I am heartened that the FDA is cracking down on practices related to drug approvals (you know, looking behind the curtain of so-called “research studies.”) and direct to doctor and direct to consumer marketing. I hope it is the harbinger of things to come.

Now comes Mr. Jarvik. He does not know how to row a skull, he is not a cardiologist, and he is not a licensed physician. His ad is being pulled because it is full of ethical issues (lies) He is the tip of the proverbial iceberg. When it comes to pharmaceutical marketing, where you get the information about treatment, choice matters. It also matters who your provider is relying on for information as well. And while television is the least of it, it is what people see.

Pay attention to celebrities who make claims about what drugs they take. You can’t check because their medical information is protected by law. Bear in mind these are PAID actors. Sure, mom or dad may have had so and so disease. MAY have had, or may NOT have had. I have yet to see a celebrity step forward, unpaid, and take on hepatitis  prevention. We have been approached to represent the treatment end by celebrities, as all have. But, we have no money to pay someone to talk about hepatitis C  and they have no real committment to prevention, so it didn’t work out. Selling prevention is really, really hard. So many community members have said that if only a celebrity would come out and speak for this community….

So many doctors are trained by drug reps (who are not doctors, are usually a young female in a black suit and nice to have a free lunch with) and nearly all of the conferences doctors attend are supported by the pharmaceutical industry, it is truly difficult to know what, or who, to believe. I wonder if they even ask themselves, or are they there for the free food?  Did Jarvik? Why do they have all those brochures and fancy posters, seminars (repeat after me: honorarium) in their waiting rooms? Because they are FREE. Otherwise, they might have to TALK to the patient.

How many doctors have donated to our organization?  There have been a few. Mostly, they donate to the foundations (distinct from a charitable organization) with the money to host the fancy parties, “support groups,” newsletters, fundraisers that pay researchers to research the same drugs we know don’t really work. Mostly, foundations and organizations talk to each other and seldom do outreach to other disciplines or groups. This is what we would like to facilitate more of. 

The National Institutes of Health convened a Consensus Management conference on Hepatitis C in 2002. Not one hepatologist could serve on the panel due to conflicts of interest. Did it really make a difference? Most of the presenters were people with some form of tie to the pharmaceutical industry and these presentations formed the basis of the recommendations. Our 3 minute presentation advocating for routine testing is on video somewhere at the NIH but it didn’t make it into the book or meeting summaries. Our volunteer medical director gave the presentation.

It never ceases to amaze me how few doctor have developed critical thinking skills that allows them to connect the dots. Instead I see them with silly cowboy hats on at AASLD parties, accepting drinks from young women dressed as champagne glasses, complete with bubbles made of balloons on their heads. No kidding!

Even the reputable “foundations” are reliant on this same pot of gold. The American Liver Foundation, for example, is the “fundraising arm” of the American Association for the Study of Liver Disease which funds research. The American Association for the Study of Liver Disease is the scientific arm and publisher of the peer reviewed journal Hepatology (the creme de la creme of liver journals)  They also are the hosts of the yearly AASLD “liver meeting” which presents the latest in the “science” regarding liver diseases. Very prestigious to both doctors and patients. At one time, to me too. Until the dots are connected and it leads you behind the curtain at the end of the gold brick road. And you see the same cast of characters at every function and they become a very small circle of people who admit in private what they would never say in public.

The cash cow for several years running has been the treatment for hepatitis C, along with the courtship of the HIV community via HIV/HCV co-infection for the influence and political power that community has come to enjoy. Saavy, smart and well educated in the ways of balancing threatening and back scratching pharmas into submission.

Doctors, particularly gastroenterologists rely on information from these meetings and the journal, as do many policy makers and others. The hepatologists, though mostly university professors, are “jarviks.” They are spokespeople on a higher plain, directed at the medical community. But, it’s the same dynamic. They bring  in the research dollars, get their names in the journals, have status and then become the medical director of a Pharmaceutical company. Sometimes, it is all simultaneously juggled. After all,  it completes  the image of authority.

 Marketing or science? This question has been one I have repeated many times. It’s one that every  medical professional should be asking: is this a medical expert or a drug company spokesperson?  I admit my guilt, too. The only serious funding for organizations such as HCOP  is pharmaceutical money. Or, pharmacetical assisted giving, as I call it. 

Pharmaceutical companies fund pass through grants for specific organizations, thus making it seem to be coming from a different source. This organization has been given small grants once in a while. We have relied on diagnostics money to keep the doors open as this is the basic message of HCOP: get tested. This does not present an ethical dilemma. They have never, not once, asked for quid pro quo. Patients contribute in many ways. It all matters.

It has also lead to running an organization primarily out of my own pocket, which I cannot do for much longer. But I can use the internet.

Same issues are a concern for the off label prescriptions for treating the side effects of a largely ineffective and, potentially dangerous “cure.”  Is this safe?

After all, the vast majority of those with hepatitis C are African Americans with genotype 1.   Treatment success rates are dismally low in this group. And, my efforts to get the attention of the African American community to emphasis prevention has been a complete failure.

The CDC continues its efforts to assure us that IV drug use is the major risk factor. This in spite of years of evidence to the contrary. So, what’s the message there? Where hepatitis C is concerned the CDC (and P?) has been a total failure at control or prevention. But, there they are, presenting at the “liver meeting” and partnering with the pharmaceutical industry to educate you and your doctor about hepatitis C. I’ve done it. I have been part of the machine.  I have paid out honorariums with pharmaceutical money. And, I have received money, too. 

It’s good for the economy but, is it good for you? Ask your doctor AND do your own research. Your doctor does not have the same amount of time and investment in your health that YOU do. And, doctors rely largly on journals and CME seminars for their information, which are funded by….yup, you guessed it!

For those with hepatitis C, this is a particularly important point: how many times have you seen this, or some variation of it, on a TV commercial for a drug? “Tell your doctor if you have liver disease.  Xyz should not be taken by those with liver problems. Tell your doctor if you suffer from liver problems.”

 Isn’t your doctor the one who should be telling you?  Symptomless liver disease, which is very common at every age including (and maybe, particularly) obese children, is not diagnosed without testing for it in advance of prescribing a medication.  That failure could result in liver/heart or other serious or fatal complications. Has your doctor tested you for  hepatitis, which is often symptomless? 

Really, you cannot take anything for granted in business. And healthcare is big business. 

Feel better?

Teresa Hanbey