Naked Medicine

Let's Face It: Medicine is Business

Category: Patient Groups

Which Side Are You Really On, Jane Chin?!

I received what is probably the most passionate email from a reader of this blog that I’ve ever gotten since creating NakedMedicine.com in 2006. The email concludes with this:

I can’t figure out what your agenda is Ms Chin. Are siding with the poor hard working physicians who are fighting a losing battle with their idiot patient’s lifestyles? Are you siding with the tirelessly industrious pharmaceutical scientists who are selflessly dedicating their efforts to cure our ills? Are you siding with the poor neglected suffering individuals who are bravely pushing onward in their lives, struggling with disease, possible disease, possible pandemics, or just plain plainness requiring cosmetic medicine? Doctors, business, persons, for whom are you advocating?

I was shocked by the email, because this reader “hit the nail on the head”! He can’t figure out what my agenda is, because my agenda is in NONE of those sides he described. In other words, if I were guilty of picking “a side”, it wasn’t part of the “usual suspects”.

Here’s my very long response to my reader, to whom I’m grateful, because he took the time and effort to share with me this question that obviously is frustrating him.

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You wrote what you felt, and I don’t fault you for that. I can sense a real feeling of frustration from you, and I don’t blame you for feeling frustrated about the healthcare system that seems to be broken in many ways.

I want to address specific points you brought up – first one being ‘cures’. I genuinely don’t think that the drug industry is prevented from, or are resistant to, discovering cures for diseases. It’s not about ‘cure’ versus ‘not the cure’ that is the problem. It is often the economy of scale that is the problem, and a very understandable one when you consider that the drug industry is – and has to run like a business – in order to remain in business. I have no doubt that the drug industry would love to find a cure – because they can charge for the price of a ‘cure’ and be justified in charging such a price.

The problem on the one hand is that many times we simply cannot find ONE underlying factor of a disease, especially the chronic diseases like diabetes and heart disease (in fact, many diabetics die of a heart attack and don’t live long enough to die of diabetes complications, especially those consuming a western diet). It is not like a bacterial infection where we can pinpoint ONE origin of the disease and target that specifically, the way we can target an infecting bacteria with an antibiotic and ‘cure’ the patient.

The other problem is about the number of people with a certain disease. For example, there may be fewer companies willing to research rare diseases that may be ‘repaired’ let alone ‘cured’, simply because the companies need to get the money somehow to do all the experiments and clinical trials necessary to jump through regulatory hurdles to even get the drug approved. When i was a graduate student, doing what are pretty simple experiments (and not even in people – i worked off the petri dishes), i was often using reagents that cost my employer thousands of dollars to purchase from reagent companies. Each of my experiments has to cost at least a thousand bucks, and many of my experiments failed and produced no result.

These prices are nothing compared to the amount of money it costs to run a clinical trial at the scale required by the FDA. Now the drug companies have to pay for the drugs, the cost of mountains of paperwork needed to get the clinical trials started, the doctors who do the clinical trials (and some doctors get really snobby and brag to each other about how much $ they can muscle out of drug companies “per patient” to enroll in the drug companies’ trials), not to mention the “overhead” that the academic institutions charge the drug companies because their doctors work there (and these overhead costs can mean more than 50% of the total study budget).

And then most of the drugs end up not passing the FDA’s requirements and fail to get approved. So if you’re running a company, you will tend to want to go into areas where you will likely have more customers – heart disease for example – just so you stand a better chance of keeping your company operating should it succeed in getting a drug treating that disease approved. This is also why the government has to create incentives for companies that are willing to go into rare or “orphan” diseases – for example, Gaucher’s disease is a rare lysosomal storage disease affecting maybe 1 in 40,000 people. A drug company that competes in this market will be happy selling 1 prescription every 3 months.

I honestly do not view drug companies as entities that profit from the suffering of others, because of the logic of this assumption: If drug companies are creating diseases in people in order to make drugs for the very diseases they created, then that to me qualifies for the statement. However, drug companies happen to offer the tools to treat the disease, not unlike device companies making scalpels and surgical tools to allow doctors to cut us open should our illnesses demand it. It seems illogical to me to accuse device companies for profiting from people having tumors that require scalpels to operate and excise the tumors – unless we’re also implying that the scalpel companies are putting tumors in people that only their brand of scalpel can remove.

