Can You Trust the Information?
I’ve noticed that as our access to information increases, our confusion to the information and our suspicion of the agenda behind available information also increases.
Can we trust the information we get from our many options? Even before trust - do most people actually understand the information with all the scientific jargon and technical speak?
One of the reasons I founded this website was in response to a father who was reading a scientific journal on a study that has some implications on bipolar disorder, and he didn’t understand what the study was talking about. The science was extremely abstract and practically inaccessible to consumers.
Recently pharma companies have made their clinical trial information accessible to the public. “Transparency” is the buzz. I don’t believe this increases “transparency” to patients. Maybe to physicians and scientists and of course, competing pharma companies. But I’ve seen these clinical trial portals and I can’t believe that most patients and consumers know what the information means or whether they should care.
What do you think?
Prescription Drug Access
Well friends, we’re closing in on the winter holidays and the next thing you know, we’ll be welcoming 2006. I haven’t been updating this website much, and I feel badly about it, because web visitors generally like frequent updates and new information. As you would expect from a small business owner, I’ve been swamped with “work” and have never worked so hard in my life. The upside is that I enjoy my work very much. The downside is that I sometimes get sucked into the “busy-ness” and hardly have the mental energy for many other things I’d otherwise enjoy doing.
Here’s something that I wish I had time to investigate: Pharma companies’ patient assistant programs. Back in July of 2005 (right before this website went down from a server outage), I received an email from Ms. Carrie Maloney, a registered nurse, on behalf of a service called “Med Solutions“. Carrie wanted me to know that there is a service out there that helps patients get prescription drugs they need if they cannot afford to pay for the drugs. Med Solutions is a fee-for-service, which means you as a patient pay Med Solutions to help you get free drugs if you cannot afford to get the drugs for your medical condition.
I emailed Carrie this response:
Thank you for bringing this to my attention. Have you considered bringing this up to PhRMA? Or if you did, what response did you get if any?
PhRMA is the pharma industry’s lobbying group - its association. Having worked within the pharma industry, I’ve been beaten over the head with all the patient assistance programs that drug companies offer patients. In fact, I had even heard a keynote speech by Billy Tauzin (used to be a politician, now president of the association) talk about the importance of increasing awareness of pharma’s patient assistance efforts so that the public will know drug companies are helping those who can’t afford to pay gain access to the drugs that they need. When I heard Billy’s speech I felt very encouraged by pharma companies’ actions. I thought perhaps this was a first step to mending some serious credibility bridges that various pharma scandals have burned over the past few years.
Carrie wrote me back thus:
Thank you for taking the time to email us. We are very aware of the program funded by the Pharmaceutical Companies (PPARx) and obviously we would love to have some funding, as all cost in supporting our organization is coming out of our own private funds. We feel that PPARx is somewhat self-serving to the Pharmaceutical companies. For example I could enter the brand name “Prozac” I would then do a search choose that medication and enter personal information, ie age,income,etc., What is generated as resources is not correct. Support systems come up that this medication is available either through “Hawaii RX” ( which is the cost that the state pays) or Hawaii AIDS program (which of course you have to have aids). The manufacture of this medication is Eli Lilly which is a participating program of PPARx and it is available through Eli Lilly free under their PAP . Based upon the information I put in to the system it should have came up as a free medication through Eli Lilly. This happens with many of the medications, and if I wasn’t familiar with these programs and was a patient trying to get a honest resource, then I would understand that It was not available free. This happens with alot of the medications and within different Pharmaceutical companies. So we do not feel comfortable with PPARx as we feel that they are misleading the public. If you have any other input please do not hesitate to contact us.
Carrie should be commended for her due diligence and checking the PPARx system. I was very disappointed to hear that PhRMA is falling short of its valiant efforts by not implementing the system well. Many companies and organizations have very good intentions, but if these intentions are not done well, it wouldn’t help anybody.
At the time I wanted to investigate this further, for example, by asking PhRMA whether it has dispatched testers for its system to see how “user-friendly” its patient assistance program is. However, it’s still on my “to do” list!
If you’ve tried pharma companies’ patient assistance program and experienced what nurse Carrie was describing, please let me know.
Additionally, January 2006 is when Medicare Part D becomes effective, and supposedly offer those on Medicaid better access to prescription medication. From what I’ve read so far, trying to understand how to enroll in Part D may be harder than walking a tight-rope backwards with a cinder block strapped around your waist.
Medication websites
2005 Update Every day, a plethora of health websites dot the internet landscape. Pharmaceutical companies also get in on the action by offering information about their products. What’s in it for you? Without a question, the single most important thing to download from a product website is the Package Insert, often abbreviated as “PI” and referred to as such by physicians. Whatever your doctor can tell you about a drug is a combination of the doctor’s clinical experiences with the drug as well as what s/he reads in the PI.
[R] means “Redirect”: What bugs me is how companies remove patient-friendly information from a product website once that product has gone generic. Since I created this section in 2002, I’ve seen this trend of redirecting the now-generic product page to the new formulation (extended release or an isomeric form of the drug). If companies want to demonstrate that they really do care about these conditions, they should leave the patient-friendly information on those websites and give people a choice to click to the new product page.
