Every Patient's Advocate

Why Rob a Bank When You Can Make More Money by Counterfeiting Drugs?

Want to make millions of dollars quickly while risking only a few months in prison if (and that’s a big IF) you’re caught?  It’s not difficult at all. Just set yourself up as a distributor of counterfeit drugs in the United States.

This week’s announcement by the FDA that a counterfeit version of Avastin, a chemotherapy drug that is used for several kinds of cancers and tumors (lung cancer, kidney cancer, colon and rectum cancers – but no longer for breast cancer since approval was removed last year) has been found across the country, infused into the national drug supply, raises plenty of questions about how that could possibly happen.

It was followed by an interesting article in USA Today which partially answers the question.  Counterfeiting is a multi-billion dollar business that is on the rise because it’s so lucrative, and because the penalties are so… well… inconsequential.  I mean – would you be willing to spend no more than six months in jail if you could make millions of dollars for use when you got out?  (Even if you would answer no! I don’t want to go to jail!…  I’ll ask you this…. what if your child had treatable cancer and you had no insurance?  Just sayin’ …)

Avastin isn’t the only drug that may be counterfeited.  Any high cost drug that can be watered down, or manufactured to “look” right even if it is manufactured without its expensive ingredients, is a target for counterfeiters.  Lipitor and Viagra are probably the most apt to be counterfeit, but others like drugs used to treat HIV and AIDs, or diabetic drugs, or weight loss drugs, are likely targets for counterfeiters, too.

So what happens if you are somehow treated using a counterfeit instead of the real drug?  Maybe nothing. Or maybe you die. Or anything in between. The problem is, for the most part, we patients have very few ways we can detect whether a drug is real or fake.

Katherine Eban, in her book, Dangerous Doses, tells the stories of people who died from receiving infusions of counterfeit Procrit.  The conventional wisdom on this most recent discovery of fake Avastin is that there was nothing in the counterfeit version that was dangerous, and it’s difficult to tell within a regimen of 18-20 doses a cancer patient might receive over six months whether one “missed” infusion of the active ingredients has a long-term effect.

The bigger picture problem is that our drug supply is not being well enough protected by the FDA, which is tasked with protecting us. The FDA has no backbone when it comes to protecting us from bogus, counterfeit drug distributors who appear to be selling “real” drugs, but target greedy doctors, pharmacies and hospitals that are so willing to buy “discounted” drugs for their patients, knowing that there will be more profit in their reimbursements.  Experts estimate that about 1% of our drug supply is counterfeit.  That means that 1 out of every 100 administered drugs may be counterfeit, too.

One answer to this is an electronic pedigree system, meaning, from the time the drug is manufactured, until it is given to the patient, it is followed and logged using a bar code type system. If such a system was in place, then even us patients would have a way to double check that the drugs being given to us are the real drugs they are supposed to be.

So why doesn’t the FDA insist on the development of such a system?  Well, actually, they have. But again, they have no teeth, and so far, no backbone.  Every time they raise the issue, the drug companies and drug distributors begin to wail about the added cost to the system.  (Surprise!  Follow the money!)  And so, nothing gets done.

Like other issues in healthcare, it looks like little will happen to improve this system until something horrible befalls someone famous; someone who can actually override the special interests in Washington and insist on development of this electronic pedigree system.

Until then, here is information to help us patients do what we can to protect ourselves from counterfeit drugs.

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Patient Empowerment Tips

10 Patient Empowerment Tips to Post on Your Refrigerator Door

The information center in many homes is the refrigerator door.  From family photos, to postcards to magnets from pizza shops, to phone numbers and kids’ artwork – the important ephemera of our lives can be found on refrigerator doors.

So today I thought I would share some advice that is worth cutting out and sticking to your refrigerator door – 10 empowerment tips that will keep you healthier and help you get the great medical care you deserve.

And if you like them, I invite you to download them (in the form of a small poster) to stick on your refrigerator door! (although – maybe you prefer to stick them on your bathroom mirror or medicine cabinet?  That’s OK too.)

1. Become the expert in your own medical challenges. Read everything you can about your symptoms or diagnosis, ask questions, study anatomy, acquire and review copies of all your medical records. Be the authority on YOU.
2. Using your YOU expertise, partner with your doctors and other providers. While they may have a medical education and experience, YOU are the one who has lived in your body your entire life.  Be an active participant on your own healthcare team. If your provider won’t listen to you, or share in your decision-making, then find one who will.
3. Pursue a second opinionwhenever you are diagnosed with a difficult disease or condition, or surgery, chemo, or long term treatment are prescribed. And if they disagree?  Then seek a third.
4. Don’t be afraid to say NO.  Sometimes less is more. As the authority on YOU, you’ll know when NO is the right answer.
5. Thank your doctors and their staff members when they have been collaborative and helpful.  They work in a tough environment.  Appreciation, when appropriate, can go a long way toward strengthening your partnership.
6. Read and listen past the headlines.  Get the whole story, then pursue additional, objective resources to confirm their veracity and to determine how well they apply to YOU. In particular, be sure Internet health  information is credible.
7. Review your medical bills. Experts tell us that up to 80 percent of medical bills contain errors.  Incorrect bills will eventually cost us all in higher premiums and taxes.
8. Provide support to others. Shared experiences can help others who suffer the same medical challenges you do.  Refer them to good doctors, and support groups, and offer an ear when they want to share their joys, or need to vent.
9. Accept support from others. Whether it’s a loved one, or a professional, sometimes it’s imperative to have an advocate by your side to keep YOU safe, or keep you from being railroaded.
10. Finally, wash your hands regularly and cough or sneeze into your elbow.  Infections are dangerous and deadly whether acquired during a hospital stay, or brought home from school by the kids.  Hygiene can go a long way toward keeping infection at bay and keeping YOU healthy.