Additionally, I have observed that for the most part, people in our society today tend to prefer that we “have a pill to treat XYZ”, so that they do not have to do the hard work required to get their own health back on track. And then you add to the fire media agencies that charge pharma companies millions of dollars to come up with brainless gimmicky advertisements, and it is no wonder why many people feel like the drug companies are “profiteers of suffering.” Some years ago, there was a government funded study that shows that rigorous diet and exercise will help reduce diabetes risk at a very real level – in fact – the study patients who had diet and exercise regimen did as well in reducing their diabetes symptoms as study patients who took an anti-diabetic drug.

But why hasn’t the government or the doctors (not the drug companies – their responsibility is in making drugs) done anything about this amazing result? Because the of costs involved to the clinics in order to make “diet and exercise” possible in patients at a therapeutic level. Clinics would need to hire case workers and nurses whose job is to counsel and support and follow each and every single patient who opts for this “natural and effective” treatment. OK then, how about asking patients themselves to do this? Seriously, if you are a patient at risk for diabetes (i.e. risk factors are there, but patient is still “pre-diabetic” and not yet requiring drugs to control their blood sugars), you have everything you need at your disposal to go for the natural and effective (and less expensive than prescription drugs) cure! why aren’t patients doing this? because willpower and discipline are key – and you’re going to need both for a lifetime to prolong the onset of disease.

I can share this true experience – my husband had prediabetic blood work results some years ago when I urged him to see an endocrinologist, because his side of the family also suffers from diabetes. the endocrinologist told him that because he was so young (not yet 40 at the time), she preferred that he try the old fashioned diet and exercise, and see if he could get the risk factors down, before she put him on a drug. He happens to have a level of willpower and discipline that even I don’t have – and he altered his lifestyle dramatically – and it was enormously difficult. 6 weeks later he went back and the endocrinologist was so impressed with his results that she told him that most of his blood work results were approaching normal numbers. But she also told us that not every patient she sees can make this happen – and often she is forced to give the patient drugs to make sure that the patient doesn’t end up with uncontrolled diabetes symptoms (resulting in all sorts of nasty things including death).

I see drugs as exactly what you said you wished to see – repairs and cures. However, the reality is, few are truly cures because of the complexities of most diseases, and repairs don’t always “fix” things without creating new problems (called side effects) EXACTLY because of the complexities of most diseases.

The doctors’ hands are tied not by pharma companies, but by insurance companies as well as their own malpractice lawsuit concerns. Your average primary care doctor has to track how many patients he sees everyday because he needs to make sure he breaks even. That’s not the drug companies doing, but the insurance companies that capitate how much doctors are paid for doing what. So you also have a system that don’t reward doctors for spending more time with patients – in fact – you’re making it very bad business for the doctor to spend too much time because then he’ll lose money that day – and this does not do well to cultivate trust with patients who then need to heed the doctors’ advice about doing the hard things they need to do to steer their health status back on track.

I hope my email begins to help you understand where I am coming from – perhaps I can’t take any sides because I don’t think there are any sides that I can reasonably take without acknowledging that there are other entities that also need to be held accountable. the healthcare ‘system” is truly a “system” and a staggering, complex one at that. the best I can do is to help the consumers – people like you and me – to think for ourselves about what is being “sold” to us whether it’s from the drug companies, insurance companies, the government, the doctors, even patient groups. If I am guilty of siding with anything, it will be on the side of “critical thinking” about the system of healthcare with all of its players.

Best wishes,
Jane Chin

RLS Anti-Ad Video is as Bad as Drug Company DTC

A Consumer Reports video of the Requip DTC ad (another drug used to treat RLS, manufactured by GlaxoSmithKline) has been published.

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Let me first state that I’ve seen the Requip ad in question many times when I watch TV, and each time I have the same negative reaction to the ad. This means I have some negative personal bias against the ad itself and the way the company is marketing this to consumers en masse. That said, I decided not to go to the drug company’s “defense video”, which may predispose me to additional bias, and I present my analysis of the anti-ad video by Consumer Reports.

