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A Good Multiple Myeloma Patient Is A Well Informed Patient – Becoming More Involved May Save You Money & Your Life!

Home/A Good Multiple Myeloma Patient Is A Well Informed Patient – Becoming More Involved May Save You Money & Your Life!

A Good Multiple Myeloma Patient Is A Well Informed Patient – Becoming More Involved May Save You Money & Your Life!

Two weeks ago I started an ongoing series, Examining The High Cost Of Celgene’s Multiple Myeloma Drugs.

Writing these articles has been an interesting ride! I have heard from multiple myeloma patients in Europe, Asia and all across the United States. My column in last week’s Myeloma Beacon, Pat’s Place: A Patient’s Reflections On The Progress Of Multiple Myeloma Research, stirred up more readers.

Reader e-mails and comments can be broken down into four basic categories: Those who believe our system is working and drug companies need to charge a lot in order to continue developing new, anti-myeloma drugs, open minded skeptics who don’t really trust drug companies but feel they are trying to do a good job, readers that feel costs are unreasonable and out of control, and last but certainly not least, a few outspoken conspiracy theorists who feel drug companies are intentionally withholding useful drugs and/or information from us.

Feedback is evenly spread-out among the four groups. What really surprises me is the overwhelming number of patients in a fifth group that just don’t seem to care.

Writing about this type of thing is like covering Washington politics. It’s interesting to those on the inside who understand and know the players and understand the details. But the average American citizen, living in Omaha, Nebraska, isn’t really interested and doesn’t care. They should–because understanding how Washington and our government works is the first step toward fixing an ineffective political system.

I’m finding the same holds true when writing about multiple myeloma–and most other cancers, for that matter. Patients don’t care about the politics. They don’t want to have to think or participate. They just want help. They want their drugs at a reasonable cost (Translation; for next to nothing!) and they expect them to work.

I understand. But that doesn’t make it right. Like the American political system, the way new drugs are researched and brought to market in this country is ineffective, inefficient and therefore unnecessarily expensive. But the only way to improve how research is conducted, how much the drugs cost and how quickly they become available to patients in need, is to become aware and do something about it!

The International Myeloma Foundation is heading-up a political initiative to help bring down the cost of oral chemotherapy medications for cancer patients. I have written articles about this initiative a number of times in the past. Last January I ran a story, Help The IMF Make Oral Chemotherapy Drugs More Affordable For Multiple Myeloma Patients. I followed up with another in March: SUPPORT EQUAL ORAL DRUG REIMBURSEMENT – International Myeloma Foundation Continues To Lobby For Lower Cost Oral Chemotherapy
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Successful implementation of this IMF initiative will help re-classify oral chemotherapy drugs on an equal footing with IV administered drugs. The result: No more dealing with the “donut hole” for Medicare patients using oral chemotherapy. No more high co-pays for multiple myeloma patients taking Thalomid or Revlimid.

The IMF is making progress. But it isn’t easy. Everyone is extra busy these days–especially cancer patients, right? Like computers and other appliances, we expect to turn them on and have them work. No one wants to take the time to read the manual. Well take the time! Click on my links above and help the IMF save all of us money–please!

Pay attention to what the drug companies are doing, and charging, and especially why. Hold them accountable!

I fall into the second of the four groups I listed above: I’m an open minded skeptic who don’t really trust drug companies, but feels they are trying to do a good job. I have met and know a lot of drug company researchers, staffers and reps. They are good, hard working people who would like nothing more than to help discover a cure for cancer. They want to help us! True, sometimes our economic system, FDA bureaucracy and/or corporate greed and mismanagement slow things down and muck things up. So welcome to the human race! Doctors aren’t perfect. Researchers aren’t perfect. Politicians certainly aren’t even close (Isn’t that disappointing?)

But most everyone involved with cancer research wants to help. It’s our job, as patients, to be fair and reasonable. To be kind to our caregivers, doctors, nurses and the med techs who take our x-rays and stick us when our docs need blood samples.

But a good patient isn’t a passive, compliant patient–just like a good citizen shouldn’t expect the system to run perfectly without input and participation.

No, a good patient asks questions. A good patient politely, yet firmly seeks a second opinion. A good patient doesn’t blindly accept a system mired in red tape and paperwork. A good patient should be well informed, help others and become politically active–just like a good citizen should.

If we, the patients, strive to help our doctors and health care providers be better. If we, the patients, hold our politicians and drug companies accountable. If we are all more aware and kind, everyone benefits.

No one asks to get cancer. It isn’t fair! But in the end, what choice do we have?
We might as well make the best of it. We should all work to help make our health care system, our country and our world better.

So I’m not giving up! Tomorrow let’s examine how a company like Celgene can profit from and control a drug that has been around for over forty years, thalidomide.

Feel good and keep smiling! Pat