Archive for the 'Patients' Category
February 16th, 2012 by Trisha Torrey
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.
……………………………………………………………………………………
Want More Patient Empowerment?
Find Hundreds of Articles at:
Every Patient’s Advocate
…and…
sign up for 2x per month newsletters of
Patient Empowerment Tips
February 2nd, 2012 by Trisha Torrey
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.)
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
……………………………………………………………………………………
Want More Patient Empowerment?
Find Hundreds of Articles at:
Every Patient’s Advocate
…and…
sign up for 2x per month newsletters of
Patient Empowerment Tips
December 22nd, 2011 by Trisha Torrey
This column first appeared
in the Syracuse Post Standard
December 20, 2011
……………………………
I live in Central New York State, where we are grieving the loss of 17-year-old Taylor Fleming who died in a car accident last week.
In the face of their unimaginable heartbreak and pain, Taylor’s parents decided to donate her organs and tissues, knowing that at least something good could come of her death. They realized their loss, and Taylor’s donation, will help others by extending their lives, or improving the quality of their lives.
Taylor’s eyes will provide sight to someone who has been blind. Her skin will help a burn victim heal. Her lungs may help someone with cystic fibrosis or COPD. Her heart, kidneys and liver will restore lives. Sixty transplants from Taylor’s body are already benefitting others.
Like Taylor’s parents did on her behalf, we can make the choice to donate our own organs and tissues when the time comes, too – whether we die through tragedy, or from natural causes.
Sadly, despite knowing that tens of thousands across the country are waiting for transplants, too few people consider themselves eligible to donate. You may believe you can’t be a donor, but you are probably wrong.
For example, some people think their religions preclude organ donation. But no major American religions restrict donation, including Christians, Jews and Muslims.
Some people believe that if they are chronically or terminally ill, they can’t or shouldn’t donate. But that is also a myth. Your donation may not take place directly to an individual, but your contribution to medical research may ultimately improve thousands or millions of lives.
There are three important steps for you to take if you decide to donate your organs or tissues. First, sign the organ donor statement on the back of your driver’s license while someone else watches you. Second, check to see if your state has an organ donation registry (we have such a registry in New York) and sign up to ensure your wishes will be carried out.
Finally, and perhaps most important – discuss your wishes with your family. Whether or not you can actually donate when the time comes can be decided by the professionals when it happens. Understanding your wishes will allow your family to have the conversation.
We never know when tragedy will strike. But we can honor those who have been lost by making the commitment to donate our own organs and tissues upon death.
Learn more about donating your organs, tissues or body so you, too, can give the gift of life.
Note: a reader has reminded me of another excellent gift: Registering for the Bet the Match bone marrow registry, too. Learn more.
Here are some additional resources for
end of life choices:
End of Life Decision-Making : The Ultimate in Patient Empowerment
Start an End of Life Wishes Conversation
……………………………………………………………………………………
Want More Patient Empowerment?
Find Hundreds of Articles at:
Every Patient’s Advocate
About.com Patient Empowerment
…and…
sign up for 2x per month newsletters of
Patient Empowerment Tips
October 27th, 2011 by Trisha Torrey
This column first appeared
in the Syracuse Post Standard October 25, 2011
………………………………..
If you’ve watched TV, read the newspaper, or logged on to any health-related website recently, then you may already know that it’s Medicare Open Enrollment time.
Open Enrollment means you have the opportunity to make choices that affect both your access to the healthcare you need, and the cost of that care, by choosing a payer plan that fits your needs.
Too many Medicare recipients simply default to whatever plan they used the year before, perhaps because they didn’t understand how to assess which plan would work best for them.
But it doesn’t have to be so difficult. There are some excellent resources available. So why not take the time this year to figure out which plan fits you the best?
If you are a do-it-yourselfer, begin with the Medicare Find-A-Plan website. It will walk you through your options, including pricing for the drugs you take, then will reveal your options and their costs. You can compare Original Medicare against many Medicare Advantage plans. From customer service to co-pays and health ratings, you can weigh cost and coverage against quality to make your choice.
Another way to do your research is to attend plan presentation programs offered by the many insurers that offer Medicare Advantage Plans. They can be very informative, but remember that the speakers are salespeople. Their paychecks depend on enlisting new customers. Don’t be swayed by coffee, cookies and promises! Ask good questions and compare many plans before you sign a contract.
For those who need an additional helping hand, personal, tailored, free assistance is offered to help you sort out the options. Called SHIP programs (State Health Insurance Counseling and Assistance Programs), they are staffed by volunteers who walk you through your decision making.
If Medicare Open Enrollment seems a bit early this year, it is. The process was started earlier so it could end earlier, too – December 7th. Ending the process early means you’ll be sure to get your Medicare ID card in time for early January appointments.
With so many ways to find help, you owe it to yourself to spend some time this Fall to review your Medicare options for 2012 and make needed adjustments. It’s “only” your health and money, after all.
……………… ADDITIONAL RESOURCES ON THIS TOPIC ………………
Medicare 101 – The Basics
Open Enrollment (Fall 2011) for Medicare 2012
What’s the Difference Between
Original Medicare and Medicare Advantage Plans?
……………………………………………………………………………………
Want More Patient Empowerment?
Find Hundreds of Articles at:
Every Patient’s Advocate
About.com Patient Empowerment
…and…
sign up for 2x per month newsletters of
Patient Empowerment Tips