A young woman is seen in the ad to go through the drug company’s ads line by line. She comments on the statements made by the drug company ad. She doesn’t really “analyze” the statements as much as comment – and there’s a big difference between an unbiased analysis and editorial/opinion/commentary (example, “Ooh! Sounds Serious” and “Sounds like the side effects are worse than the condition!” and lots of sentences beginning with exclamations like “Ahh!”).

Given that she doesn’t suffer from RLS, her commentary is biased and nothing more than an opinion. I’d like to hear from a member of that 3% population who DOES suffer from RLS and hear whether he or she agrees that the side effects are worse than the condition.

She does mention selectively the 2 people whose compulsive gambling caused them to lose over $100K each as a result of the side effect of Requip. $100K is a lot of money, no question about it. But 2 people – that’s a small “sample size” and in the medical community and the lines of “evidence based medicine” would constitute “case reports” – the weakest type of “evidence” and would be considered anecdotal more than actual evidence. Other types of side effects like nausea and headache probably had more reports, but $100K is more sensational. It seems like the Consumer Reports anti-ad video is using some of the techniques that they’re criticizing the drug company for doing – sensationalizing what is actually a very small percentage of occurrence.

Does the Consumer Report ad make valid points? Sure. Is the anti-ad “ad” video a spin? Yes. A gloating male voice comes at the end to say “This ad is sponsored by – NO ONE!” as a vehicle to suggest that everything it claims in the its video must be unbiased and therefore, credible. However, the video itself contains very little evidence, lots of editorial claims, and does not address symptoms of the actual condition of RLS so that consumers can be “better educated” if Consumer Reports does not believe the GSK’s Requip ad is doing a good job.

This reminds me a bit of smear campaigning that politicians use against each other. What I’d like to see is a curbing of anti-anything from activist groups. For once, I’d like to see someone spend the dollars coming up with the better solution to educating consumers credibly and objectively and setting a positive example for others to follow.

Source: John Mack who has been following the restless leg syndrome (RLS) “phenomenon”.

Stronger Warnings on Heart Failure Risk for Avandia and Actos Type Drugs

Update: “FDA Adds Boxed Warning for Heart Attacks to Anti-Diabetes Drug Avandia. Agency says drug to remain on market, while safety assessment continues”

The US Food and Drug Administration (FDA) is requiring some Type 2 diabetes drugs to change its product label to include a heart failure risk warning. This “boxed” warning emphasizes that the class of thiazolidinedione drugs may cause or worsen heart failure in certain patients. Drugs in this class included Avandia (rosiglitazone), Actos (pioglitazone) Avandaryl (rosiglitazone and glimepiride), Avandamet (rosiglitazone and metformin), and Duetact (pioglitazone and glimepride). These drugs are currently approved in the US for treating type 2 diabetes in combination with diet and exercise. Postmarketing surveillance of these drugs is required by the FDA as a condition of approving these drugs and making them available on market. Postmarketing reports have shown cases of warning signs of heart failure: significant weight gain and edema (water retention and accumulation in organs). Source: FDA.

Massachusetts Mandatory Health Insurance Law for Young People

I don’t know what your finances looked like when you were when you were 18 or in your early twenties, but I was a starving graduate student barely able to afford rent. If now I have to pay at least $100 each month on top of my expenses, I’d sink deeper into debt unless I move out of that state. Now, MA is requiring all taxpayers to prove that they have health insurance, which would include young adults who are still either in school or starting to chip away at student loans with their first jobs.

Of course, the politicians are going to espouse the wonders of early prevention and encouraging young people to take better care of their health so that they could lead long, healthy lives. One of the reason why HMOs love healthy adults and young people is because the number crunchers have found that they are less likely to use health care simply because statistics show that this population is healthier than an older age group. This means the HMOs will come out ahead in their business of covering for treatment and cost of care. The truth is, the Massachusetts bureaucrats want the young to pay and subsidize health care utilization by the aging population. We’ve seen how well this concept of “taxing one generation to pay for the other generation” has worked for social security; health care is a hegemonic burden that is finding its expenses to all segments of the population (except for illegal immigrants, but that’s another unwieldy topic).

I’m glad I’m not a young person living in Massachusetts.

