In the treatment of prostate cancer the first very expensive drug we had that was FDA approved was Provenge, with an initial cost of $93,000 for a one-month’s treatment protocol. Today, the cost is in excess of $106,000. According to the phase III clinical trial result Provenge extends life by a median of 4.1 months, or under current costs each additional month comes with a price tag of approximately $26,000!

Now, with Zytiga costing over $8,500 per month with a median life extension of 4.4 months, Jevtana costing $11,000 per month with a median 2 month life extension (TROPIC), Xtandi costing $9,400 per month with a 4.8 month survival benefit (AFFIRM), and Xofigo costing $69,000 over 6 months ($11,500 per month) we do have to scratch our heads and wonder about the value of these life extensions.

I have always believed that life is precious, actually priceless. However, given the strain of these costs on society, which includes the strain on our spouses, partners, children and our grandchildren I have to question my assumption of life at any cost.

I am not sophisticated enough to say that the R&D costs and the eventual manufacturing costs borne by the pharmaceutical industry should not demand these prices, but I am dubious and I do have increasing serious doubts. Considering the staggering profits many of them do make I do have do say I have become a doubter. Actually, it is hard not to become a doubter.

Not surprising, the push back against these soaring cancer drug prices is gaining steam, not only with survivors like me, but also with our doctors! Last Monday the American Society of Clinical Oncology (ASCO) started their third recent effort to focus on value in cancer care. They proposed a formula to help survivors decide if a medication is worth it — what it will cost them and how much good it is likely to do.

Just two weeks ago, the European Society for Medical Oncology proposed a similar guide. Last week, Memorial Sloan Kettering Cancer Center in New York posted an online tool suggesting a drug’s fair price, based on benefits and side effects.

“We have a broken system” with drug prices rising more than the degree of benefit, said Dr. Peter Bach, director of the Center for Health Policy and Outcomes at Sloan Kettering. “We hope consumers increasingly think about value.”

Many of us survivors really have no idea the actual cost of these drugs as they are mostly paid for by insurance or Medicare. However, we are increasingly paying a larger share through higher copays and deductibles. Even if we don’t pay larger co-pays or deductibles, we all still pay for these drugs through our premium dollars and our Medicare payroll taxes.

“We have extraordinarily expensive technology that we have developed but a lot of it doesn’t seem to move the needle that much” in terms of survival, Michael Porter, a Harvard Business School economist, told an audience at the U.S. oncology group’s annual conference last month.

Hidden from the price of these drugs are other costs, like possible hospitalizations to have the drug administered or to deal with side effects.  And then, there are the emotional costs of families watching a loved one deal with the side effects of some of the treatments not to also forget the actual suffering of the survivor.

ASCO has developed a formula that they hope doctors can eventually use with their survivors as they make treatment decisions. The formula will evaluate the bottom line on the survival benefit, side effects and costs of a new treatment or combo versus older ones.

ASCO has pointed out that at this time the formula is just a prototype for four situations — lung or prostate cancer that has spread (advanced prostate cancer), advanced multiple myeloma and a common type of breast cancer.

ASCO is inviting comments from the public until Aug. 21 and plans similar efforts for other types of cancer.

In the formula, treatments are given scores for how much they improve survival or the time until cancer worsens. For advanced cancers, bonus points are given for drugs that greatly relieve symptoms or give patients a break from treatment. Side effects also are scored, and the points are combined to get a “net health benefit.”

What I find very interesting is that the ASCO formula is very personalized. They have recognized that the bottom line will mean different things to different survivors, said the head of the 24-expert panel that developed the tool, Dr. Lowell Schnipper, cancer center chief at Boston’s Beth Israel Deaconess Medical Center. For example, a drug may boost survival more than another one, but cause hand numbness that would greatly bother a violinist, he said.

“There is that kind of tradeoff in much of what we offer patients,” so each person needs to judge value for himself, he said. The final step is to compare costs. The tool gives drug prices provided by insurer United Health Care as a guide, but they vary greatly among hospitals, and copays depend on each person’s insurance plan.

The formula was published online Monday by the Journal of Clinical Oncology.

 

To read the actual ASCO framework (formula) as well as its rationales behind its development go to:

http://jco.ascopubs.org/content/early/2015/06/22/JCO.2015.61.6706.1

 

To provide your personal comments (up to August 21, 2015), thoughts and suggests about the framework (formula) go to:

https://www.surveymonkey.com/s/Valueframework

 

This survey is an opportunity to make your opinions matter. ASCO is requesting that all stakeholders provide their comments, you are a stakeholder whether you are a survivor, a caregiver or just a person paying into the insurance pool.