with chronic disease through no fault of their own.There is a schism between ardent supporters of evidence-based medicine and patients who feel strongly about the value of CAM. Why do you think it is so appealing to patients with chronic illness, despite the lack of research to support it?
It’s really hard to accept the limits of modern medicine. We can’t cure every disease, we can’t effectively treat every symptom, and we can’t prevent death indefinitely. It’s human nature to want to control our destinies, to reject the cards we’ve been dealt. In that sense I have the utmost sympathy for people who choose to turn over every treatment stone in the face of a daunting diagnosis, or when they are suffering from disease.
However, we have to recognize how vulnerable we are to snake oil when we are sick. There are entire industries that prey on the ill, offering patients false hope in return for pricey products and procedures. They know that we’ll do anything when we’re suffering, including buying in to a carefully constructed fantasy (often couched in “medical-sounding” jargon). Peddling fake medicine to sick people is morally unjustifiable.
In the past 10+ years of rigorously testing Complementary and Alternative Medicine, the NIH has found no single remedy that has proven effective. However, very few media outlets have had the courage to question the medical value of these therapies (only Newsweek and the Associated Press). As a physician this disappoints me greatly, because my patients are more likely to get their news from TV than from me. And in an era where Jenny McCarthy is accepted as a medical spokesperson (she encourages moms not to vaccinate their kids), it’s very difficult to empower people with accurate health information.
So the bottom line is this: wanting to fight against disease is a good thing. But the most important battles are won with science. Compassion and kindness are part of good medical care – and CAM is usually no more than an expensive distraction from real cures or acceptance of our physical situations.
On a somewhat related note, what are your thoughts on evidence-based medicine, patient advocacy groups, and the controversy/politics around diagnoses like fibromyalgia and chronic Lyme disease?
I think that patient advocacy groups exist because our healthcare system is broken. There are many tragic stories of patients harmed by misdiagnosis, neglect, or layers of bureaucracy – and it’s wonderful that they and their loved ones are fighting so that others don’t share a similar fate.
However, occasionally advocacy groups engage in misplaced passion. They mean to protect and empower others with their actions, but when they rely on false hypotheses to promote their agendas, they can do more harm than good. Take the autism community for example. Of course parents are eager to discover the cause of autism so that it can be treated – but unfortunately, some have simply decided to attribute the cause to something random and unrelated. Vaccines are not the cause of autism – and some advocacy groups have squandered their energy on promoting a theory that is not based on evidence. Imagine how much more useful it would have been to direct that fervor to finding the real cause? Instead, some advocacy groups have whipped everyone into a state of paranoia over a preventive procedure (vaccination) that is one of the greatest triumphs of modern medicine. In a parallel universe, scientists have discovered genes associated with autism and we are now beginning to unravel the genetics of the disease. This subject is important to me because I have many relatives with autism.
As far as the fibromyalgia/chronic Lyme controversy is concerned, I think it only highlights how far we are from removing stigma from mental health issues. There is no concrete evidence for a physical cause of fibromyalgia (and many cases of antibody negative Chronic Lyme), and the patients I’ve treated have done well with increased physical activity, anti-depressants, and improved sleep. Why is it important for people with chronic sleep deprivation (with body aches and irritability) to be given the label of “fibromyalgia?” Is it for ease of coding and billing? For destigmatizing a mental health issue? Or for synthesizing symptoms into a syndrome with a name? It’s not important for people to fight about the etiology of the di

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