Abilify Psychotropic, Bristol-Myers Squibb. Abilify is the brand name for aripiprazole, the newest antipsychotic launched late last year. Abilify is indicated for the treatment of schizophrenia, with notable differences in side effect profiles when compared with current atypical psychotropics on market today. Weight change is minimal (many patients stop taking their meds when they gain a lot of weight, and this has a negative effect on their treatment), muscle movement disorders are not too different from those seen with placebo, and sedation is minimal. We’ll wait for some market experience to see how the positive observations seen in clinical trials stack in “real life”, when patients are not as tightly monitored as when they are in a clinical trial setting.
Buspar Anxiolytic/Generalized Anxiety Disorder, Bristol-Myers Squibb. Year 2002 Update: Since Buspar has gone generic, I’m not sure how long this web site will stay, but I don’t expect there to be any patient programs ongoing (it would be nice if generic companies, who are now are raking in the cash, to provide for patient programs the way pharmaceutical companies do, but that would be an anomaly…) Year 2003 Update: Looks like BMS is geared to pay a hefty fine for intellectual property disputes, but the web site is still running. Year 2005 Update: Website’s now just one page with link to PI.
Celexa SSRI-Class Antidepressant/Depression, Forest Pharmaceuticals. Now that citalopram’s gone generic, the website is redirecting you to the “next generation” of celexa while providing no helpful patient information.
Cymbalta SSNRI Depression and Diabetic Peripheral Neuropathic Pain, Eli Lilly. The patient related information mirrors those provided for Lilly’s other depression drugs.
Depakote Anticonvulsant and Antimanic agent/Partial Seizures, Bipolar Disorder, Migraines Prophylaxis, Abbott. Website includes: three categories of usage of this product, including Prophylaxis of Migraine Headaches, Absence and Complex Partial Seizures, and Mania Associated with Bipolar Disorder.
[R] Effexor SNRI-Class Antidepressant and Anxiolytic/Depression, Generalized Anxiety Disorder, Wyeth. Website redirects you to the “XR” formulation (still branded) website, which has some patient friendly information.
Geodon Antipsychotic, Bipolar Mania and Schizophrenia, Pfizer. Patient-friendly information is sparse, the website looks like a web brochure. I’d like to see more patient-related information than what is available, especially given this drug is still relatively “new”.
Lamictal Anticonvulsant/Adjunct Therapy for Partial Seizures, GlaxoSmithKline. This medication is now approved for the maintenance treatment of adults with bipolar I disorder to delay the time to occurrence of mood episodes (depression, mania, hypomania, mixed episodes) in patients treated for acute mood episodes with standard therapy. There is also a resource center called Bipolar.com.
Lexapro SSRI-Class Antidepressant, Forest Pharmaceuticals. Nice feature of physicians locator (from the American Medical Assocation) and depression screening tool under “Resources and Tools” as well as suggested resource including links and reading references. I especially like the Patient Literature section, which addresses different patient populations (general guide, guide for “you”, guide for men, guide for women, etc.).
Neurontin Anticonvulsant/Adjunct Therapy for Partial Seizures, Pfizer. This medication is approved for neuralgia and epilepsy. While this medication has not been approved for treating bipolar disorder, some physicians prescribe it “off-label” as an alternative agent. Neurontin off-label use sparked a whistleblower lawsuit.
Paxil SSRI-Class Antidepressant/Depression, Panic Disorder, OCD, GlaxoSmithKline. Website includes a self test and helpful information for friends and family members.
Prozac SSRI-Class Antidepressant/Depression, OCD, Bulimia Nervosa, Eli Lilly. Website has basic information about depression and about fluoxetine.
Remeron Atypical Antidepressant/Depression, Organon. Remeron is now available in rapid-dissolving tablet form. At least the site is back up with some information for visitors - the site is divided into US visitors, consumers (Organon company info, not Remeron-specific), and non-US visitors/healthcare professionals.
Seroquel Bipolar disorder, Antipsychotic/Schizophrenia, Astra-Zeneca. Website has a wealth of information about both conditions for patients.
[R] Wellbutrin Atypical Antidepressant/Depression, GlaxoSmithKline. Redirects to the extended release formation. Has a self-assessment.
Zoloft SSRI-Class Antidepressant/Depression, OCD, Panic, PTSD, Pfizer. Website includes: Your choice of disease conditions that Zoloft is FDA-approved to treat, Personal stories (reads more like testimonials for Zoloft’s efficacy), About Zoloft (how it works, side effects), Request materials (product brochures and disease state brochures), Prescribing information. Also presented in en Espanol. Year 2003 Update: The Zoloft “egg” mascot is one of the more frequently recalled ads when consumers were surveyed. For some reason I really like the semi-smile on the egg-shaped character (I guess the ad agency succeeded in one of its goals.)
Zyprexa Antipsychotic, Antimanic agent, Eli Lilly. Website has a nice section on “Managing day by day”, which I have not seen on other product websites.