Don’t forget – if you like these tips, you can print them out as a small refrigerator poster – here they are.

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The 2012 Elections and the Issue of Healthcare Reform

This column first appeared
in the Syracuse Post Standard
January 17, 2012

During both the 2008 and 2010 elections, the issue of reforming the American healthcare system was the focus of overwhelming amounts of misinformation and disinformation.

Remember the email about Senior Death Panels?  It explained that the healthcare reform bill would allow Medicare to save money by refusing to pay for lifesaving treatment for older Americans.  Of course, it wasn’t true.

Another email stated that the Muslim belief in dhimmitude (surrender or appeasement) would mean American Muslims would be allowed to opt-out of the mandatory insurance rule. Also untrue.

Both inflammatory statements were horribly upsetting!  But it wasn’t a huge leap to figure out who wanted us to believe them.

Now primary season is here again, and some candidates continue to focus on repealing the Affordable Care Act (healthcare reform).  Whether or not you believe healthcare reform should be the law of the land, you owe it to yourself, and those you influence, to separate facts from fiction.

If someone shares “facts” with you that seem inflammatory, upsetting or don’t make sense, then there may be something askew. It’s possible they are true. Or, they may be only partially true, subjective interpretations of the truth, or even out-and-out lies.

Three websites provide neutral, objective analyses of political statements for our review. The best way to determine the veracity of information about healthcare reform, or any other political statements, is to scrutinize them at one, two or all three sites.

One site is the Pulitzer Prize winning Politifact.com. Its “Truth-o-Meter” scores statements on a range from True, to Flip-Flop, to Pants-on-Fire, along with supporting documentation for how the score was determined.

Factcheck.org is provided by the Annenberg Public Policy Center.  One section focuses specifically on email rumors.  Another section examines statements made by candidates and their high-profile supporters  to establish their accuracy.

Finally, Snopes.com is a great resource, too. While it originally examined only urban legends, in recent years it has expanded into political claims as well.

If you see, hear or read a statement from any organization or individual during the election season or any other time, be sure to review it carefully before you share it with someone else.  You don’t want to foolishly believe things that aren’t true, nor do you want to share misinformation or disinformation with others.  Using one of these statement-auditing websites will help you sort out the real facts.

Here is more information about reviewing email claims:

 How to Confirm or Debunk Claims
Made in Email, Blogs or Social Media

From Conspiracy Theories to Bogus Claims
How Can You Ascertain the Truth?

Have you confirmed or debunked a political email claim?
Share your findings!

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Your Most Important Health Resolution for 2012

This column first appeared
in the Syracuse Post Standard
January 3, 2012

When considering health-related resolutions, you probably expect me to wax poetic on the virtue of losing weight or quitting smoking.  But no, this resolution actually trumps them both.

Perhaps the most important health resolution you can make for 2012 is to establish a strong relationship with a primary care provider (PCP). Even if you think you already have the best PCP in the world, you’ll want to read on – because that relationship could change.

There are three reasons you must establish or reinforce a primary care relationship in 2012.

1.    Fewer Doctors
The number of primary care doctors is dwindling and practices are changing.  Doctors are aging into retirement, or leaving their practices due to frustrations with the healthcare system. Because fewer medical students are choosing primary care, those vacancies aren’t being filled.  In addition, some doctors will stop accepting certain types of insurance, including Medicare and Medicaid. Others are joining forces to establish larger, less personal practices.

2.    Healthcare Reform
In 2014, when the biggest portion of the Affordable Care Act kicks in, there will be 32 million new Americans with insurance, and newfound access to healthcare. For some, it will be the first time in their adult lives they’ve been able to afford care.

3.    More Older Patients
As baby boomers age, they will need more care, more often than when they were younger. Further, they are living longer than previous generations, so they’ll need medical services longer, too.

Bottom line – a year or more from now, the competition will be fierce.  All those aging baby boomers, plus those 32 million new patients will need to be absorbed by a dwindling number of primary care doctors. After 2012, it may be impossible for you to find a PCP who is accepting new patients.

Thus – an important resolution!  As best you can, think beyond 2012 and what your medical needs may be. If you don’t have a primary care doctor, find one.  If you have one, but you haven’t seen her in more than a year, then visit her before she decides to drop you from her patient roster. If you have a PCP, but you aren’t happy with the relationship, then make a change in 2012, before it’s too late. If you like your doctor, then ask questions about insurance coverage or practice changes, and then make adjustments if necessary.

That’s a New Year Resolution worth keeping.

Here is more information about finding a primary care doctor:

The Shortage of Primary Care Doctors

Finding Dr. Right

How to Decide Whether to Change Doctors

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