My blood cancer friends know we can feel like a pincushion with regular blood tests and, for some of us, multiple cycles of infused therapies coupled with handfuls of pills. That is on the horizon for me starting later this month, after having had no therapy for chronic lymphocytic leukemia (CLL) since early 2001. I know I need it. I am not looking forward to it with relish. Nor am I looking forward to the $10,000 a year out-of-pocket expenses I could be asked to pay depending upon which therapy is chosen. And, of course, the uncertainty of how U.S. healthcare legislation will shake out adds anxiety about the cost for cancer care.

The good news comes from a very interesting article in FORBES that helps us understand exactly where those costs come from, why we pay so much, and it makes recommendations to resolve them. Bottom line: new medications don’t cost more; they cost U.S. consumers more!

In fact, one reason I am going for a CLL infused medicine versus a pill is because of cost. Like many of you, I am on Medicare and have a supplement plan and a drug plan too. I already take an oral therapy for another blood cancer, myelofibrosis (yes, I am a two-time loser!). And if I have to add another daily oral drug, would it break the bank!      

I am very grateful these oral drugs have been developed, and the infused ones, too. And I understand it has been mostly private industry that has developed these medicines, and they deserve a reasonable return. Clearly, things are out of whack for cancer patients right now. We know that infused therapies have more substantial coverage than oral ones and intermediaries affect the cost of our oral medicines. Now a recent article in FORBES sheds more light on the problems we face.

I've been learning drug companies give them discounts that we as consumers never see. So, unlike some outspoken politicians, I don't see the reputable pharma companies as the bad guys in this. There are much broader systemic issues that affect the affordability of our cancer care. For example, the article points out:

“Consumers experience more out-of-pocket costs for medicines while a greater share of other, likely more-expensive, medical expenditures is run through insurance.

“About 10% of overall health spending in the U.S. goes to prescription drugs, dwarfed by the 32% spent on hospitals and 26% on physician, dental, and other clinical services  (National Health Expenditure data). But more of the costs for prescription drugs are shifted to consumers than for other health costs.

 “A huge system of drug rebates and discounts happens behind the scenes in the pharmaceutical supply chain, (however) only a trickle of these discounts and rebates actually reaches the consumer …  Few of these discounts actually reach them directly, and many are required to pay their share of their prescription drug bills based upon the retail price of the drug.”

The article also makes several recommendations:

  • Fire the Middlemen. The Caterpillar Company, for example, moved away from its PBM (pharmacy benefit manager), and began negotiating its own drug discounts and deals with pharmacies for the benefit of its employees.
  • Reduce Regulatory Burdens. FDA Commissioner Scott Gottlieb is working aggressively to modernize the drug and device approval system. Yay!
  • Allow New Payment Models. For example, the pharmaceutical manufacturers are developing value-based payment approaches where the price of the drug depends on how effective it is at improving our lives.


What do you think? Currently, Patient Power has a survey open where I hope you will share your voice. Science is rushing ahead, especially with sophisticated testing and targeted and immunotherapies. But it makes no difference if we can't access and afford it—and encourage research companies to do more.

So as I am about to begin treatment, I am grateful: Grateful that the Phase II clinical trial I entered in 2000 worked for so long! grateful there are new medicines for me now; and grateful I have the wherewithal to pay for my share of care. But I know many people are in a tougher situation. It is for them that we need to be informed on the issues and the facts about what affects them and speak out in the healthcare debate.

Thanks to so many of you who have wished me well in my new treatment adventure. I am very confident I will do well and be very active with you and the entire Patient Power community for a long time to come!

Wishing you and your family the best of health!


Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.