The Fine Print in Breast Cancer Support Products

Wall Street Journal published “How to Tell if a Pink-Ribbon Product Really Helps Breast-Cancer Efforts” by Tara Parker-Pope on October 10, 2006 addressing the commercialization of breast cancer and how consumers can determine how much of the sales go to breast cancer research or causes.

Consumers are warned to make sure the product supports a legitimate cause because “anybody can use the pink-ribbon” logo. Fine print usually discloses the actual percentage going to the cause. Be wary of merchants who only states that a portion of proceeds go to support research without actually disclosing how much is spent.

The article cites some purchases that donates a generous amount – examples included Karey Kyle Rose Quartz earrings (67% of purchase price goes to BreastCancer.org) and a Van Cleef & Arpels pendant (51% of the $1950 price goes to the Breast Cancer Research Foundation). (more…)

Commercializing Diseases and Impotent Symbols

Jeanne Sather is an assertive cancer patient who has a gagging reflex with pink ribbons. I thought I was one of the few XX chromosomal species who can’t stand the color pink, and I’m comforted to know that Jeanne passionately detests pink, especially the shade of pink that Jeanne associates with “girly, sexist expectations.”

Her article, “It’s October–Time to Gag Me With Those Pink Ribbons” makes an important point: gross commercialization of breast cancer may send the wrong message to women and concomitantly desensitize us to the seriousness of breast cancer. Furthermore, the pink ribbon is exclusionary: men get breast cancer too. If a man with breast cancer wears a pink ribbon, I bet 9 times out of 10 he’ll get asked whether his spouse or female relative has breast cancer.

A ribbon used to work when it was a symbol unto itself, attached only to the its original cause. Now I can’t remember if a black ribbon is an activist symbol against torture or melanoma or lung cancer (lung cancer ribbon is sheer with gold, but black could be a logical lung cancer color if you think about the color of a cancerous lung). (more…)

Misleading Healthcare Ads and False Claims

Google has made astronomical profit from its advertisement programs, at least $900 million. Certainly, Google’s Adsense/Adwords services has benefitted both website publishers and businesses alike. Nakedmedicine.com takes advantage of Google’s Adsense service to display contextual (relevant) ads that Google serves up from advertisers, and when visitors click through to products and services that they are interested in, this website benefits by gaining a few cents in the “Website Operations and Maintenance” kitty. Google also serves up text-based, contextual ads next to key word search results.

When you mix free speech, lax advertising content policy enforcement, and opportunistic merchants, you come face to face with asking where the buck stops when consumers are barraged with misleading healthcare ads and false claims for miracle cures. (more…)

What Open Medicine Is and Is Not

A benefit – and side effect – of Internet culture is an embrace toward access and openness. I can access an abundance of free information on the web. I’ve always embraced open source applications, like the one used to create this website, and will continue to do so as long as it’s available.

However, a potential misconception called “Open Medicine” is a side effect of the Internet culture. I do not believe most people who advocate for “Open Medicine” on the web actually understand what “Open Medicine” really means, and all the ramifications and responsibilities that come with the term. When most speak of “Open Medicine” they refer to the idea that medical information should be freely available, transparent, and credible.

I don’t argue with the concept of making healthcare information available, transparent, and credible. After all, I created www.NakedMedicine.com to provide Accessibility, Honesty, and Integrity in healthcare information.

What I oppose is the misconception built around Open Medicine. In my opinion, here is what Open Medicine is NOT:

Open Medicine is not a blogging network, even if the blogging network is composed of a team of doctors, nurses, scientists, other healthcare “experts”, or anyone who has a burning desire to voice an opinion about a particular healthcare trend or drug.

In considering what Open Medicine really is, we only need to look at the basic definition of “Open” as it relates to this Internet phenomenon:

The basic idea behind open source is very simple: When programmers can read, redistribute, and modify the source code for a piece of software, the software evolves. People improve it, people adapt it, people fix bugs. And this can happen at a speed that, if one is used to the slow pace of conventional software development, seems astonishing. Source: Open Source Initiative.

In other words, Open Medicine can work only when we are allowing access to what is considered proprietary information or intellectual property, for the expressed purpose to enable collaboration to improve and innovate upon this “open” information. (more…)

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